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Support For Health Law Grows, Leaving Republicans In A Bind

Republican members of Congress are at home this week, with many of them getting an earful from anxious constituents about their plans to “repeal and replace” the Affordable Care Act. A poll out Friday gives those lawmakers something to be anxious about, too.

The monthly tracking poll from the Kaiser Family Foundation finds overall support for the health law ticked up to 48 percent in February, the highest point since shortly after it passed in 2010. That was a 5-point increase since the last poll in December. (Kaiser Health News is an editorially independent project of the foundation.)

In addition, 6 in 10 people said they did not favor current GOP proposals for turning control of Medicaid, the federal-state program for low-income residents, over to the states or changing the federal funding method. More than half said Medicaid is important to them or family members.

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The increase in the law’s popularity is almost entirely due to a spike in support among independents, whose approval of the law has risen to 50 percent, compared with 39 percent unfavorable. Continuing a trend that dates to the passage of the law, the vast majority of Democrats approve of it (73 percent), while the vast majority of Republicans disapprove (74 percent).

Poll respondents are also concerned about the way Republicans say they will overhaul the measure. While they are almost evenly divided between wanting to see the law repealed (47 percent) or not repealed (48 percent), very few (18 percent) of those favoring repeal support the idea of working out replacement details later. More than half of the repeal supporters (28 percent of the sample) say the repeal and the ACA’s replacement should come simultaneously.

Interestingly, even among Republicans, fewer than a third (31 percent) favor an immediate repeal, while 48 percent support simultaneous repeal and replacement, and 16 percent don’t want the law repealed at all.

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Simultaneous repeal and replacement, which is what President Donald Trump has promised, could prove difficult since Republicans have not agreed to a plan. They are using a special budget procedure, called reconciliation, that allows them to move legislation with only a simple majority in the Senate, but that bill is limited in what it can remove from the law and what can be added to it. Other bills would likely have to overcome a filibuster by Democrats in the Senate, which requires 60 votes. Republicans currently have a 52-48 majority in that chamber.

When asked about the Republican plans to overhaul the Medicaid program, nearly two-thirds of those polled prefer the current Medicaid program to either a “block grant” that gives states more flexibility but would limit Medicaid’s currently unlimited budget, or a “per capita cap,” which would also limit spending to states but would allow federal funding to rise with enrollment increases.

Respondents also strongly favor letting states that expanded Medicaid under the Affordable Care Act continue to receive federal funding. The Supreme Court in 2012 made that expansion optional; 31 states (plus Washington, D.C.) adopted it. Eighty-four percent said letting the federal funds continue was very or somewhat important, including 69 percent of Republicans, and 80 percent of respondents in states that did not expand the program.

Republicans are counting on savings from capping Medicaid to pay for other health care options they are advocating.

The national telephone poll was conducted Feb. 13-19 with a sample of 1,160 adults. The margin of error is plus or minus 3 percentage points for the full sample.

Categories: Medicaid, Repeal And Replace Watch, Syndicate, The Health Law

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Threat Of Obamacare Repeal Leaves Community Health Centers In Limbo

Treating people for free or for very little money has been the role of community health centers across the U.S. for decades. In 2015, 1 in 12 Americans sought care at one of these clinics; nearly 6 in 10 were women, and hundreds of thousands were veterans.

The community clinics — now roughly 1,300-strong — have also expanded in recent years to serve people who gained insurance under the Affordable Care Act. In 2015, community health centers served 24.3 million people — up from 19.5 million in 2010. Most of the centers are nonprofits with deep roots in their communities and they meet the criteria to be a federally qualified health center. That means they can qualify for federal grants and a higher payment rate from Medicaid and Medicare.

The ACA was a game changer for these clinics — it has enabled them to get reimbursement for much more of the care they provided, because more of their patients now had private insurance or were on Medicaid. Revenue at many clinics went up overall, and many of the health centers used federal funding available under the law to expand their physical facilities and add more services, such as dentistry, urgent care or mental health care.

With repeal of the ACA looming, clinic directors said they stay up at night wondering what’s next. We spoke with four, who all say their clinics are in a holding pattern as Congress debates the health law’s future.

Saban Community Clinic, Los Angeles

Julie Hudman, the CEO of Saban Community Clinic in Los Angeles, Calif., said there’s a lot at stake for her patients.

“A lot of the folks that we see are single adults,” she explained. “They’re maybe more transitional. They’re homeless patients. They have behavioral health challenges. They’re really, to be honest, some of the most vulnerable and poorest patients of all.”

Before the ACA went into effect, eligibility for Medi-Cal, as Medicaid is known in California, depended on a variety of factors, including income, household size, family status, disability and others. Under Obamacare, according to the California Department of Health Care Services, people can now qualify for Medi-Cal on the basis of income alone if their household makes less than 138 percent of the federal poverty level — that’s $16,395 for an individual and $33,534 for a family of four.

Prior the ACA, about half of the Saban clinic’s 18,000 patients were uninsured, Hudman said. They paid little for treatment — maybe a copay of $5 or $10. Almost all of those patients qualified for Medi-Cal after the health law expanded eligibility, she said, and that’s made a big difference for the clinic’s bottom line: Medi-Cal pays the clinic around $200 per patient visit.

These days, more than half of Saban’s revenue comes from health insurance. The possibility of losing some of that money, Hudman said, is forcing some hard decisions. She had been looking to lease or buy a fourth facility, she said, but now that plan is on hold; as are her hopes of expanding free help for the homeless.

“I’m not willing to move forward and take some of those risks,” she said. “I need to make sure that we’re able to pay our bills and pay our staff.”

Before the last election, Hudman said, “we had a lot of momentum moving forward. And now we’ve just sort of stalled.” — Rebecca Plevin, KPCC, Los Angeles

Jordan Health, Rochester, N.Y.

In the last few years, funding has been on the rise at Jordan Health, in Rochester, N.Y., and so has the extent of the clinic’s services.

The boost in funding has partly come from higher reimbursement rates the ACA authorizes, and from the increased number of patients at the clinic who have insurance. But Jordan Health, which has 10 locations in the area, has also benefited from the federal government’s pumping of more money into what are known as section 330 grants that enable expansion of services and facilities.

Janice Harbin, CEO of Jordan Health in Rochester, N.Y. says section 330 grants have allowed Jordan Health to hire more health practitioners. (Karen Shakerdge/WXXI)

Janice Harbin, CEO of Jordan Health in Rochester, N.Y. says section 330 grants have allowed Jordan Health to hire more health practitioners. (Karen Shakerdge/WXXI)

The 330 grant money gives qualified clinics the option of offering services that aren’t billable to insurance plans. At Jordan Health, the funds enabled the hiring of some different types of health practitioners who were not previously part of the team — dietitians, behavioral health specialists and care coordinators. And that, in turn, said Janice Harbin, president and CEO of Jordan Health, means patients can increasingly get the different kinds of care they need in one place.

Almost 90 percent of Jordan’s patients are considered a racial or ethnic minority, and over 97 percent live at or below 200 percent of the federal poverty line, according to data gathered by the federal Health Resources & Services Administration.

“When you’re dealing with a situation of concentrated poverty,” Harbin said, “your patient needs more than just ‘OK, let me give you a checkup, and pat you on the back and say now go out and do all these things I told you to do.’”

Jordan Health received an increase of about $1 million since 2013, according to its grant coordinator, Deborah Tschappat.

Tschappat said she expects Jordan will get about the same annual award in 2017, assuming federal funding for the 330 program stays about the same. If federal funding is cut significantly, they would potentially lose some services.

For now, Jordan Health plans to “expand services judiciously, while increasing efficiency and productivity,” Tschappat said.

In the coming months Harbin and her colleagues will be lobbying lawmakers in Albany and Washington, D.C., to renew Jordan’s funding — including the 330 grant, which is set to end in September.

“We’re used to doing a lot with a little, but we increasingly know that we do need to have financial support,” Harban said. “And that’s keeping us up at night.” — Karen Shakerdge, WXXI, Rochester

Adelante Healthcare, Phoenix

Adelante Healthcare has been part of the health safety net in Phoenix for nearly four decades — when its doctors began helping farm workers in the city’s surrounding fields. But the Affordable Care Act enabled Adelante to expand like a brand new business.

“Adelante has grown by 35 percent in the last 12 months,” said Dr. Robert Babyar, Adelante’s assistant chief medical officer. “We’ve increased our provider staffing — almost doubled our providers. And the number of services we provide has doubled.”

Adelante operates nine clinics throughout the Phoenix metro area. The one where Babyar met with me includes play areas for children and a dental office.

Most of their 70,000 patients are low-income and about half are covered by either Medicaid or KidsCare — Arizona’s version of the Children Health Insurance Program. In 2014, Arizona became one of the Republican-led states that expanded Medicaid under the ACA. That brought more than 400,000 people onto the state’s Medicaid rolls and created big demand for Adelante. Low-income patients who did not have insurance before the expansion had relied on Adelante’s sliding fee schedule. Much of that population now has health coverage, either through the ACA marketplace or the state.

“That opened up more options for our patients, more specialists they could see, procedures they could have done,” Babyar said.

As Congress moves to repeal and replace the health care law, Adelante is in a holding pattern. It has delayed the groundbreaking of a new site until later this year because of the uncertainty. A full repeal of the ACA — without a replacement that keeps its patients covered — would limit any future growth, and strain the new staff and resources it has added. It wouldn’t be the first time Adelante had to scale back its services because of changes to Medicaid. In 2010 and 2011, Arizona lawmakers froze enrollment for its CHIP program and for childless adults in Medicaid. Then, in 2012, Adelante lost more than a million dollars.

Babyar said it has taken several years to get their new patients into the system and working with doctors consistently to manage their conditions.

“All the progress we made with those patients to stay and be healthy — that can fall apart really quick,” said Babyar. — Will Stone, KJZZ, Phoenix

Denver Health, Denver

Denver’s Federico F. Peña Southwest Family Health Center is part of Denver Health — the safety-net system that takes care of low-income people.

“Definitely this clinic has benefited from Obamacare,” said Dr. Michael Russum, who practices family medicine for Denver Health and helps lead the clinic. “And this population has benefited from Obamacare by the expansion of Medicaid.”

That’s what helped make the economics work as Denver Health put a new $26 million clinic in a high poverty neighborhood in 2016, said Dr. Simon Hambidge, Denver Health’s CEO of Community Health Services. With the ACA in place, he said, the health system was able to count on the new clinic having a population of paying patients with insurance that could help support it.

Hambidge predicted the hospital will weather the storm if Obamacare is repealed and there are serious cuts to safety-net programs, like Medicaid and Medicare, as some Republicans have suggested. But it will probably be harder to open new clinics in other high-need neighborhoods, he conceded.

“We’ll survive,” Hambidge said. “We may not be able to be as expansive, because we would be back to less secure times.” — John Daley, Colorado Public Radio

This story is part of NPR’s reporting partnership with local member stations and Kaiser Health News.

Categories: Medicaid, Public Radio Partnership, Repeal And Replace Watch, States, Syndicate, The Health Law

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Geriatricians Can Help Aging Patients Navigate Multiple Ailments

For months, Teresa Christensen’s 87-year-old mother, Genevieve, complained of pain from a nasty sore on her right foot. She stopped going to church. She couldn’t sleep at night. Eventually, she stopped walking except when absolutely necessary.

Her primary care doctor prescribed three antibiotics, one after another. None worked.

“Doctor, can’t we do some further tests?” Teresa Christensen remembered asking. “I felt that he was looking through my mother instead of looking at her.”

Referred to a wound clinic, Genevieve was diagnosed with a venous ulcer, resulting from poor circulation in her legs. A few weeks ago, she had a successful procedure to correct the problem and returned home to the house where she’s lived for more than 50 years in Cottage Grove, Minn., a suburb of St. Paul.

Judith GrahamNAVIGATING AGING

Would her mother benefit from seeing a geriatrician going forward, wondered Christensen, her mother’s primary caregiver, in an email to me? And, if so, how would she go about finding one?

I reached out to several medical experts, and they agreed that a specialist in geriatrics could help a patient like Genevieve, with a history of breast cancer and heart failure, who’d had open heart surgery at age 84 and whose mobility was now compromised.

Geriatricians are “experts in complexity,” said Dr. Eric Widera, director of the geriatrics medicine fellowship at the University of California, San Francisco.

No one better understands how multiple medical problems interact in older people and affect their quality of life than these specialists on aging. But their role in the health care system remains poorly understood and their expertise underused.

Interviews with geriatricians offer insights useful to older adults and their families:

Basic knowledge. Geriatricians are typically internists or family physicians who have spent an extra year becoming trained in the unique health care needs of older adults.

They’re among the rarest of medical specialties. In 2016, there were 7,293 geriatricians in the U.S. — fewer than two years before, according to the American Geriatrics Society.

Geriatricians can serve as primary care doctors, mostly to people in their 70s, 80s and older who have multiple medical conditions. They also provide consultations and work in interdisciplinary medical teams caring for older patients.

Recognizing that training programs can’t meet expected demand as the population ages, the specialty has launched programs to educate other physicians in the principles of geriatric medicine.

“We’ve been trying to get all clinicians trained in what we call the ‘101 level’ of geriatrics,” said Dr. Rosanne Leipzig, a professor of geriatrics at the Icahn School of Medicine at Mount Sinai in New York City.

Essential competencies. Researchers have spent considerable time over the past several years examining what, exactly, geriatricians do.

A 2014 article by Leipzig and multiple co-authors defined 12 essential competencies, including optimizing older adults’ functioning and well-being; helping seniors and their families clarify their goals for care and shaping care plans accordingly; comprehensive medication management; extensive care coordination; and providing palliative and end-of-life care, among others skills.

Underlying these skills is an expert understanding how older adults’ bodies, minds and lives differ from middle-age adults.

“We take a much broader history that looks at what our patients can and can’t do, how they’re getting along in their environment, how they see their future, their support systems, and their integration in the community,” said Dr. Kathryn Eubank, medical director of the Acute Care for Elders unit at the San Francisco Veterans Affairs Medical Center. “And when a problem arises with a patient, we tend to ask ‘How do we put this in the context of other concerns that might be contributing?’ ”

Geriatric syndromes. Another essential competency is a focus on issues that other primary care doctors often neglect — notably falls, incontinence, muscle weakness, frailty, fatigue, cognitive impairment and delirium. In medicine, these are known as “geriatric syndromes.”

“If you’re losing weight, you’re falling, you can’t climb a flight of stairs, you’re tired all the time, you’re unhappy and you’re on 10 or more medications, go see a geriatrician,” said Dr. John Morley, professor of geriatrics at Saint Louis University.

“Much of what we do is get rid of treatments prescribed by other physicians that aren’t working,” Morley continued.

Recently, he wrote of an 88-year-old patient with metastasized prostate cancer who was on 26 medications. The older man was troubled by profound fatigue, which dissipated after Morley took him off all but one medication. (Most of the drugs had minimal expected benefit for someone at the end of life.) The patient died peacefully eight months later.

Eubank tells of an 80-year-old combative and confused patient whom her team saw in the hospital after one of his legs had been amputated. Although physicians recognized the patient was delirious, they had prescribed medications that worsened that condition, given him insufficient pain relief and overlooked his constipation.

“Medications contributing to the patient’s delirium were stopped. We made his room quieter so he was disturbed less and stopped staff from interrupting his sleep between 10 p.m. and 6 a.m.,” Eubank said. “We worked to get him up out of bed, normalized his life as much as possible and made sure he got a pocket talker [hearing device] so he could hear what was going on.”

Over the next four days, the patient improved every day and was successfully discharged to rehabilitation.

Finding help. A geriatric consultation typically involves two appointments: one to conduct a comprehensive assessment of your physical, psychological, cognitive and social functioning, and another to go over a proposed plan of care.

The American Geriatrics Society has a geriatrician-finder on its website — a useful resource. Also, you can check whether a nearby medical school or academic medical center has a department of geriatrics.

Many doctors claim competency in caring for older adults. Be concerned if they fail to go over your medications carefully, if they don’t ask about geriatric syndromes or if they don’t inquire about the goals you have for your care, advised Dr. Mindy Fain, chief of geriatrics and co-director of the Arizona Center on Aging at the University of Arizona.

Also, don’t hesitate to ask pointed questions: Has this doctor had any additional training in geriatric care? Does she approach the care of older adults differently — if so, how? Are there certain medications she doesn’t use?

“You’ll be able to see in the physician’s mannerisms and response if she takes you seriously,” Leipzig said.

If not, keep looking for one who does.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

Categories: Aging, Navigating Aging, Syndicate

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Sprint To Find Zika Vaccine Could Hinge On Summer Outbreaks

As warmer temperatures herald the arrival of pesky mosquitoes, researchers are feverishly working on several promising vaccines against Zika, a virus notorious for infecting humans through this insect’s bite.

The speed and debilitating effects of last year’s Zika outbreak in the Western Hemisphere prompted a sprint to develop a vaccine. Just a little more than a year after the pandemic was declared a global health emergency, a handful of candidates are undergoing preliminary testing in humans.

But researchers say the uncertainty over whether the Zika epidemic will continue affects their ability to finish testing. They need locations with an active viral outbreak to conduct large-scale human trials and make sure the vaccine actually protects against disease.

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“On one hand, you don’t want to see outbreaks of infection,” said Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases. “But on the other hand, [without that testing] you might have to wait a long time to make sure that the vaccine works.”

All the vaccines currently being tested are in Phase I clinical trials, which means they are being tested for safety in a small number of people. According to a review paper published Tuesday in the journal Immunity, the vaccines represent a variety of scientific techniques to thwart the disease, ranging from inactivating the virus to manipulating its DNA.

The NIAID announced Tuesday it is launching yet another Phase I trial for a vaccine made out of proteins found in mosquito saliva. The product is intended to trigger a human immune system response to the mosquito’s saliva and any viruses mixed with it. If successful, the product could protect humans against a spectrum of mosquito-transmitted diseases, including Zika.

Col. Nelson Michael, director of the U.S. Military HIV Research Program at the Walter Reed Army Institute of Research and co-author of the paper, said he expects preliminary reports on the safety of some of the older vaccines in April. As of now, he said, it is impossible to guess which vaccine will prove most effective in providing immunity.

“Sometimes it’s difficult to predict which horse will win the race,” Michael said.

The NIAID announced Tuesday it is launching yet another phase I trial for a vaccine made out of proteins found in mosquito saliva. (Courtesy of NIAID)

The NIAID is launching a phase I trial for a vaccine made out of proteins found in mosquito saliva. (Courtesy of NIAID)

Zika ― which is spread from infected people to others by mosquito bites or sexual contact, often infects people without showing symptoms. In some cases, it causes flu-like symptoms, such as fever, muscle aches and joint pain in adults ― and, in rare cases, Guillain-Barré syndrome, which can cause temporary paralysis. But it is most notorious for causing some children to be born with microcephaly ― a birth defect in which a child’s head is smaller than the average size ― if their mothers were exposed to Zika.

The virus garnered international attention after hundreds of cases of disabled babies surfaced in Brazil. It quickly swept through South America and the Caribbean before stopping on the southern coast of the U.S.

The World Health Organization declared the outbreak a “public health emergency of international concern” on Feb. 1, 2016, then ended the alert on Nov. 18.

Vaccines that meet the safety standard in Phase I clinical trials undergo subsequent rounds of testing to gauge effectiveness. To measure this, researchers rely on the gold standard of administering the vaccine to large number of individuals already exposed to the virus. However, Zika’s recent arrival to the Western Hemisphere means researchers don’t know whether the virus will become a perennial threat, or a one-time explosion.

The uncertainty poses several implications for the surge in Zika vaccine development. A lull in the outbreak could cause significant delays in testing, pushing back the timetable for a commercially available product, Fauci said.

While researchers can use alternative methods to measure efficacy without large-scale testing, a decline in the circulation of the Zika virus could set progress back by years because the vaccine testing would be ineffective.

“If we don’t get a lot of infections this season in South America and Puerto Rico, it may take years to make sure the vaccine works,” he said.

Fauci expects to launch the next round of human trials for a DNA vaccine developed by the NIAID next month.

Michael also worries that a lag in the number of Zika cases could lead the private sector to pull funds from vaccine development. It takes millions of dollars to develop a drug or vaccine, and pharmaceutical companies play a critical role in making and manufacturing them, he said. But those companies have many competing interests, he noted, and if it is hard to test a vaccine this year, the public and private Zika prevention efforts may turn their attention elsewhere.

“This is a constant issue where you put your resources,” he said.

A transmission electron micrograph of Zika virus, which is a member of the family Flaviviridae, is shown. (Cynthia Goldsmith/CDC)

A transmission electron micrograph of Zika virus, which is a member of the family Flaviviridae, is shown. (Cynthia Goldsmith/CDC)

So far, signs suggest that the climate could be ripe for Zika again this year. Warmer-than-usual temperatures are affecting areas across the Western Hemisphere, CBS reported, including hotbeds of the Zika outbreaks in Brazil. The higher temperatures increase the voracity of Zika’s main transmitter, the Aedes aegypti mosquito.

In the United States, areas with populations of the Aedes aegypti are closely monitoring their numbers. Last year, Texas and Florida dealt with locally acquired cases of Zika infection.

In Texas, public health officials have monitored mosquito populations throughout the winter to track their numbers and any presence of the virus. Despite unseasonably warm weather, said Chris Van Deusen, spokesman for the Texas Department of State Health Services, they have seen lower numbers of the Aedes aegypti and no cases of Zika.

Van Deusen said the state is also monitoring the outbreak in Mexico, since heavy traffic across the border increases the possibility of transmission. Officials are expecting another outbreak of locally transmitted cases of disease, Van Deusen said.

“There’s so many factors that go into it, it’s really impossible to make an ironclad prediction,” he said.

Categories: Public Health, Syndicate

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Popular Charity Heart Screenings For Teens May Cause More Problems Than They Solve

Dozens of not-for-profit organizations have formed in the past decade to promote free or low-cost heart screenings for teens. These groups often claim such tests save lives by finding abnormalities that might pose a risk of sudden cardiac death.

But the efforts are raising concerns. There’s no evidence that screening adolescents with electrocardiograms (ECG) prevents deaths. Sudden cardiac death is rare in young people, and some physicians worry screening kids with no symptoms or family history of disease could do more harm than good. The tests can set off false alarms that can lead to follow-up tests and risky interventions or force some kids to quit sports unnecessarily.

“There are harms that I don’t think a lot of people realize,” said Dr. Kristin Burns, who oversees a two-year-old registry at the National Institutes of Health of sudden deaths in people under 20. It’s one of several efforts aimed at gathering better data about cardiac abnormalities in kids.

Studies using limited data have found between one and four sudden cardiac deaths occur annually per 100,000 kids between ages 1 and 18. By comparison, 22 out of 100,000 U.S. teens are killed in accidents, including those involving motor vehicles, and nine out of 100,000 commit suicide, according to the Centers for Disease Control and Prevention.

Some screening advocates believe sudden cardiac deaths are underreported and not enough is being done to spare families from the fate of losing a child. “We have to acknowledge that every kid who drops dead, they’ve been failed by the current system,” said Darren Sudman, who founded Simon’s Fund, a screening effort in greater Philadelphia in memory of his infant son, who died of an arrhythmia.

Screening programs say they’re educating parents about the risks. “What we want to emphasize is, make sure your kid is heart-safe,” said Dr. Jonathan Drezner, a sports and family medicine specialist in Seattle at UW Medicine and medical director of the local Nick of Time Foundation.

Enthusiasm for ECGs, which measure the electrical activity in the heart to detect abnormalities, grew after a 2006 study showed they lowered death rates among athletes in Italy. But research in other countries has not yielded similar results, and the Italian researchers recently were accused of refusing to share their data so it could be evaluated independently.

Some 60,000 to 70,000 U.S. teens were screened in 2016, most by foundations created by families who lost a child to sudden cardiac death, said Darren Sudman, who runs an online directory, Screen Across America. It’s unclear whether high school athletes face higher risk than non-athletes, so screening programs usually invite everybody.

Screenings typically are held in high schools and overseen by volunteer cardiologists, with funding from individuals and businesses including hospitals. A handful of hospitals and for-profit companies also run screenings.

It may be presumptuous to claim ECGs save lives, but parents often believe they do, said Sudman. “If I find a heart condition, I promise you there are parents who are thanking me for savings their kid’s life.”

That perception is stoked by tragic stories in the media of children who died suddenly after never reporting a symptom. Meanwhile, the drawbacks of ECGs are seldom depicted. As many as 1 in 10 ECGs detects a potential abnormality, and the emotional and financial toll of such a finding can be significant — especially when they turn out to be wrong.

Following a screening ECG and echocardiogram last fall, Daniel Garza, 16, a talented sophomore basketball player in San Antonio, was told he had hypertrophic cardiomyopathy, a thickening of the heart muscle and the most common cause of sudden cardiac death in young people. He was advised to quit all exercise, at least temporarily.

“We were shocked, just shocked,” said his mother, Denise. She said her son became depressed when he couldn’t play the sport he enjoyed and excelled at. “He came home and cried himself to sleep. He said, ‘Mom, why did God give me this gift to take it away?’”

The Garzas traveled to the Mayo Clinic in Rochester, Minn., where further tests indicated his enlarged heart was a benign condition known as athletic heart, a result of intense training. His mother estimates that correcting the misdiagnosis cost more than $20,000, including medical costs, travel and lost work.

Daniel has returned to the basketball court. Still, Denise Garza said the emotional toll was rough. “It was one of the hardest things my family has ever endured.”

Several cardiologists said they often see cases like this or worse. Even after follow-up testing, it can be unclear which cases are life-threatening, so kids with low risk could be restricted from exercise or given life-altering interventions such as implantable defibrillators, surgery or anti-arrhythmic medications.

Medical groups have wrestled with the issue. The American Heart Association and the American College of Cardiology recommended in 2014 against mass ECG screening, noting that sudden cardiac death is rare in teens and false positives generate “excessive and costly second-tier testing.” ECGs also miss at least 1 in 10 cases of hypertrophic cardiomyopathy and more than 9 in 10 cases of congenital anomalies, the second-most-common cause.

But their expert panel accepted voluntary screening “in relatively small cohorts” if there’s physician involvement, quality control and a recognition of unreliable results and ancillary costs.

By contrast, there’s broad support for automated external defibrillators, which have been shown to prevent deaths at schools and other public places. Some foundations focus their efforts on disseminating the defibrillators.

One problem with ECGs is a lack of good data.

“There’s no evidence we have that ECG screening saves lives,” said Dr. Jonathan Kaltman of the NIH’s National Heart, Lung, and Blood Institute. “There’s never been a controlled clinical trial, which is the only way to answer that question.”

Efforts are underway to improve the accuracy of the screening programs. Some are adding echocardiograms, which use ultrasound to produce images of the heart, to verify potential abnormalities. Advocates say false positives have dropped as a result of better interpretation guidelines, known as the Seattle Criteria, which are expected to soon be endorsed by cardiology societies in revised form.

But the criteria are not perfect, and there’s a “giant gap” in training cardiologists to use them, said Drezner, one of the developers. He’s also a medical adviser for Parent Heart Watch, a consortium of foundations. “If I was a parent, I’d want to know about the experience of the (cardiologists) and what they’re going to do to help my kid if they have a positive screen.”

At the urging of screening advocates, the NIH partnered with the Centers for Disease Control and Prevention to rigorously track cardiac deaths as part of a Sudden Death in the Young Case Registry. So far a handful of states and counties have joined the effort, which helps local health departments collect better data. The goal is to standardize death investigations and get a firm handle on how often kids die from heart abnormalities as well as the role of factors such as genetics. Initial findings are expected to be available in about two years. The NIH is also funding three university-based research groups to answer key questions about sudden cardiac death in the young.

Some screening organizations are getting behind a nascent initiative with the Cardiac Safety Research Consortium to harness their own screening data for research. It would require standardizing their practices and tracking outcomes, which organizations aren’t now equipped to do.

“Screening is happening. We can’t avoid that,” said Dr. Salim Idriss, director of pediatric electrophysiology at Duke University and co-chair of the initiative. “We have a really good opportunity to get the data we need to make it better.”

Separately, the UT Southwestern Medical Center in Dallas recently began a four-year pilot study involving athletes and band members at eight high schools to determine the feasibility of a full-scale randomized controlled trial.

A valid finding on the overarching question of whether ECG screening saves lives could require at least 800,000 participants and a cost of $15 million, said Dr. Benjamin Levine, a cardiologist and the lead researcher.

The pilot is partly a response to legislation that would mandate ECGs for student athletes in Texas. A similar bill was also introduced in South Carolina. Both bills failed, but it’s expected there will be more attempts to mandate ECGs, leaving state legislators looking for better guidance.

“We’re not going to solve this by having more debates, but by having more data,” Levine said.

Categories: Cost and Quality, Syndicate

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‘Tsunami’ Of Alzheimer’s Cases Among Latinos Raises Concerns Over Costs, Caregiving

SACRAMENTO, Calif. — Florence Marquez liked to describe herself as a cannery worker, even though she was best known in her heavily Latino East San Jose neighborhood as a community activist.

She strode alongside Cesar Chavez in the farmworker movement during the 1960s and 70s. She helped build affordable housing for poor families near her local church.

But eight years ago, Florence, now 86, couldn’t find her way to the house she had lived in for 50 years. “That’s when we knew she needed 24-hour care,” said her oldest daughter, Barbara Marquez, 61.

Florence was diagnosed with Alzheimer’s disease, which robbed her of her memory and her fierce independence. Across the United States, stories like hers are becoming more common, particularly among Latinos — the fastest growing minority in the country.

With no cure in sight, the number of U.S. Latinos with Alzheimer’s is expected rise by more than eight times by 2060, to 3.5 million, according to a report by the USC Edward R. Roybal Institute on Aging and the Latinos Against Alzheimer’s network.

Advanced age is the leading risk factor for Alzheimer’s disease and the likelihood of developing Alzheimer’s doubles about every five years after age 65. As a group, Latinos are at least 50 percent more likely than whites to have Alzheimer’s, in part because they tend to live longer, the report notes.

Barbara Marquez visits her mother Florence Marquez at her nursing home on Friday, December 16, 2016. Barbara was her mother’s primary caregiver until the family decided to put their mother in a 24-hour care facility. (Heidi de Marco/KHN)

Barbara Marquez visits her mother Florence Marquez at her nursing home, Sagebrook Senior Living, in Carmichael, Calif., in December 2016. Barbara was her mother’s primary caregiver until the family decided to put their mother in a 24-hour care facility. (Heidi de Marco/KHN)

“This is an incoming tsunami,” said Dr. William Vega, one of the report’s authors and the Roybal Institute’s executive director. “If we don’t find breakthrough medication, we are going to be facing a terrible financial crisis.”

That tidal wave of Alzheimer’s cases is prompting some tough conversations in Latino families, who often pride themselves on caring for elders at home, rather than placing them in nursing homes.

Those talks come with a lot of guilt, Barbara said. Until recently, Barbara was her mother’s primary caregiver. Her sister and brother helped out.

“But it was more than I could have anticipated,” Barbara said, recalling sleepless nights as she tried to make sure Florence didn’t get up and wander off. “It impacts your health, it impacts your marriage. So we looked for help.”

About 1.8 million Latino families nationwide care for someone with Alzheimer’s and other types of dementia. And while the Roybal report shows that Latino families are less likely than whites to use formal care services, such as nursing home care, institutionalized care is becoming more common among these families.

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Between 1999 and 2008, the number of elderly Latinos living in U.S. nursing homes grew by about 55 percent, a rate that outpaced the growth of the overall Latino population during that time, according to research published in July 2011 in Health Affairs.

That can be costly. Nationwide, the average cost for basic services in an assisted living facility is $43,200 per year, according to the Alzheimer’s Association. Yearly nursing home care now averages more than twice that, at slightly more than $92,000.

For many Latino families, getting outside help isn’t an option. It’s often too expensive for seniors who aren’t eligible for Medi-Cal, California’s version of the Medicaid program for low-income people, which generally pays for nursing home care. Immigrants who are in the country unlawfully do not qualify for it, nor do people whose incomes are too high.

Florence’s children decided to take their mother out of her house in San Jose, and they brought her to live with her daughter Barbara in Fair Oaks, just outside Sacramento. They sold the San Jose house, thinking it would help pay for institutionalized care should their mom need it down the road.

She did not qualify for Medi-Cal, so she lived with Barbara for about three years. But after trying out a senior day care program outside of the house at a cost of about $78 a day, Barbara and her family placed Florence in a senior home in the Sacramento suburb of Carmichael, where she has been living for the past year.

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Dwindling Resources

The decision to institutionalize Florence Marquez left her children feeling both guilty and overwhelmed by the steep expense. Her care now costs $3,000 to $4,000 per month, they said. They pay extra for specialized services.

They had the proceeds from the sale of Florence’s house, “but those resources are dwindling,” Barbara said. “What do we do when that money is gone?”

Marquez, 85, was diagnosed with Alzheimer’s disease eight years ago. She lived in the same house for 50 years, but one day she couldn’t find her way back home. (Heidi de Marco/KHN)

Florence Marquez, 85, was diagnosed with Alzheimer’s disease eight years ago. She lived in the same house for 50 years, but one day she couldn’t find her way back home. (Heidi de Marco/KHN)

The Roybal study estimates that the cumulative economic impact of Alzheimer’s among Latinos will hit $2.35 trillion by 2060. That figure includes the costs of medical and long-term care, as well as the lost earnings of family members who provide unpaid in-home care, and of the Alzheimer’s victims themselves, according to the study.

Gustavo Lopez of Chicago cares for his mother, Agustina Lopez, 76, who was diagnosed with Alzheimer’s disease seven years ago.

Gustavo, 48, and his four siblings looked into assisted living but couldn’t afford it. Agustina, after moving between her children’s homes, eventually landed with Gustavo, her youngest.

When Gustavo first took on the role of primary caregiver, his mother still did most things on her own, he said. But she now relies on him to help her eat, bathe, dress and take her medication.

So Gustavo needs a job with flexible hours. He’s worked mostly as a waiter. Other employment opportunities have come his way, some with better pay, but caring for his mother comes first, he said.

Asking For Help

Gustavo does get some help from family friends who check in on his mom while he is at work. He also found Casa Cultural in Chicago, a social service agency that offers a day program for seniors. He can drop his mom off at the center for a few hours, giving him a respite.

Free or low-cost programs like these are available in many communities, but families need to do research and ask for help, said Constantina Mizis, president of the Chicago-based Latino Alzheimer’s and Memory Disorders Alliance.

The alliance, formed in 2009, focuses on family members who are primary caregivers. Mizis said she has met many caregivers who are near their breaking point. The nonprofit offers training for them, helps find resources to boost their own well-being and puts on community events for families.

When seeking support, the best place to start is at a local community group or center — a church, a nonprofit, a United Way office, or the local Alzheimer’s Association chapter, for example, Mizis said. These groups will most likely refer caregivers to a county’s Agency on Aging or a state’s Department of Aging.

There, families are assigned a social worker who can discuss what benefits are available. If an Alzheimer’s patient qualifies for Medicaid, these benefits could include caregiver training and payment through programs such as California’s In-Home Supportive Services. But benefits and eligibility vary by state.

In 2010, the Social Security Administration recognized early-onset Alzheimer’s as a medical condition eligible for disability income. That could help people whose Alzheimer’s disease is diagnosed before the age of 65, but many Latino families aren’t aware the program exists, Mizis said.

A Push For Awareness

Because Latinos are more likely to use informal and more affordable care options, the Roybal report calls for improving training and resources for families in both English and Spanish.

Among the caregivers who opt to keep a parent with Alzheimer’s at home is Julia Garcia, of Houston, Texas. She rotates with her three daughters to watch her mother, Marcela Barberena, 85, who was diagnosed with the disease last year.

Julia, who had been unfamiliar with Alzheimer’s, initially thought her mother’s forgetfulness and childlike behavior was due to age.

“Too often people will see Alzheimer’s as a result of old age, but this brain-deteriorating disease is not natural,” said Vega, co-author of the report.

Julia Garcia said she realized it was something more serious when her mother took a shuttle bus from Houston’s international airport without knowing her destination.

“We had agreed I’d pick her up, but she left on her own,” Julia said. “She ended up downtown. It was the scariest moment of my life.”

As a new caregiver, Julia reached out to her local Alzheimer’s Association chapter for information. While some resources are available in Spanish in the Houston chapter, Julia noticed very few Latinos attending the informational workshops or classes.

Barbara Marquez takes her mother, Florence Marquez, on a walk on Friday, December 16, 2016. (Heidi de Marco/KHN)

Barbara Marquez takes her mother, Florence Marquez, on a walk. (Heidi de Marco/KHN)

Spanish-language media provided little information about the disease. “You rarely hear anything about it on TV or the radio,” she said.

In addition, many Latinos, including the Marquez, Lopez and Garcia families, are often unaware of clinical trials through which families can gain access to experimental therapies and medications at little or no cost.

Latinos are underrepresented in clinical trials sponsored by the National Institutes of Health: They account for 17 percent of the U.S. population but only 7.5 percent of participants at the 32 NIH-funded Alzheimer’s research centers across the country, according to the Roybal study.

Latino volunteers for these trials are important in helping researchers develop Alzheimer’s treatments that work for all ethnic groups, the report says.

“This is why it is so important to invest in the education of these communities,” Mizis said.

Her group helps train promotoras, or community health educators, in regions with large Latino communities — including San Francisco, Los Angeles, Baltimore and New York. Going door-to-door, promotoras educate families about the disease.

“I see firsthand everyday how much help our communities need,” Mizis said. “And this need keeps growing.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

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El “tsunami” de casos de Alzheimer entre latinos plantea inquietudes sobre el cuidado y los costos

SACRAMENTO, Calif. — A Florence Márquez le gustaba describirse a ella misma como una trabajadora de fábrica de conservas, a pesar que era conocida en su latinísimo vecindario del este de San José como una activista comunitaria.

Ella caminó junto a César Chávez en el movimiento de trabajadores agrícolas durante los años 60 y 70. Ayudó a construir viviendas asequibles para familias pobres cerca de su iglesia local.

Pero hace ocho años, Florence, ahora de 86, no pudo encontrar su camino a la casa en la que había vivido durante 50 años. “Fue cuando supimos que necesitaba atención las 24 horas”, dijo su hija mayor, Barbara Márquez, de 61 años.

Florence fue diagnosticada con la enfermedad de Alzheimer, que le robó su memoria y su feroz independencia. A lo largo de los Estados Unidos, historias como Florence Márquez se están convirtiendo en más comunes, particularmente entre los latinos, la minoría de más rápido crecimiento en el país.

Sin una cura a la vista, se espera que el número de latinos con Alzheimer aumente más de ocho veces para 2060, a 3.5 millones, según un informe del Edward R. Roybal Institute on Aging de la Universidad del Sur de California (USC) y de la red Latinos Against Alzheimer.

La edad avanzada es el principal factor de riesgo para la enfermedad de Alzheimer y la posibilidad de desarrollar el mal se duplica cada cinco años después de los 65. Los latinos son al menos 50% más propensos que los blancos no hispanos a tener Alzheimer, en parte porque viven vidas más largas, destaca el informe.

Barbara Marquez visits her mother Florence Marquez at her nursing home on Friday, December 16, 2016. Barbara was her mother’s primary caregiver until the family decided to put their mother in a 24-hour care facility. (Heidi de Marco/KHN)

Barbara Marquez, de 61 años, visita a su madre, Florence Marquez, de 85, en el hogar Sagebrook Senior Living, en Carmichael, Calif., el viernes 16 de diciembre de 2016. (Heidi de Marco/KHN)

“Este es un tsunami en marcha”, dijo el doctor William Vega, uno de los autores del informe y director ejecutivo del Roybal Institute. “Si no encontramos medicamentos innovadores, vamos a enfrentar una terrible crisis financiera”.

Esa marea de casos de Alzheimer está provocando algunas conversaciones difíciles en las familias latinas, que a menudo se enorgullecen de cuidar a sus ancianos en casa, en lugar de ponerlos en hogares para adultos mayores.

Esas charlas se presentan con mucha culpa, dijo Barbara Márquez. Hasta hace poco, Barbara era la principal cuidadora de su madre. Su hermana y su hermano ayudaban.

“Pero fue más de lo que yo podría haber previsto”, dijo Barbara, recordando las noches sin dormir mientras intentaba asegurarse de que Florence no se levantara y escapara. “Afecta tu salud, tu matrimonio. Así que buscamos ayuda”.

Alrededor de 1,8 millones de familias latinas en todo el país cuidan a alguien con Alzheimer y otros tipos de demencia, y mientras que el informe de la USC muestra que las familias latinas tienen menos probabilidades que los blancos no hispanos de usar servicios de atención formales, como un hogar, el cuidado institucionalizado se está convirtiendo en una opción más popular entre estas familias.

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Entre 1999 y 2008, el número de latinos seniors que vivían en hogares aumentó un 55%, una tasa que superó el crecimiento de la población latina en general durante ese período de tiempo, según una investigación publicada en julio de 2011 en Health Affairs.

A nivel nacional, el costo promedio de los servicios básicos en un centro de asistencia es de $43,200 al año, según la Asociación de Alzheimer. Los cuidados anuales en hogares de ancianos son, en promedio, unos $92,000, más del doble.

Para muchas familias latinas, obtener ayuda externa no es ni siquiera una opción. A menudo es demasiado costoso para las personas mayores que no son elegibles para el Medi-Cal, la versión de California del Medicaid para personas de bajos ingresos, que generalmente paga por el cuidado de enfermería en hogares de ancianos. Los inmigrantes que están en el país ilegalmente no califican, ni tampoco las personas cuyos ingresos son demasiado altos.

Después de probar un programa de cuidado de ancianos fuera de la casa a unos $78 al día, Barbara y su familia pusieron a Florence en una residencia para ancianos de la zona de Sacramento, donde ha estado viviendo durante el último año.

 Recursos en baja

La decisión de institucionalizar a Florence Márquez dejó a sus hijos no sólo sintiéndose culpables, sino también con una economía tambaleante por los elevados gastos. El cuidado de su mamá ahora cuesta de $3,000 a $4,000 por mes, dijeron. Pagan extra por servicios especializados.

Florence actualmente no califica para el Medi-Cal, por lo que la familia Márquez vendió la casa de su madre en San José para pagar por su atención. “Pero esos recursos están disminuyendo”, dijo Barbara. “¿Qué vamos a hacer cuando se acabe el dinero?”.

El informe de la USC estima que el impacto económico acumulado de la enfermedad de Alzheimer entre los latinos llegará a $ 2,35 mil billones en 2060. Esta cifra incluye los costos de atención médica y de largo plazo, así como la pérdida de ingresos de los miembros de la familia, y de las propias víctimas del Alzheimer, según el estudio.

Gustavo López, de Chicago, se preocupa por su madre, Agustina López, de 76 años, diagnosticada con la enfermedad de Alzheimer hace siete años.

Gustavo, de 48 años, y sus cuatro hermanos buscaron un centro de asistencia, pero no pudieron solventarlo. Agustina, después de vivir en las casas de todos sus hijos, eventualmente se quedó con Gustavo, el más joven.

Marquez, 85, was diagnosed with Alzheimer’s disease eight years ago. She lived in the same house for 50 years, but one day she couldn’t find her way back home. (Heidi de Marco/KHN)

Florence Marquez, de 85, fue diagnosticada con Alzheimer hace 8 años. Marquez vivió en la misma casa por 50 años, pero un día no pudo encontrar el camino a su hogar. (Heidi de Marco/KHN)

Cuando Gustavo asumió por primera vez el papel de cuidador principal, su madre todavía hacía la mayoría de las cosas por su cuenta, dijo. Pero ahora depende de él para comer, bañarse, vestirse y tomar su medicación.

Así que Gustavo necesita un empleo con horario flexible. Ha estado trabajando principalmente como camarero. Han aparecido otras oportunidades de empleo, algunos con mejor salario, pero el cuidado de su madre está primero, dijo.

 Pidiendo ayuda

Gustavo recibe ayuda de amigos de la familia que vigilan a su madre mientras está en el trabajo. También encontró Casa Cultural en Chicago, una agencia de servicios sociales que ofrece un programa de día para personas mayores. Puede dejar a su mamá en el centro por unas horas, lo que le da un respiro.

Programas gratuitos o de bajo costo como éstos están disponibles en muchas comunidades, pero las familias necesitan investigar y pedir ayuda, dijo Constantina Mizis, presidenta de la Latino Alzheimer’s and Memory Disorders Alliance, con sede en Chicago.

La alianza, formada en 2009, se centra en los miembros de la familia que son los principales cuidadores. Mizis dijo que ha conocido a muchos cuidadores que están al borde de quebrarse. La organización sin fines de lucro les ofrece capacitación, ayuda para encontrar recursos para impulsar su propio bienestar, y participación en eventos comunitarios para las familias.

Al buscar apoyo, el mejor lugar para comenzar es en un grupo o centro comunitario local: una iglesia, una organización sin fines de lucro, una oficina de United Way o el capítulo local de la Asociación de Alzheimer, por ejemplo, dijo Mizis. Es probable que estos grupos refieran a los cuidadores a la Agencia de Envejecimiento del condado o al Departamento de Envejecimiento del estado.

Allí, se les asigna a las familias un trabajador social que puede discutir qué beneficios están disponibles. Si un paciente de Alzheimer califica para Medicaid [Medi-Cal en California], estos beneficios podrían incluir capacitación para cuidadores y pago a través de programas de “efectivo y consejería”. Los Servicios de Apoyo en el Hogar de California es uno de esos programas. Sin embargo, los beneficios y la elegibilidad varían según el estado.

En 2010, la Administración del Seguro Social reconoció al Alzheimer de inicio temprano como una condición médica elegible para los ingresos por discapacidad. Eso podría ayudar a las personas cuya enfermedad de Alzheimer se diagnostica antes de los 65 años, pero muchas familias latinas no son conscientes de esto, dijo Mizis.

Un impulso para la concientización

Debido a que los latinos son más propensos a usar opciones de atención informales y más asequibles, el informe de la USC pide mejorar la capacitación y los recursos para las familias, tanto en inglés como en español.

Entre los cuidadores que optan por mantener a un padre con Alzheimer en casa está Julia García, de Houston, Texas. Ella se rota con sus tres hijas adolescentes y adultas para cuidar a su madre, Marcela Barberena, de 85 años, quien fue diagnosticada con la enfermedad el año pasado.

Julia, que no estaba familiarizada con el Alzheimer, pensó que el olvido y el comportamiento infantil de su madre se debían a la edad.

“Demasiado a menudo la gente ve al Alzheimer como resultado de la vejez, pero la enfermedad que deteriora el cerebro no es natural”, dijo Vega, coautor del informe de la USC.

Barbara visits her mother almost every weekend. Her mother's care now costs $3,000 to $4,000 per month, says Barbara. (Heidi de Marco/KHN)

Barbara Marquez saca a pasear a su madre, Florence Marquez, el viernes 16 de diciembre de 2016. (Heidi de Marco/KHN)

Julia García dijo que se dio cuenta de que era algo más serio cuando su madre tomó un micro desde el aeropuerto internacional de Houston sin saber su destino.

“Habíamos acordado que la recogería, pero ella se fue por su cuenta”, dijo Julia. “Terminó en el centro de la ciudad. Fue el momento más espantoso de mi vida”.

Como nueva cuidadora, Julia se acercó a la sede local de la Asociación de Alzheimer para obtener información. Aunque algunos recursos están disponibles en español en el capítulo de Houston, Julia notó que muy pocos latinos asistían a los talleres informativos o a las clases.

Lo mismo ocurre con los medios en español, que proporcionan poca información sobre la enfermedad. “Rara vez se oye nada en la televisión o en la radio”, dijo.

Muchos latinos, incluyendo las familias de Márquez, López y García, no saben sobre los ensayos clínicos y cómo pueden ayudar a sus seres queridos.

Los latinos están subrepresentados en los ensayos clínicos patrocinados por los Institutos Nacionales de Salud: representan el 17 por ciento de la población de los Estados Unidos, pero sólo el 7,5 por ciento de los participantes en los 32 centros de investigación de Alzheimer financiados por los INS en todo el país, según el informe de Roybal.

Los voluntarios latinos son importantes para ayudar a los investigadores a desarrollar tratamientos para el Alzheimer que funcionen para todos los grupos étnicos, según el informe de USC.

“Por eso es tan importante invertir en la educación de estas comunidades”, dijo Mizis.

Su grupo ayuda a entrenar promotoras o educadores comunitarios de salud en regiones con grandes comunidades latinas, incluyendo San Francisco, Los Ángeles, Baltimore y Nueva York. Al ir de puerta en puerta, las promotoras educan a las familias sobre la enfermedad.

“Veo de primera mano cuánto necesitan ayuda nuestras comunidades”, dijo Mizis. “Y esta necesidad sigue creciendo”.

Esta historia fue producida por Kaiser Health News, que publica California Healthline, un servicio editorial independiente de la California Health Care Foundation.

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Veteran Teaches Therapists How To Talk About Gun Safety When Suicide’s A Risk

Jay Zimmerman got his first BB gun when he was 7, and his first shotgun when he was 10.

“Growing up in Appalachia, you look forward to getting your first firearm,” he said, “probably more so than your first car.”

His grandfather taught him to hunt squirrels and quail. Zimmerman, who lives in Elizabethton, Tenn., said pretty much everyone he knows has a gun. It’s just part of the culture.

“When I went into the military, that culture was reinforced,” he said. “Your weapon is almost another appendage. It’s part of who you are.”

Zimmerman served as a medic in the Army in the late 1990s and early 2000s, with stints in Bosnia, Africa and the Middle East. Since he came home, he’s struggled with PTSD and depression. It reached a crisis point a few years ago, when his best friend — the guy who had saved his life in a combat zone — killed himself. Zimmerman decided his time was up, too.

“I decided that I would have one more birthday with my daughter, one more Christmas with my daughter,” he said. “I had devised my own exit strategy for 16 February 2013.”

But then he bumped into a woman who used to ride the same school bus when they were kids. His exit date came and went. They’re married now.

Zimmerman still gets depressed, but now he’s a peer counselor at the Mountain Home VA Medical Center in Johnson City, Tenn. He also travels to conferences all over the country, sharing his story with therapists and with other vets, encouraging them to ask for help when they need it.

Even today, he explains at these conferences, if he’s not doing well, he disassembles his guns and stores them separately from ammunition, so he can’t make any rash decisions. And if things get really bad, Zimmerman has a special arrangement with a few friends.

“I call them and say, ‘Look, I’m feeling like it’s not safe for me to have firearms in my home. Can you store them for me for a couple days till I feel like I’m OK to have them back?’ ”

Suicide is often an impulsive act. Nearly half the people who survive an attempt say the time between their first thought of suicide and the attempt itself was less than 10 minutes. But the method can mean the difference between life and death: People who take pills have time to change their minds, or may still be alive when discovered. That’s not the case with guns.

Almost 70 percent of veterans who commit suicide do so with a gun, which prompted President Barack Obama to order the VA to talk to vets about gun safety and storage options like the ones Zimmerman uses.

But here’s the trouble: Most therapists aren’t gun people. They don’t know how to talk about guns and so they don’t.

“One obvious reason for that is that no one has taught them how,” explained Megan McCarthy, a psychologist and National Deputy Director in the Office for Suicide Prevention in the U.S. Department of Veterans Affairs.

McCarthy was invited to speak recently at a suicide prevention conference in San Francisco, aimed at therapists who work with vets.

“How many of you would say you feel really comfortable having a conversation with any of the people you work with about limiting access to all lethal means?” she asked the roomful of therapists.

Hardly anyone raised their hand.

“OK, so that’s why we’re here today,” she said.

Researchers recommend starting with a field trip to a shooting range. There, therapists can learn about different kinds of firearms, as well as gun locks, and get an introduction to gun culture.

When counseling vets, therapists have to ask more questions and be less directive, McCarthy said.

“We often conceive of ourselves as experts — as people who impart information to clients,” she said. But with vets, “it may take time to build trust. Telling them what to do the first time you’ve met them is probably not going to be a very effective approach.”

McCarthy presented a case study at the conference: A 28-year old, unmarried Army veteran who fought in Iraq told his VA psychiatrist that he had an argument with his girlfriend last week. He drove to an empty parking lot and sat with his loaded handgun in his lap, intending to kill himself.

He didn’t do it. A week later, the man told his psychiatrist things were still tense with his girlfriend. But he didn’t want to talk about suicide or storing his gun.

McCarthy asked the clinicians in the audience what they would do next, if they were this man’s psychiatrist.

“Why did he not do it? That would be my question,” one therapist said.

“I would want to see this individual again, within the same week,” said another. “I believe in strong intervention.”

Jay Zimmerman, the former army medic and peer counselor, stood up and explained his different perspective.

“Chances are the reason he’s not talking to you is because he’s afraid he’s going to lose his gun that he carries pretty much all the time,” Zimmerman said. “My buddies are the same way. We all carry — all the time.”

A lot of veterans would sometimes rather confide in a fellow vet than someone in a white coat, Zimmerman said. And that was an unusual takeaway for the professional counselors: Sometimes their role is not to intervene at all, but to be a facilitator. To make sure vets have someone to talk to outside the therapy office.

This story is part of a partnership that includes KQED, NPR and Kaiser Health News.

Categories: Mental Health, Public Health, Public Radio Partnership, Syndicate

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Congressman’s Ties To Foreign Biotech Draw Criticism

When a small Australian biotechnology company, Innate Immunotherapeutics, needed a clinical trial for an experimental drug it hoped to turn into a huge moneymaker, the company landed a U.S. partner where it had high-level connections: Roswell Park Cancer Institute in Buffalo, N.Y.

The company is partly owned by Rep. Chris Collins, a wealthy Republican entrepreneur from Buffalo, whose enthusiasm for Innate helped persuade others to invest. Former Rep. Tom Price, now secretary of Health and Human Services, bought Innate stock after Collins told him about it, Price said at his Senate confirmation hearing. Other shareholders include Collins’ campaign supporters, some of whom are key figures in Buffalo’s medical corridor, company and government documents reveal.

Federal money is in play, too: National Cancer Institute funds are being used to test an application for Innate’s drug that could make the company more attractive to potential buyers. Innate has said in presentations to investors that it hopes to sell itself to a major pharma company by the end of 2017.

The Roswell clinical trial, which could start this month, will investigate whether MIS416 might have an application as an ingredient in a vaccine for ovarian cancer. Innate’s primary strategy, however, is to develop the drug for advanced multiple sclerosis and it has told investors that the results of early-stage human trials in Australia and New Zealand against MS will be reported by this fall.

With its tangled web of medicine, politics and money, Innate’s story has proven irresistible for U.S. news media, whose initial reports in December that Price received discounts on Innate stock purchases helped place the secretary on the hot seat as he won confirmation. Now, the story is exploding half a world away, and the focus is shifting to Collins. The Australian newspaper’s website reported Feb. 6 that a former securities regulator there alleged Collins may have violated disclosure requirements in the country’s securities laws in acquiring his Innate stake and also by not reporting his close relationships with other large shareholders. The Australian government’s Takeovers Panel said Feb. 15 that it has not decided whether to convene a panel to investigate the allegations.

Innate CEO Simon Wilkinson said in a statement that company financial documents “fully informed” financial markets about Collins’ investments. The company was “not in the slightest bit concerned” about the allegations, which “are politically motivated and have been peddled by hack journalism,” he said.

Compared with Price, the potential conflicts could run even deeper for Collins who — along with two children — owns more than 21 percent of Innate’s shares. He is its largest shareholder, company reports show.

Collins, who is ranked by the Center for Responsive Politics as the 14th-wealthiest member of Congress, sits on the health subcommittee of the Energy and Commerce Committee, where he helps oversee health care funding. He was a member of President Donald Trump’s transition team and is a liaison between the new administration and Capitol Hill.

Congressional ethics rules do not prohibit Collins and other members from investing in companies whose businesses overlap with the committees they serve on and the government agencies those committees oversee, legal experts said. Even so, they added, members must take care to disclose possible conflicts of interest because they can erode the public’s trust in government.

“Members should not have large holdings in health care stocks while serving on committees that oversee health policy,” said Richard Painter, former chief ethics lawyer for President George W. Bush.

Collins’ spokesman said his boss has done nothing improper.

“Congressman Collins is not going to apologize because a company he has a relationship with is attempting to help conquer cancer,” said Collins communications director Michael McAdams. “It’s sad the media is attempting to launch partisan attacks insinuating otherwise.”

‘I Talk About It All The Time’

Collins has been candid about his promotional efforts on Innate’s behalf.

In an interview with CNN, Collins said he often talks to people about Innate. “I talk about it all the time, just as you would talk about your children,” he said.

Last month, Collins was overheard by reporters boasting on a cellphone call just off the House floor about the “many millionaires” he had made talking up Innate, according to Politico.

Innate’s drug is an immune response stimulator discovered in the 1990s that had initially been developed as a potential treatment for HIV/AIDS or to boost the efficacy of childhood vaccines.

Founded in 2000, the company later tried MIS416 in a number of medical uses, but never found a marketable niche, Innate’s financial reports and news reports show.

Collins’ ties to Innate go back to 2005 — seven years before he was first elected to Congress — when the successful Buffalo businessman decided to invest after meeting Wilkinson while the CEO was in the U.S. seeking investors, Wilkinson said.

Collins joined the board in 2006 and the company first sold shares to the public in 2013. From 2013 to 2016, he bought Innate shares then worth between $3.5 million and $16 million and has not sold any, according to his congressional disclosure statements. Collins now owns nearly 38 million shares of the company, worth about $25 million based on the stock’s recent closing prices on the Australian stock exchange. That price peaked at $1.35 a share on Jan. 25 and is now under $1.

Innate has never had a revenue-producing product and has relied mainly on investor capital for funds. The congressman made four personal loans to Innate in 2012 and 2013 totaling $1.3 million that were later converted to shares and options to buy more shares at discounted prices, according to company financial reports.

Collins also promoted Innate among people in his professional and social circles, drawing investors whose share purchases have helped keep the company afloat.

Americans own 44 percent of Innate, according to a company-funded research report on its website. Many of those shareholders seem to come from an interconnected circle of prominent Buffalo investors with Collins at the center, based on company documents, congressional disclosure statements and political contributions reported in Federal Election Commission filings.

Investors who bought stock in two private placements by Innate have contributed at least $105,000 to Collins’ congressional campaigns, according to the Public Accountability Initiative in Buffalo, a nonprofit that investigates politics and government, which compared an Innate shareholders’ document with FEC filings.

One was Glenn Arthurs, an executive in the Buffalo office of UBS, the Swiss financial services giant. Another was Paul Harder, who runs a private investment firm in Buffalo, CHEP II. Arthurs and CHEP II both ranked among Innate’s top 20 shareholders last year, according to the company’s annual report. Both have also contributed to Collins since 1998, the year of his first — and unsuccessful — congressional campaign, FEC records show.

Collins’ congressional chief of staff, Michael Hook, who began working for Collins early last year, bought shares of Innate 28 times last year, according to his disclosure statements. Sometimes he purchased thousands of dollars of stock multiple times in a single day, those filings show.

Bill Paxon, a former congressman from Buffalo and a lobbyist whose clients include PhRMA, the major drug makers’ trade group, has invested in Innate. So has Lindy Ruff, the former coach of the Buffalo Sabres hockey team, who is now head coach of the Dallas Stars. Both were identified in a public company document for shareholders.

Ruff declined to comment on his Innate investment. Paxon, Arthurs, Harder and Hook did not reply to repeated requests from KHN for comment.

Mark Lema, Roswell’s head of anesthesiology, told The Buffalo News recently that he became an Innate investor after overhearing Collins discussing it at a meeting for Buffalo visitors that Collins hosted in Washington, D.C. But he’s never discussed Innate or MIS416 with study researchers at Roswell, he said in a subsequent interview with KHN.

A Complaint In Australia

Recent published reports in the U.S. detailing Collins’ ties with Innate are what provoked Sydney lawyer — and Innate shareholder — James Wheeldon to question Collins’ adherence to Australian securities laws, according to the 10-page letter that he sent Feb. 3 to Innate and the Australian Securities and Investment Commission.

Wheeldon alleged that Collins failed to disclose his large holdings in Innate to the Australian Securities Exchange within two business days of becoming a substantial stockholder, as the country’s law requires.

Stating that Collins owned more than 15 percent of the company before Innate went public in December 2013, Wheeldon alleged that Collins did not inform the exchange how much he owned until almost 18 months later.

Wheeldon also said that published reports about Collins’ “family, professional, political and financial relationships” with other Innate shareholders like Price had never been disclosed to the Australian financial market to his knowledge, “but rather has only come to light as a consequence of these press reports.”

Collins, his children, political allies and his donors control at least 27.25 percent of the company — giving Collins greater influence over the company than has been disclosed to shareholders, Wheeldon wrote.

“Mr. Collins duty is not to enrich the business and political elite of Buffalo, New York. His overarching duty is to the company,” read Wheeldon’s letter.

The stakes may be high, but the data from the Roswell study might not produce strong conclusions. Twelve people will be in the study, which is to be completed in August 2018, according a listing on clinicaltrials.gov. The start of the trial has been postponed five times since July and is now scheduled for this month. Recruiting for participants has not started yet, according to the listing.

Innate and Roswell began collaborating in 2009 and as both sides tell the story, Collins — the man who first connected the Australian biotech firm to Buffalo — had nothing to do with it. According to Roswell, the doctor running the trial, Kunle Odunsi, learned about MIS416 that year when Wilkinson, the CEO, pitched the drug at a presentation in Buffalo to prospective collaborators. Roswell researchers have been testing the vaccine in mice with tumors since first receiving the National Cancer Institute grant in 2011.

The trial is called an “investigator-initiated” trial, meaning that Odunsi has an agreement with Innate to explore the use of MIS416 for a cancer vaccine for free. Innate donates the drug, Roswell sponsors for the trial and if it’s successful, researchers could approach a medical journal to publish the results.

“A publication by a reputable clinical center (e.g., Roswell) in a prestigious journal […] would almost certainly increase off-label usage, thus increasing sales,” Kenneth Kaitin, director of the Tufts Center for the Study of Drug Development, wrote in an email.

Wilkinson said Collins has played no role in lining up the clinical trial at Roswell or getting the NCI funds to pay for it. McAdams, Collins’ spokesman, said Collins had “zero involvement” in the grant.

Categories: Health Industry, Syndicate

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Right-To-Die Fight Hits National Stage

Opponents of aid-in-dying laws are claiming a small victory. They won the attention of Congress this week in their battle to stop a growing movement that allows terminally ill patients to get doctors’ prescriptions to end their lives.

The Republican-led effort on Capitol Hill to overturn the District of Columbia’s aid-in-dying law could fail by Friday. But advocates worry the campaign will catalyze a broader effort to fully ban the practice, which is legal in six states and being considered in 22 more.

“The D.C. legislation has catapulted the issue of medical aid in dying onto the federal agenda at a time when Congress has the power to enact a ban on this end-of-life care option nationwide — even criminalizing the practice in the six states where this option is currently authorized,” warned Jessica Grennan, national director of political affairs and advocacy for Compassion & Choices, which supports right-to-die laws.

“If that happens, it will set the end-of-life care movement back to the last century,” Grennan said.

No matter how the effort plays out, both sides agree that the debate on Capitol Hill, featuring a Republican moral protest, could be only a taste of what’s to come.

In a vote that hewed closely to party lines, the Republican-controlled House Oversight Committee on Monday approved a bill that would knock down D.C.’s law, which won approval from the mayor and City Council in December. While D.C.’s law mirrors those passed in other states, Congress has unique power to intervene in D.C.’s affairs. Under the Home Rule Act of 1973, Congress has 30 legislative days to overturn any law D.C. passes.

“It’s of deep, personal moral conviction that I stand in opposition” to D.C.’s law, said Rep. Jason Chaffetz of Utah, who chairs the committee, in Monday’s hearing.

The clock is running out on his effort. Republicans in the House and Senate have introduced joint resolutions attempting to block D.C.’s law, but the bills would need to pass the full House and Senate and gain President Donald Trump’s signature. Trump has declined to take a public stance on the matter. If those steps don’t happen by Friday, D.C.’s law will take effect.

Dr. David Stevens, CEO of the Christian Medical & Dental Associations, which opposes medical aid in dying, said even if Republicans fail to overturn D.C.’s law, their efforts may have broader impact.

“As representatives and senators become more educated about the dangers of physician-assisted suicide,” Stevens said, “I wouldn’t be surprised” if members of Congress introduce laws to “prohibit or at least more closely regulate” the practice.

(Courtesy of Amazon.com)

(Courtesy of Amazon.com)

If Congress passes such a law, the only hope for advocates such as Grennan “would be for the Supreme Court to intervene,” she said. But she noted that Trump’s pick for the Supreme Court, Neil Gorsuch, a federal appellate judge on the U.S. Court of Appeals for the 10th Circuit, has published a book against aid-in-dying efforts. The book, she said, notes “the Supreme Court’s power to overturn the state medical aid-in-dying laws.”

Away from Capitol Hill, the aid-in-dying movement has gained steam: The practice is legal in Oregon, Washington, Vermont, Colorado, California and Montana.

Energized by victories in California and Colorado last year, aid-in-dying supporters are pushing ahead to battlegrounds nationwide. So far this year, 21 states have introduced aid-in-dying legislation, according to Compassion & Choices. And in South Dakota, proponents are trying to get the practice approved through a ballot initiative.

Hawaii, Maryland and Maine appear the most likely to pass new legislation this year, said Peg Sandeen, executive director of the Death With Dignity National Center, another national advocacy group.

But opponents have beaten back similar measures in many states in recent years. And in Alabama, South Dakota and New York, they have gone on the offensive, introducing bills to preemptively outlaw the practice or prohibit insurance from paying for the lethal drugs.

Chaffetz, who is leading the charge to overturn D.C.’s law, has enraged Democrats and D.C. officials, who accuse him of overreaching his power by meddling in local affairs. But Chaffetz and fellow House Republicans at Monday’s vote said moral concerns trump local autonomy.

“Only God gets to decide” when a person’s life ends, declared Rep. Paul Mitchell, a Michigan Republican, during the debate.

If Republicans fail this week, they could attack D.C.’s Death With Dignity law in April, when Congress approves D.C.’s proposed budget. D.C. has proposed to spend some local money to build a database tracking the assisted-dying program.

Republican Sen. James Lankford of Oklahoma, who introduced the Senate resolution blocking the bill, also made a legal argument, citing a 1997 law passed under President Clinton that bans the use of federal money for physician-assisted death. Because of that law, Medicare and the Department of Veterans Affairs do not pay for the lethal drugs, so patients must pay out-of-pocket or use private or state-funded insurance. Lankford challenged D.C. to show that its assisted-dying program wouldn’t conflict with that law.

Advocates dismissed that argument. Sandeen, of the Death With Dignity National Center, said D.C.’s program will not use any federal money to help people die. She called the legal argument a “red herring effort,” aimed at distracting attention from politicians’ true reasons for trying to strike down D.C.’s law.

“I’d rather that they said, ‘For religious purposes, I disapprove of this law,’” she said.

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Categories: Aging, Mental Health, Syndicate

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5 Reasons Why An $89K Drug Has Congress Fuming

The latest flashpoint in the ongoing debate over high drug prices is Emflaza, an $89,000-a-year drug that treats Duchenne muscular dystrophy.

People who have been watching the drug price issue closely, however, can reasonably ask why there is so much heat at that price tag? Late last year, two drugs went on the market for six-figure prices. Exondys 51 sells for $300,000 a year and Spinraza for a whopping $750,000.

While they did draw headlines, neither of those drugs sparked the bipartisan congressional firestorm and patient outcry that Emflaza ignited this week. Here are five reasons why:

1. It’s not a new drug.

Emflaza, the brand name for deflazacort, has never been approved for sale in the United States, but the steroid has been sold for decades in other countries — at much lower prices.

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Some Duchenne patients in the U.S. have imported deflazacort from Europe and Canada for years for just $1,000 to $1,600 annually. Mohammed Haider, 27, of Mount Laurel, N.J., said he’s been buying it from European pharmacies since he was seven years old.

In medical circles, deflazacort is often compared with the widely used steroid, prednisone, which has been around since 1955.

2. It’s not a scientific breakthrough.

Exondys 51 and Spinraza are medical breakthroughs that target genes to treat underlying diseases.

Emflaza, on the other hand, addresses symptoms of muscle weakness and deterioration by decreasing inflammation and suppressing the immune system in Duchenne patients.

Dr. Aaron Kesselheim, an associate professor of medicine at Harvard Medical School, questions why Marathon won approval using the Orphan Drug Act, which was created by Congress to motivate companies to develop drugs to treat rare diseases.

Instead, Kesselheim said, this is a steroid that could be used more broadly.

“There’s no indication to me that this is a steroid specific to muscular dystrophy,” he said.

Marathon had considered researching whether Emflaza could treat patients with juvenile arthritis, but the company said last week it has no plans to pursue that use.

3. Emflaza doesn’t work alone.

The drug needs to be part of a cocktail of drugs Duchenne patients take, said Pat Furlong, the founder of the advocacy group Parent Project Muscular Dystrophy. She questions how many high-priced drugs insurers will pay for.

“Where is the breaking point where any given insurer says [that’s] too much,” and stops covering the drugs, Furlong said.

Marathon said the price was set based on a number of factors, including recouping its research costs. The FDA required the drug to be submitted as a new drug — regardless of its approval in other countries. A company spokeswoman said Marathon funded 17 studies for Emflaza’s approval.

4. Marathon has cultivated relationships in the Duchenne patient community.

At a heated meeting with patient advocates on Monday, Marathon CEO Jeff Aronin announced a delay in the rollout of the drug and later released an open letter saying the company would “not move forward with commercialization” until discussing options with Duchenne community leaders.

The company, which is a corporate sponsor for Parent Project Muscular Dystrophy, announced it will continue offering an expanded access program to patients. He also said patients currently receiving the drug from other countries can continue importing.

Joel Wood, whose Duchenne foundation has received money from Marathon, said he believed the company will uphold financial promises to patients.

“I will be the first one to pick up a pitch fork” if the company fails to do so, said Wood, who has a son with Duchenne.

5. Timing is everything.

There was muted criticism when Spinraza’s $750,000 price was announced over the Christmas holiday.

Perhaps emboldened by President Donald Trump who recently said drug makers are “getting away with murder,” lawmakers from both sides of the aisle are expressing anger about Emflaza’s price and demanding answers from the drugmaker.

Rep. Robert Aderholt, a Republican from Alabama who chairs the subcommittee that oversees FDA’s appropriations, said Monday that Emflaza is a “tipping point” on the issue.

Last week, Republican Sen. Chuck Grassley, chairman of the Senate Judiciary Committee, announced he has opened an inquiry into potential abuses of the Orphan Drug Act that may have contributed to high prices on commonly used drugs.

Sen. Bernie Sanders (I-Vt.) and Rep. Elijah Cummings (D-Md.) sent a letter to Marathon Monday calling Emflaza’s price “unconscionable.” They asked the company to explain itself and lower the price.

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Categories: Cost and Quality, Health Industry, Syndicate

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Travel Ban Spotlights U.S. Dependence On Foreign-Born Doctors

Patients in Alexandria, La., were the friendliest people Dr. Muhammad Tauseef ever treated. They’d drive long distances to see him, and often brought gifts.

“It’s a small town, so they will sometimes bring you chickens, bring you eggs, bring you homemade cakes,” he said. One woman even gave him a puppy. “That was really nice.”

Tauseef was born and raised in Pakistan. After going to medical school there, he applied to come to the U.S. to train as a pediatrician.

It’s a path thousands of foreign-born medical students follow every year — a path that’s been around for more than half a century. And, like most foreign-born physicians, Tauseef came on a J1 visa. That meant after training he had two options: return to Pakistan or work for three years in an area the U.S. government has identified as having a provider shortage. He chose to work with mostly uninsured kids at a pediatric practice in Alexandria, La.

“That was a challenge,” he said, “but it was rewarding as well, because you are taking care of people who there aren’t many to take care for.”

The U.S. medical system depends on doctors like Tauseef, said Andrew Gurman, president of the American Medical Association. He worries that President Donald Trump’s executive order on immigration, which is now on hold after a federal appeals court ruling.

“International medical graduates have been a resource to provide medical care to areas that don’t otherwise have access to physicians,” he said. “With the current uncertainty about those physicians’ immigration status, we don’t know whether or not these areas are going to receive care.”

According to the AMA, about 280,000 international medical graduates practice in the U.S. today — that’s about one in four doctors. Some are U.S. citizens who’ve gone abroad for medical school, but most aren’t.

“They don’t all have permanent visas and so a lot of them are concerned about what their status is going to be, whether they can stay, whether they can go home to visit family and still come back, and the communities they serve have similar questions,” he said.

And the care is top-notch. A study just published in the journal BMJ shows Medicare patients treated by doctors from foreign medical schools get just as good care — and sometimes better — than those treated by U.S. medical graduates.

The uncertainty is hitting medical schools at a tough time of the year. Dr. Salahuddin Kazi is in charge of recruiting top students from across the world for the University of Texas Southwestern residency program.

“Typically we have 3,000 people applying for our 61 positions — of those 3,000, at least half of them are international medical graduates,” he said.

Applicants find out their program match in March and usually start working in June. That gives them about 90 days to get a visa. Kazi worries this year that won’t be long enough, and that students from countries included in the travel ban won’t be let in.

“That would create hardship for the hospital, for us, and for our remaining residents,” he said. “They’ll have to pick up more shifts or give up vacation.”

Two-hundred and sixty people have applied for residency in the U.S. from the seven countries included in the travel ban, according to the Association of American Medical Colleges.

Tauseef left Louisiana two years ago but continues to care for low-income patients at Los Barrios Unidos Community Clinic in Dallas. Six of the 30 physicians who work at this clinic are from other countries. Tauseef said they’re all educated to do the same thing.

“As a physician, being a foreign medical graduate, U.S. medical graduate, a Muslim doctor, a non-Muslim, we are trained to look for signs and symptoms,” he said, “We do not look at anybody’s color, we are not trained to look at anybody’s religion or ethnicity.”

Tauseef, who has been in this country for 13 years, will apply for U.S. citizenship next month.

This story is part of a partnership that includes KERA, NPR and Kaiser Health News.

Categories: Health Industry, Public Radio Partnership, Syndicate

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For California’s Smallest Businesses, Obamacare Opened The Door

If Republicans in Congress scrap the Affordable Care Act, Carmina Bautista-Ortiz might have to go back to Mexico for health care. But she’d rather spend the time running the printing shop she and her husband own in Jurupa Valley, a city about 50 miles east of Los Angeles.

For at least 10 years, before the Affordable Care Act made it possible for them to get insurance, Bautista-Ortiz and her husband Roger had been uninsurable — she because of a heart condition known as tachycardia, he because of high cholesterol.

Bautista-Ortiz crossed the border to get tests and specialty care for her rapid heartbeat. Her husband was slapped with a $20,000 hospital bill, which Carmina spent two years negotiating down until the hospital dismissed the debt.

Three years ago, the couple was finally able to buy subsidized health coverage through the state’s Obamacare exchange, Covered California, and Bautista-Ortiz said they now spend less time worrying about how to get care.

“Our health is … basically the most important thing that we have,” said Bautista-Ortiz. “If you’re not feeling well, you’re not going to do your job the right way.”

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Under Republican-led plans to repeal the Affordable Care Act, hundreds of thousands of self-employed people in California are at risk of losing their ability to buy affordable insurance. Some business owners welcome the rollback of the law, but the smallest of California businesses — entrepreneurs and contract workers who buy insurance on their own through Covered California — have the most to lose under a repeal.

That worries small business advocates who favor the Affordable Care Act. They say putting health care coverage out of reach of the self-employed could threaten Americans’ entrepreneurial spirit and burden people who create jobs and take on financial risk.

“When you’re providing a benefit that allows folks to take that risk with a little more of a safety net … that allows more entrepreneurs to take the plunge,” said Mark Herbert, California Director for Small Business Majority, an advocacy organization that opposes repeal.

Nationally, California has one of the highest rates of small business owners who get their coverage through a health insurance exchange — 16 percent — according to a U.S. Department of the Treasury analysis of 2014 data. And Covered California officials say nearly a quarter of enrollees — 377,000 people — declared themselves “self-employed” as of December. Enrollees receive an average of $440 a month in tax credits to help offset insurance premium costs, a spokesperson for the exchange said.

Herbert said rolling back subsidized health care and the no-exclusion policy for preexisting conditions could lead entrepreneurs to abandon their endeavors for more secure jobs, or prevent them from setting up shop in the first place.

“Uncertainty is very scary,” Herbert said. “There are enough variables and challenges that small business owners face,” said Herbert.

Other self-employed people say the looming repeal of Obamacare may not make them change careers, but it would change their relationship to health care.

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Charlie Murphy, a sewer pipe inspector in San Rafael, Calif., signed up for health insurance through Covered California last year. He recently lost 20 pounds after a doctor’s check-up. (Courtesy of Charlie Murphy)

Charlie Murphy, a sewer pipe inspector in Marin County, says if the hefty government subsidies that help him pay his monthly premium disappeared, he’d drop his coverage, or get a skeletal policy instead.

“My focus would be more [on] something catastrophic, than [a plan that supports] health maintenance,” said Murphy, 54, who pays a fraction of a monthly premium of roughly $500. The rest is subsidized with federal money.

When Murphy signed up for health care last year, he decided it was time for a check-up, the first in seven years. He barely interacted with doctors during the previous fifteen years, which he spent uninsured.

He was surprised to hear that his blood sugar and blood pressure were higher than they should be.

“I thought I was in better health than I was,” Murphy said.

The doctor’s visit — and a break up with a girlfriend — inspired Murphy to lose 20 pounds this past year. He cut down on smoking and drinking alcohol, and learned he can “survive without cookies and pie.”

He got some mental health treatment for anxiety, too, which improved his “outlook,” he said.

Although Obamacare may have made a notable impact on his health, he said he wouldn’t pay more for insurance or abandon his career to keep the same health care access he has now.

“I like working for myself, it’s nice … Driving around with the dog,” said Murphy, who performs site visits on homes for sale, inspecting sewage systems.

Just as each individual experiences the health care system differently, small business owners’ perspectives on Obamacare also vary widely and are influenced by ideological views and how much care costs.

sunder_vertical

Sunder Ramani, owner of Westwind Media in Burbank, Calif., pays the health care premiums for roughly a dozen employees who opt into his employer-sponsored plans. He says premiums he have been steadily increasing in recent years. (Courtesy of Sunder Ramani)

Sunder Ramani, who owns Westwind Media, a post-production company in Burbank, Calif., offers small group coverage to roughly a dozen employees, even though he’s not legally required to. He pays 100 percent of their premiums.

“I’ve been paying higher and higher premiums, but for what appears to be packages that are less and less attractive,” said Ramani. He is a member of the California Leadership Council of the National Federation of Independent Business, a conservative small business association which opposes the Affordable Care Act and sued to overturn the law when it was first passed.

Ramani said if his business revenue hadn’t grown over the past several years, he might have shifted more of the health cost burden onto his employees. While Obamacare may not be solely responsible for health cost increases, Ramani said, the law didn’t bring them down as much as it could have.

In California, premiums in the small group market have been going up, but recent premium hikes have been smaller than in previous years, according to data from one of California’s two insurance regulators, the California Department of Managed Health Care. Premiums grew by almost 10 percent for small employer plans in 2011, whereas this year, they rose less than 6 percent, according to the data.

Businesses with 50 or more workers have greater legal responsibilities under the Affordable Care Act. The health reform law requires them to offer employees affordable coverage or pay a penalty.

That employer mandate has created an administrative “headache” for small business owners, say the insurance agents who help them comply with new required paperwork.

What’s more, the new requirement on employers hasn’t increased the rate of people with job-based coverage, because most employers of that size already offered employee health care before Obamacare, according to researchers at the Urban Institute.

But to the individuals who run the smallest of California’s enterprises, the law gave them benefits that didn’t exist before — the guaranteed availability of insurance, and the financial support to pay for it.

The promised repeal of the federal health law, as well as other policy changes under President Donald Trump, is complicating Carmina Bautista-Ortiz’s decisions to hire more employees or offer health care to the two she currently has.

Right now, those two employees, hired late last year, are responsible for their own health care. One is covered through her husband, and Carmina suggested to the other that he find a policy on the open market.

Bautista-Ortiz plans to look into a group health policy and help her employees pay for coverage. But right now, she says, those decisions are on hold.

She’s not sure how a repeal of Obamacare would affect her business yet, but she knows it will affect her personally.

“We’re ready for the worst, and hoping for the best,” she said.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Categories: California, California Healthline, Covered California, Insurance, Repeal And Replace Watch, Syndicate, The Health Law, Uninsured

How Long You Stay On Opioids May Depend On The Doctor You See In the E.R.

Which doctor a person happens to see at a local emergency room can have long-term consequences when it comes to opioid use.

Within the same hospital, some doctors are three times more likely to prescribe an opioid than other doctors, and patients treated by high-prescribing doctors are more likely to become long-term opioid users, according to a study published Wednesday in the New England Journal of Medicine.

“Physicians are just doing things all over the map,” says Dr. Michael Barnett, an assistant professor at the Harvard T. H. Chan School of Public Health and one of the study’s authors. “This is a call to arms for people to start paying a lot more attention to having a unified approach.”

The study looked at how many opioid prescriptions emergency physicians gave to about 377,000 Medicare beneficiaries from 2008 through 2011. The lowest-prescribing quartile of doctors prescribed opioids to just 7 percent of patients, while the highest prescribed opioids to 24 percent — more than three times as often.

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Patients who saw a high-intensity prescriber were about 30 percent more likely to end up with a long-term opioid prescription of at least six months within the year following their hospital visit. They were also more likely to return to the hospital in the next 12 months with an opioid-related fall or fracture, a risk factor for seniors who take the powerful painkillers.

Overall, about one in every 48 Medicare patients prescribed an opioid in the study were likely to become a long-term opioid user.

There is a growing consensus among doctors that opioids have long been overprescribed. In 2010, there were enough prescriptions written to supply every American adult with hydrocodone for a month, according to the Centers for Disease Control and Prevention.

Part of the problem, Barnett believes, is that there isn’t enough guidance for doctors on when it’s appropriate to prescribe an opioid. Much of the evidence for when they are appropriate comes from small studies sponsored by drug companies.

“It’s kind of a grey area and there’s not very clear evidence around what you should do, so we use our own judgement. And there’s a huge gulf between what one doctor thinks and another,” Barnett explains.

Take, for example, a patient who comes to the emergency room complaining of back pain. There’s evidence that opioids are not necessary in that situation, but many doctors prescribe them anyway, said Barnett. “The world of pain treatment outside of opioids is limited and can take time to figure out. Opioids are an easy fix.”

The problem, he said, is that “even one prescription for opioids carries risks with it, that from my own experience as a provider, we tend to underestimate and under-explain to patients.”

“It is very, very plausible that well-intentioned but perhaps overly aggressive prescribing of opioids makes it likely that a patient will continue a medication long-term even if they don’t truly need it,” said Dr. David Juurlink, a professor of medicine at the University of Toronto. He was not involved in the study. “The doctors in the lowest quartile are the ones whose prescribing we should seek to be emulating.”

The study did not look at whether the opioids were correctly prescribed in each incidence. Dr. Carla Perissinotto, a geriatrician at the University of California San Francisco, worries that some of the doctors in the lowest quartile might be under-prescribing. “We have to be careful to not make assumptions too quickly and assume they’re bad prescribers, because it could be the opposite,” said Perissinotto, who also was not involved in the study.

Usually, a patient is prescribed just a handful of pills by a doctor at the emergency department to tide them over until the patient can visit his or her primary care physician.

But many primary care doctors simply refill the opioid prescription for another 30 days or longer, a phenomenon Barnett calls clinical inertia. “There’s this cognitive bias to keep going with the flow especially if the patient still feels they’re in pain.”

That can have long-term implications: One-third of people who have taken prescription opioids for at least two months say they became addicted to or physically dependent on them, a recent Washington Post-Kaiser Family Foundation survey found.

“We know there is a population of people who will potentially get addicted if they’re exposed to an opioid,” said Dr. Lewis Nelson, chair of the department of emergency medicine at Rutgers New Jersey Medical School, who was not involved with the study. “It’s a numbers game. The more people you expose, the more people you are likely to hit in that population likely to get addicted.”

Some hospitals are starting to help doctors prescribe opioids more judiciously. Many of those efforts have taken place after 2011, and therefore any changes would not be seen in the New England Journal of Medicine study.

For the past year, St. Joseph’s Regional Medical Center in New Jersey has been instructing doctors to prescribe opioids only as a last resort, said Dr. Mark Rosenberg, who runs the hospital’s emergency department and is on the board of the American College of Emergency Physicians. Rosenberg helped institute protocols that have doctors try other methods of pain relief first, such as a Novocain injection. In just over a year, the hospital has managed to reduce the number of opioid prescriptions written in the emergency room by 50 percent.

New York City and Washington state have also tried to introduce opioid prescribing guidelines into hospitals, and the ACEP expects to release new nationwide guidelines for emergency physicians in 2018.

Categories: Pharmaceuticals, Public Health, Syndicate

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New Rules Try To Shore Up Individual Health Insurance Market In 2018

While Congress continues to struggle with how to “repeal and replace” the Affordable Care Act, the Trump administration today unveiled its first regulation aimed at keeping insurers participating in the individual market in 2018.

“These are initial steps in advance of a broader effort to reverse the harmful effects of Obamacare, promote positive solutions to improve access to quality, affordable care and ensure we have a health system that best serves the needs of all Americans,” Tom Price, secretary of the Department of Health and Human Services said in a Twitter message.

But the new rule, which had been widely expected, was actually begun by the outgoing Obama administration. In part, it is an effort to address complaints by insurers that consumers were “gaming” the system to purchase coverage only when they were sick and then dropping it when they were healthy.

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To combat that, the regulation makes it harder for patients to sign up outside of annual open enrollment periods and would allow insurers to collect past-due premiums before starting coverage for a new year. It would also shorten the annual enrollment period by half, from three months to 45 days, ending right between Thanksgiving and Christmas. And it would give insurers more flexibility in the types of plans they offer and return regulation of the size and adequacy of health care provider networks to the states.

But it remains unclear whether the action will be too little, too late to ensure insurance is available next year. That would be necessary to keep congressional Republicans’ promises that people “do not get the rug pulled out from under them” during the transition to a new program, as House Speaker Paul Ryan (R-Wis.) says frequently.

On Tuesday, Humana announced it would stop selling policies in the health exchanges at the end of this year, and on Wednesday Mark Bertolini, the CEO of Aetna, suggested his firm might follow suit, repeating GOP charges that the individual market exchanges are in a “death spiral” where only sick people buy coverage.

While Humana was not a major player in the state exchange market — it only sold policies in 11 states for 2017 — its exit could leave at least 16 counties in Tennessee, including Knoxville, with no insurance company offering policies on the health exchange, according to data from the Kaiser Family Foundation. (KHN is an editorially independent program of the foundation.)

That alarmed Sen. Lamar Alexander (R-Tenn.), chairman of the Senate Health, Education, Labor and Pensions Committee, who has been one of the leading voices in Congress advocating a slower repeal and replace strategy.

“Yesterday’s news from Humana should light a fire under every member of Congress to work together to rescue Americans trapped in the failing Obamacare exchanges before they have no insurance options next year,” Alexander said in a statement.

Last year Aetna’s Bertolini also cited losses in the market as the reason for the company’s scaling back participation in the exchanges, although in an unrelated case, a judge’s ruling later said the decision had at least as much to do with pushing federal officials to allow Aetna to merge with Humana. On Monday that merger was officially called off after being blocked by a judge.

The new rules were greeted with cautious optimism by insurance industry trade groups.

“While we are reviewing the details, we support solutions that address key challenges in the individual market, promote affordability for consumers, and give states and the private sector additional flexibility to meet the needs of consumers,” Marilyn Tavenner, president and CEO of America’s Health Insurance Plans, said in a statement.

The Alliance of Community Health Plans, which represents nonprofit insurers, called the regulation “a promising first step.” But in a statement, president and CEO Ceci Connolly warned that the rule “does not resolve all of the uncertainty for plans and patients alike. Without adequate funding it will be extremely difficult to provide high-quality, affordable coverage and care to millions of Americans.”

Groups representing patients, however, were less happy with the changes. They argue that the rules could result in higher out-of-pocket costs.

Ron Pollack, executive director of the consumer group Families USA, said the new administration “is deliberately trying to sabotage the Affordable Care Act, especially by making it much more difficult for people to enroll in coverage.”

Sick people are likely to jump through any hoops required to get coverage, but healthy people are less inclined to sign up when it is more difficult. So by making it harder for healthy people to enroll, said Pollack, “they are creating their own death spiral that would deter young adults from gaining coverage, thereby driving up costs for everyone.”

And the American Cancer Society said that the new rules could hurt cancer patients in particular — for example, when they need to purchase new coverage after becoming too sick to work or moving to be closer to health providers. The proposed changes “would require documentation that is often challenging to quickly obtain,” and could “delay a patient’s treatment and jeopardize a person’s chance of survival,” said a statement from Chris Hansen, president of the society’s Cancer Action Network.

Unless the new administration changes the date, insurers must decide by May 3 if and where they will sell insurance for next year on the state exchanges.

Meanwhile, the Republican-led Congress remains in a deadlock between conservatives in the House, who want to repeal the health law as soon as possible, and moderates in the Senate like Alexander, who want to wait until there is agreement on what will replace it.

“We should just do what we said we would do,” Rep. Raul Labrador (R-Idaho) told reporters on Tuesday.

Conservatives say, at a minimum, Congress should pass the partial repeal bill it passed in 2015 that President Barack Obama vetoed. That measure would eliminate the expansion of the Medicaid program, financial help for people to purchase insurance, the penalties for not having coverage, and all the taxes that pay for the program, among other things.

“Why would it be difficult to get [the Senate] to vote for something they already voted for?” asked Rep. Mark Meadows (R-N.C.).

But congressional budget scorekeepers in January said that bill, which has no replacement provisions, could result in a doubling of premiums and 32 million more people without insurance.

And Republicans in the Senate, as well as President Donald Trump, continue to say that repeal and replace should take place simultaneously.

“I thought we were embarked on an effort to replace it,” said Sen. John McCain (R-Ariz.).

Categories: Insurance, Repeal And Replace Watch, Syndicate, The Health Law

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Individual Insurance Primer: Long Troubled Market At Center Of Drive For Repeal

As the country braces for a possible overhaul of the Affordable Care Act, consumers and patients are raising concerns that the more than 10 million people who purchased plans through the law’s insurance marketplaces could lose coverage. Some are also nervous that changes unleashed by any revamping of the law could throw insurance purchased by individuals outside of the marketplaces into jeopardy.

This individual insurance market has long been troubled with chronic problems, which helped propel efforts to pass Obamacare in 2010. Yet, consumers’ complaints about the resulting coverage have helped drive the Republicans’ arguments to dismantle the ACA.

Here is a primer on the individual insurance market and the potential consequences of repealing portions of the sweeping health law.

What is the individual insurance market?

It is used by people who do not have health coverage through the government or their employer when they purchase a plan directly from an insurer. It is sometimes called the non-group market.

These plans can be offered either on or off of the ACA marketplace, with the exception of the District of Columbia, which provides insurance solely through that marketplace.

What’s the difference between individual plans sold on the health exchanges and those sold outside the exchanges?

Plans sold on the health exchanges, also called marketplaces, provide several benefits to consumers. Enrollees earning up to 400 percent of the federal poverty level — about $47,500 for an individual and $97,200 for a family of four — qualify for a tax credit to offset the cost of the premiums. Additionally, many of the online portals allow consumers to compare plans side by side, helping buyers find a plan that fits their needs.

In contrast, plans purchased off the exchange do not qualify for the subsidies and are generally more expensive. However, the off-marketplace plans often offer broader benefits, particularly access to providers who are not part of the insurers’ networks. More than half of off-exchange plans gave customers some sort of out-of-network coverage, according to a Robert Wood Johnson Foundation analysis on the Health Affairs website, whereas just 36 percent of marketplace plans offered the same benefit.

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How many people use these individual insurance plans?

The number is relatively small — roughly 8 percent of the U.S. population in 2015 — but it has been growing since the health law made such coverage more accessible and barred insurers from denying coverage to people with pre-existing health conditions. Among the people who might turn to an individual plan are self-employed business owners, someone taking early retirement, an unemployed worker who loses his access to job-based insurance and young adults who no longer qualify for coverage under a parent’s plan.

According to the latest data, 10.4 million people purchased an individual plan through the marketplace in the first half of last year.

It is harder to pinpoint the number of people buying insurance off the marketplaces. The Department of Health and Human Services last October estimated that total at 6.9 million. In that same report, HHS estimated that 2.5 million of these consumers could have qualified for tax credits available if they had purchased marketplace policies.

How do you buy these plans?

Plans on the federal or state marketplace online can be purchased online and often through insurance brokers. Some areas also provide enrollment assistance through trained personnel, often referred to as health care navigators.

Off-exchange programs can be purchased directly through the insurer or a broker.

How much do these plans cost?

Insurers offering any plans on or off the marketplaces can set prices based solely on five factors: age, location, tobacco use, individual-versus-family enrollment and the plan’s category, which denotes how much of the medical expenses, on average, the plan covers. Plans are categorized by metal tiers, with bronze plans covering 60 percent of costs, silver plans 70 percent, gold plans 80 percent and platinum plans 90 percent.

On average, plans on the marketplace are generally less expensive than those sold off of it. According to the Robert Wood Johnson analysis, the average premium for off-exchange plans in 2016 was 13 percent more expensive and had higher deductibles than on-exchange policies.

According to the federal Centers for Medicare & Medicaid Services, which oversees the health law marketplaces, 84 percent of marketplace shoppers qualified for premium tax credits in October 2016. And those earning less than 250 percent of poverty ($29,700 for an individual) who purchase a silver plan also qualify for subsidies that help cover deductibles, copayments and other out-of-pocket expenses.

What are the concerns?

Prior to the ACA, consumers often found it difficult to get comprehensive coverage on the individual market, especially since insurers could refuse to sell to customers who had pre-existing conditions. About 18 percent of applicants were denied coverage because of those health problems, according to one study. A 2011 report by HHS found half of non-elderly Americans lived with a condition that could have barred them from obtaining insurance.

Insurers could also include exclusion riders. These provisions cut out coverage for treatments related to specific diseases.

Because of those problems, many people turned to poor quality plans that had limited coverage, sometimes without realizing that their policies wouldn’t provide adequate insurance. Those who had comprehensive insurance often found it to be expensive. In addition, in some areas few plans were offered.

Although the health law standardized the benefits that policies must offer, it did not solve some of this market’s problems. Insurers complained that they were losing money because the market was attracting too many sick people and not enough healthy ones to stabilize their risk pools, which help spread the costs among health and sick customers. Some companies exited the exchanges, cutting down on competition and consumer choice. This year, 89 insurers have left the marketplace, according to a November analysis by consulting firm McKinsey and Co.

Others increased their premiums, reduced their provider networks and set higher deductibles that patients had to pay out of pocket before their coverage kicked in. The price for the silver marketplace plans on which subsidies are pegged increased an average of 22 percent nationwide in 2017, according to HHS. Several states experienced sharper hikes, including Minnesota, where premiums increased 50 to 67 percent.

What happens if the ACA is repealed?

Most political observers believe that Republicans cannot repeal the entire law since they don’t have the 60 votes needed in the Senate to avoid a filibuster. As a result, GOP leaders are working to repeal portions of the law through a complicated process known as budget reconciliation, which requires a 51-vote majority. Provisions in a reconciliation bill can deal only with federal spending, so it might affect parts of the law such as those that set up the financial subsidies for exchange customers, the Medicaid expansion and the tax penalty for those who don’t get coverage.

The Republicans, however, have not yet come together on a plan for replacing those provisions with their alternatives, an effort that would be separate from the repeal legislation.

Many analysts suggest that the upheaval could push enough healthy individuals out of the marketplace plans to upset insurers’ risk pools. The change could also erode the exchanges by driving more insurers out of the marketplace. According to a report by the Congressional Budget Office, a Republican repeal plan vetoed last year by President Barack Obama would have resulted in 32 million Americans losing coverage by 2026.

An Urban Institute report found that if lawmakers go forward with their partial repeal and do not have adequate safeguards to help insurers keep healthy customers, “significant market disruption would occur,” including the loss of some insurers quickly.

But the shocks could also cause enough chaos that insurers would pull out of the entire market, said Paul Ginsburg, a professor of health policy and management at the University of Southern California.

“That would not only wipe out the coverage that the subsidies underwrote,” he said in reference to a partial repeal through reconciliation, “it would also wipe out the rest of individual market.”

Categories: Insurance, Repeal And Replace Watch, Syndicate, The Health Law

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Docs Bill Medicare for End-of-Life Advice As ‘Death Panel’ Fears Reemerge

End-of-life counseling sessions, once decried by some conservative Republicans as “death panels,” gained steam among Medicare patients in 2016, the first year doctors could charge the federal program for the service.

Nearly 14,000 providers billed almost $35 million — including nearly $16 million paid by Medicare — for advance care planning conversations for about 223,000 patients from January through June, according to data released this week by the Centers for Medicare & Medicaid Services. Full year figures won’t be available until July, but use appears to be higher than anticipated.

Controversy is threatening to reemerge in Congress over the funding, which pays doctors to counsel some 57 million Medicare patients on end-of-life treatment preferences. Rep. Steve King, R-Iowa, introduced a bill last month, the Protecting Life Until Natural Death Act, which would revoke Medicare reimbursement for the sessions, which he called a “yet another life-devaluing policy.”

“Allowing the federal government to marry its need to save dollars with the promotion of end-of-life counseling is not in the interest of millions of Americans who were promised life-sustaining care in their older years,” King said on Jan. 11.

While the fate of King’s bill is highly uncertain — the recently proposed measure hasn’t seen congressional action — it underscores deep feelings among conservatives who have long opposed such counseling and may seek to remove it from Medicare should Republicans attempt to make other changes to the entitlement program.

Proponents of advance care planning, however, cheered evidence of program’s early use as a sign of growing interest in late stage life planning.

“It’s great to hear that almost a quarter million people had an advance care planning conversation in the first six months of 2016,” said Paul Malley, president of Aging with Dignity, a Florida nonprofit. “I do think the billing makes a difference. I think it puts it on the radar of more physicians.”

Use of the counseling sessions are on track to outpace an estimate by the American Medical Association, which projected that about 300,000 patients would receive the service in the first year, according to the group, which backed the rule.

Providers in California, New York and Florida led use of the policy that pays about $86 a session for the first 30-minute office-based visit and about $75 per visit for any additional sessions.

The rule requires no specific diagnosis and sets no guidelines for the end-of-life discussions. Conversations center on medical directives and treatment preferences, including hospice enrollment and the desire for care if patients lose the ability to make their own decisions.

The new reimbursement led Dr. Peter Sutherland, a family medicine physician in Morristown, Tenn., to schedule more end-of-life conversations with patients last year.

“They were very few and far between before,” he said. “They were usually hospice-specific.”

Now, he said, he has time to have thorough discussions with patients, including a 60-year-old woman whose recent complaints of back and shoulder pain turned out to be cancer that had metastasized to her lungs. In early January, he talked with an 84-year-old woman with Stage IV breast cancer.

“She didn’t understand what a living will was,” Sutherland said. “We went through all that. I had her daughter with her and we went through it all.”

The conversations may occur during annual wellness exams, in separate office visits or in hospitals. Nurse practitioners and physicians’ assistants may also seek payment for end-of-life talks.

The idea of letting Medicare reimburse such conversations was first introduced in 2009 during debate on the Affordable Care Act. The issue quickly fueled allegations by some conservative politicians, such as former Republican vice presidential candidate Sarah Palin and presidential candidate John McCain, that they would lead to “death panels” that could disrupt care for elderly and disabled patients.

The idea was dropped “as a direct result of public outcry,” King said in a statement.

“The worldview behind the policy has not changed since then and government control over this intimate choice is still intolerable to those who respect the dignity of human life,” he said.

But in 2015, CMS officials quietly issued the new rule allowing Medicare reimbursement as a way to improve patients’ ability to make decisions about their care.

End-of-life conversations have occurred in the past, but not as often as they should, Malley said. Many doctors aren’t trained to have such discussions and find them difficult to initiate.

“For a lot of health providers, we hear the concern that this is not why patients come to us,” Malley said. “They come to us looking to be cured, for hope. And it’s sensitive to talk about what happens if we can’t cure you.”

2014 report by the Institute of Medicine, a panel of medical experts, concluded that Americans need more help navigating end-of-life decisions. A 2015 Kaiser Family Foundation poll found that 89 percent of people surveyed said health care providers should discuss such issues with patients, but only 17 percent had had those talks themselves. (KHN is an editorially independent program of the foundation.)

Use of the new rule was limited in the first six months of 2016. In California, which recorded the highest Medicare payments, about 1,300 providers provided nearly 29,000 services to about 24,000 patients at an overall cost of about $4.4 million — including about $1.9 million paid by Medicare.

The data likely reflect early adopters who were already having the talks and quickly integrated the new billing codes into their practices, said Dr. Ravi Parikh, an internal medicine resident at Brigham and Women’s Hospital in Boston, who has written about advance care planning. Many others still aren’t aware, he said.

Data from Athenahealth, a medical billing management service, found that only about 17 percent of 34,000 primary care providers at 2,000 practices billed for advance care planning in all of 2016.

The numbers will likely grow, said Malley, who noted that requests from doctors for advance care planning information tripled during the past year.

To counter objections, providers need to ensure that informed choice is at the heart of the newly reimbursed discussions.

“If advance care planning is only about saying no to care, then it should be revoked,” Malley said. “If it truly is about finding out patient preferences on their own turf, it’s a good thing.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Categories: Medicare, Syndicate

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Influence of GOP Doctors Caucus Grows as Congress Looks to Replace Health Law

The confirmation of Tom Price, the orthopedic surgeon-turned-Georgia congressman, as secretary of Health and Human Services represents the latest victory in the ascendancy of a little-known but powerful group of conservative physicians in Congress he belongs to — the GOP Doctors Caucus.

During the Obama administration, the caucus regularly sought to overturn the Affordable Care Act, and it’s now expected to play a major role determining the Trump administration’s plans for replacement.

Robert Doherty, a lobbyist for the American College of Physicians, said the GOP Doctors Caucus has gained importance with Republicans’ rise to power. “As political circumstances have changed, they have grown more essential,” he said.

“They will have considerable influence over the considerable discussion on repeal and replace legislation,” Doherty said.

Price’s supporters have touted his medical degree as an important credential for his new position, but Price and the caucus members are hardly representative of America’s physician in 2017. The “trust us, we’re doctors” refrain of the caucus obscures its heavily conservative agenda, critics say.

“Their views are driven more by political affiliation,” said Mona Mangat, an allergist-immunologist and chair of Doctors for America, a 16,000-member organization that favors the current health law. “It doesn’t make me feel great. Doctors outside of Congress do not support their views.”

For example, while the American College of Obstetrics and Gynecology has worked to increase access to abortion, the three obstetrician-gynecologists in the 16-member House caucus are anti-abortion and oppose the ACA provision that provides free prescription contraception.

While a third of the U.S. medical profession is now female, 15 of the 16 members of the GOP caucus are male, and only eight of them are doctors. The other eight members are from other health professions, including a registered nurse, a pharmacist and a dentist. The nurse, Diane Black of Tennessee, is the only woman.

On the Senate side, there are three physicians; all of them Republican.

While 52 percent of American physicians today identify as Democrats, just two out of the 14 doctors in Congress are Democrats.

About 55 percent of physicians say they voted for Hillary Clinton and only 26 percent voted for Donald Trump, according to a survey by Medscape in December.

Meanwhile, national surveys show doctors are almost evenly split on support for the health law, mirroring the general public. And a survey published in the New England Journal of Medicine in January found almost half of primary care doctors liked the law, while only 15 percent wanted it repealed.

Rep. Michael Burgess, R-Texas, a caucus member first elected in 2003, is one of the longest serving doctors in Congress. He said the anti-Obamacare Republican physicians do represent the views of the profession.

“Doctors tend to be fairly conservative and are fairly tight with their dollars, and that the vast proportion of doctors in Congress [are] Republican is not an accident,” Burgess said.

Price’s ascendancy is in some ways also a triumph for the American Medical Association, which has long sought to beef up its influence over national health policy. Less than 25 percent of AMA members are practicing physicians, down from 75 percent in the 1950s.

Price is an alumnus of a boot camp the AMA runs in Washington each winter for physicians contemplating a run for office. Price is one of four members of the caucus who went through the candidate school. In December, the AMA immediately endorsed the Price nomination, a move that led thousands of doctors who feared Price would overturn the health law to sign protest petitions.

Even without Price, Congress will have several GOP physicians in leadership spots in both the House and Senate.

Those include Rep. Phil Roe of Tennessee, the caucus co-chair, who also chairs the House Veterans Affairs Committee, and Burgess, who chairs the House Energy and Commerce subcommittee on health. Sen. Bill Cassidy of Louisiana sits on both the Finance and the Health, Education, Labor and Pension Committees. Sen. John Barrasso of Wyoming chairs the Senate Republican Policy Committee.

Roe acknowledges that his caucus will have newfound influence. Among his goals in molding an ACA replacement are to kill the requirement that most people buy health insurance (known as the individual mandate) as well as to end the obligation that 10 essential benefits, such as maternity and mental health care, must be in each health plan.

He said the caucus will probably not introduce its own bill, but rather evaluate and support other bills. The caucus could be a kingmaker in that role. “If we came out publicly and said we cannot support this bill, it fails,” Roe said.

The GOP Doctors Caucus has played a prominent role in health matters before Congress. For example, in 2015, when former House Speaker John Boehner needed help to permanently repeal a Medicare payment formula that threatened physicians with double-digit annual fee cuts, he turned to the GOP Doctors Caucus. It got behind a system to pay doctors based on performance — the so-called doc fix.

“When the speaker had a unified doctors’ agreement in his coat pocket, he could go to Minority Leader Nancy Pelosi and show that, and that had a lot to do with how we got this passed,” Roe said.

But not all doctors are unified behind the caucus. Rep. Raul Ruiz, one of the two physicians in the House who are Democrats, said he worries because few doctors in Congress are minorities or primary care doctors.

Ruiz, an emergency room physician from California who was elected in 2012, said he is wary about Price leading HHS because he is concerned Price’s policies would increase the number of Americans without insurance.

Indeed, many doctors feel the caucus’ proposals will not reflect their views — or medical wisdom. “My general feeling whenever I see any of their names, is that of contempt,” said Don McCanne of California, a senior fellow and past president of the Physicians for a National Health Program. “The fact that they all signed on to repeal of ACA while supporting policies that would leave so many worse off demonstrated to me that they did not represent the traditional Hippocratic traditions which place the patient first.”

Christina Jewett contributed reporting.

Categories: Syndicate, The Health Law

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Former FDA Chief Cites 5 Things To Watch On Drug Approvals, And Keeping Drugs Safe

The just-departed commissioner of the Food and Drug Administration has concerns about plans to speed up drug approvals and dramatically reduce regulations at the agency, as advocated recently by President Donald Trump.

Dr. Robert Califf, who stepped down last month, shared his thoughts about keeping Americans safe — and making sure drugs actually work — after about a year overseeing the federal agency. His takeaways:

1. Faster drug approvals, being advocated by Trump and others, don’t necessarily mean less expensive drugs.

“What I’m concerned about is that when people hear ‘faster approval,’ you get an image of the FDA sitting on this application and, you know, twiddling thumbs,” Califf said. “That’s not what happens.”

Califf explained that the slow part of getting a drug into patients’ hands happens well before the drugmaker submits an application to the FDA. It can take decades to discover, tweak and test a new drug molecule, and that development process is what needs a boost.

“The real action [happens] before the application gets submitted and that can be a time frame from years to decades as people try to figure out what will work and what will not,” Califf said.

Although faster drug development could bring development costs down, Califf said, “There’s not a direct relationship between the cost of development and the price of drugs or devices.”

“The concept of safety is much more complex than most people think about until they look into it deeply,” said Robert Califf, just-departed FDA administrator. (Courtesy of the FDA)

“The concept of safety is much more complex than most people think about until they look into it deeply,” said Robert Califf, just-departed FDA administrator. (Courtesy of the FDA)

2. A law passed in December should streamline drug approvals — in a positive way.

The 21st Century Cures Act, a bipartisan bill signed by President Barack Obama late last year, is a “very well-rounded piece of legislation that will speed up product development.”

To begin with, it encourages the FDA to consider pieces of information in its approval process in addition to traditional clinical trials, including “real world evidence” and biomarkers. Biomarkers are used in studies in place of outcomes that are more difficult to measure. For example, tumor shrinkage is sometimes a biomarker for surviving cancer.

“Using real world evidence in clinical trials is one that I’m particularly excited about as a way to get better answers at a lower cost and faster at the same time,” Califf said.

3. But Califf has concerns about maintaining drug safety standards and ensuring thorough clinical trials.

“The concept of safety is much more complex than most people think about until they look into it deeply,” Califf said. “All drugs have risk. None of them are absolutely safe. And the actual safety risks are only revealed through clinical trials with the same quality and number of patients involved as it takes to look at efficacy.”

About 92 percent of drugs that get into human clinical trials don’t make it to market because they fail to show any benefit or, worse, they have unexpected toxicity, he said.

“Declaring a drug is safe after very little information is treacherous,” Califf said.

Califf recently wrote for JAMA on the FDA’s balancing act of protecting the public and encouraging innovation. And the FDA released a paper last month documenting examples of a promising drug, vaccine or device that each did well in a Phase 2 clinical trial but “bombed out” in Phase 3, Califf said. Drugs typically go through three “phases” of studies called clinical trials before gaining FDA approval. With each new phase, researchers test drugs or other products on more people and on more measures of safety and effectiveness.

“It’s 22 examples of why it’s a big mistake to think that you can judge the balance of risk and benefit from a small amount of data,” Califf said.

4. Faster, better drugs can’t be approved if the FDA is understaffed, he argued.

Califf called a potential FDA hiring freeze “unfortunate” and said new staff is needed to meet the faster approval timelines and to give advice to those developing drugs so “bad mistakes” aren’t made.

The FDA has been steadily hiring staff to keep up with the growing industry it oversees. But hundreds of openings are still left to be filled.

Califf said the drug industry’s most valued interaction with the FDA is “during the process of [drug] development,” which begins before a drug application is submitted for approval. FDA staff can provide timely feedback and advice that can help a company choose the right studies needed for approval and, effectively, speed up drug development.

“A hiring freeze at this time when we are just revving up with 21st Century Cures is unfortunate. I hope that the dust will settle soon and the FDA can get back to its hiring,” Califf said.

5. The FDA is using big data to track the safety of drugs already on the market — and it plans to do that a lot more.

The FDA has an established adverse event database but after pain reliever Vioxx was pulled from the market in 2004, the agency began working on a system called Sentinel.

The initiative uses claims data to look at drug safety. It has 180 million individual electronic records and tracks every dispensed prescription, hospitalization as well as serious outcomes, Califf said. In addition, Sentinel is now being opened up to industry and academia.

“It’s used every day by the FDA,” Califf said, adding that the system is “getting better and better.”

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Categories: Pharmaceuticals, Syndicate

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Judge Upends Effort To Limit Charity Funding For Kidney Patients’ Insurance

Every night, Jason Early attaches a catheter in his chest to a machine by his bed that, over the course of nine hours while he sleeps, removes his blood from his body, cleanses it and returns it because his kidneys are no longer able to do the job.

It’s been about 18 months since the 28-year-old Dallas resident started getting dialysis after his kidneys failed as a complication from the Type 1 diabetes with which he was diagnosed as a child.

Like many patients with end-stage renal disease, Early, who is completing a bachelor’s degree in finance at the University of North Texas at Dallas, turned to a charity for financial assistance to cover his health insurance costs.

Michelle AndrewsInsuring Your Health

Such “third-party payments” by nonprofit groups, health care providers and others are controversial. The federal government has expressed concern that providers and organizations they’re affiliated with might be inappropriately “steering” patients to marketplace plans instead of Medicare or Medicaid, for which they are often eligible. The public programs reimburse for the dialysis services at lower rates than most private plans. The efforts by charities have also long been a sore spot with health insurers, who say they encourage sick patients who have expensive health care needs to opt for private coverage.

Insurers suffered a setback recently when a federal judge temporarily blocked a new rule from the Department of Health and Human Services that was set to go into effect Jan. 13. It would require that dialysis centers inform insurers if the centers are making premium payments either directly or indirectly through a third party for people covered by marketplace plans. Insurers would then have the option of accepting or denying the payments.

In granting the preliminary injunction last month, U.S. District Court Judge Amos Mazzant in Sherman, Texas, criticized the government’s administrative process for establishing the regulation and said it hadn’t considered the benefits of private individual insurance or the fact that the rule would leave thousands of patients without coverage.

Jason Early has been getting dialysis for about 18 months and he turned to a charity to help cover his health insurance premiums. (Courtesy of UNT Dallas Marketing Communications | untdallas.edu)

Jason Early has been getting dialysis for about 18 months and he turned to a charity to help cover his health insurance premiums. (Courtesy of UNT Dallas Marketing Communications | untdallas.edu)

Insurers were not pleased. “Inappropriate steering and third-party payments increases costs for all consumers, and it risks harm to patients who are often eligible for public coverage options,” said Kristine Grow, a spokesperson for America’s Health Insurance Plans, an industry group. “We continue to urge [the Department of Health and Human Services] to prohibit these payments when there is alternative coverage for patients.”

But patient advocates were delighted. “We thought this was an important win for dialysis patients because it not only spoke to the procedural elements of the rule but to the substance, the potential of dialysis patients to have their coverage taken away,” said Hrant Jamgochian, the chief executive of Dialysis Patient Citizens, an advocacy group and the lead plaintiff in the lawsuit.

Premium assistance has been critical to improving Early’s quality of life. “Without the [American Kidney Fund] assistance I would be living to pay my medical costs,” he said. “They give me an opportunity to get a breather from medical costs so that I can live my life outside of my illness.”

Although some patients, such as Early, are able to undergo dialysis at home, many must spend four hours at a dialysis center three times a week. The process is debilitating and time-consuming.

Many people lose their employer-sponsored health insurance because they are unable to work. Medicare is often an alternative because under the law, people with end-stage renal disease — even those younger than 65 — are generally eligible for coverage.

Others may sign up for private coverage on the exchanges. Some may qualify for Medicaid.

Advocates for kidney patients say coverage on the individual market is better than Medicare for some people. In marketplace plans, the maximum amount that someone can be required to pay out-of-pocket for covered services in 2017 is $7,150. But there’s no cap on beneficiaries’ spending in Medicare, and patients are on the hook for 20 percent of the cost for doctor visits and other outpatient services such as dialysis. Supplemental “Medigap” plans can help cover out-of-pocket costs, but 23 states don’t require insurers to sell those plans to people with end-stage renal disease who aren’t yet 65.

Last year, Early bought an Aetna silver plan with a $1,500 deductible and a $6,000 out-of-pocket maximum on the Texas health insurance exchange. The American Kidney Fund paid the $359 monthly premium. The policy covered all of his diabetes drugs and equipment. By the end of the first month of dialysis copayments, Early reached his spending maximum and the plan paid everything after that.

But Aetna exited several marketplaces this year, including Texas, and Early signed up for Medicare in January. Now he’s responsible for a $134 monthly Part B premium, $65 for his prescription drug plan and $300 a month in copays for drugs. Medicare doesn’t cover the insulin pump he uses, so he’ll have to pay $300 monthly out of pocket for that too. At the moment he’s also paying $478 each month for the basic Medigap “A” supplemental plan available in Texas to patients younger than 65 with end-stage renal disease. The Medigap plan covers his 20 percent coinsurance payments for dialysis and other outpatient care.

He said he’s been told that the American Kidney Fund, a charity that provides assistance to about 20 percent of the more than 450,000 people who are on dialysis and receives funding from dialysis providers, will start picking up his Medigap premiums soon. He hopes so.

“I miss my Aetna plan,” he said.

Sixty percent of the people who receive premium assistance from the American Kidney Fund get help with their Medicare or Medigap plans rather than marketplace or other private coverage, said LaVarne Burton, the president and CEO. Even though the judge’s order doesn’t apply to people in public plans, she hopes it will discourage insurers that are increasingly erecting barriers to third-party payment.

“We want to protect the ability that these individuals have to make the choice that meets their needs,” Burton said.

Please visit khn.org/columnists to send comments or ideas for future topics for the Insuring Your Health column.

Categories: Health Industry, Insurance, Insuring Your Health, Medicare, Syndicate

Drugmaker Marathon ‘Pausing’ Delivery Of $89,000-a-year Muscular Dystrophy Drug

In a surprise move Monday, Marathon Pharmaceuticals told patient advocates that it would “pause” the launch of their drug Emflaza because of pricing concerns expressed by patients and advocacy groups.

The drugmaker had announced an $89,000 annual price tag for their newly-approved drug last week — but patients and lawmakers immediately cried foul.

“What you’re doing is robbing my insurance company,” said Dana Edwards, a mother from New Jersey whose 12-year-old has taken deflazacort, the generic version of the drug, since he was five years old.

Newly approved Emflaza treats Duchenne muscular dystrophy, a rare, devastating neuromuscular disorder. Patients have been importing the generic version of the drug from overseas for about $1,200 a year.

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A statement read to a conference of parents, patients and advocates in Washington, D.C., and attributed to Marathon CEO Jeffrey Aronin said: “Our goal in commercializing Emflaza all along has been to make it available to that broader set of patients who prior to FDA approval have not had access to the therapy… We are pausing our launch, which has not yet taken place. We have not sold any new product and will pause that process.”

Pat Furlong, the president and founder of Parent Project Muscular Dystrophy, which sponsored the Monday morning conference, read the statement to an outraged crowd in a conference room at the Mayflower Hotel.

The company will continue to offer patients an expanded access program, Furlong read, which allows about 800 patients to receive the drug from the company. More can join that program for free, and patients can continue importing drugs from Canada or “wherever they are getting it,” the statement said.

Furlong told the audience that complaints from patients helped to prompt Marathon’s action: “Since last week’s approval, they’ve heard from all of us,” he said.

Late Monday, Marathon released a statement and open letter to the Duchenne community, elaborating on its goals of patient access and promising that “price should not be a barrier.”

“Put simply we expect patients will pay a standard copay of typically $20 or less per prescription,” the statement reads.

A Marathon Pharmaceutical executive speaks at the Parent Project Muscular Dystrophy advocacy conference. (Sarah Jane Tribble/KHN)

A Marathon Pharmaceutical executive speaks at the Parent Project Muscular Dystrophy advocacy conference. (Sarah Jane Tribble/KHN)

The company also heard from Capitol Hill. On Monday morning, Sen. Bernie Sanders, I-Vt., and Rep. Elijah Cummings, D-Md., sent a letter to Marathon demanding answers about the $89,000 price tag for a drug that has been routinely used by Duchenne patients since at least 2005.

“We believe Marathon is abusing our nation’s ‘orphan drug’ program, which grants companies seven years of market exclusivity to encourage research into new treatments for rare diseases — not to provide companies like Marathon with lucrative market exclusivity rights for drugs that have been available for decades,” Sanders and Cummings wrote.

Orphan drugs are medicines targeted at people with rare diseases, which often carry very high price tags. Emflaza was approved last Thursday for treating Duchenne disease. The drug is a steroid that manages symptoms for Duchenne’s sufferers; it does not cure the underlying disease.

In January, Kaiser Health News published an investigation that found that the orphan drug program intended to help desperate patients is being manipulated by drugmakers. While the companies aren’t breaking the law, they are using the Orphan Drug Act to secure lucrative incentives and gain monopoly control of rare disease markets, the investigation found.

Republican Rep. Robert Aderholt, the chairman of the Appropriations subcommittee that funds the FDA, said the 6000 percent increase in deflazacort’s price “makes me question whether the current construct of how FDA approves orphan drugs does more harm than good if companies have found a way to game the system.”

In addition to orphan status, the FDA gave Marathon a rare pediatric disease priority review voucher, which the company can sell for millions of dollars to another drugmaker who can use it to expedite their own drug’s approval.

At Monday’s meeting, Marathon executives presented a slideshow to a packed room that detailed different patient financial assistance programs as well as the drug’s expected availability. Emflaza was expected to be on the market by mid-March, said Eric Messner, vice president of sales and marketing for Marathon.

Messner explained that the drug would cost between $50,000 to $54,000 after rebates and discounts. And he emphasized that Marathon did not expect patients to pay that price. “We expect that patients will experience a low or zero out-of-pocket experience. I know there has been a lot of discussion about that. How did we arrive at the price?” Messner said. An audience member interrupted Messner asking if the company had talked to patients and families about the price.

He offered assurance that they did and said there would be an ongoing dialogue with patient groups.

Edwards, the New Jersey mother, said she hopes President Donald Trump will fulfill his vow to bring down high drug prices.

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Categories: Pharmaceuticals, Syndicate

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Death Doesn’t Have To Be So Scary

Since he watched his mother drop dead, Richard Bridgman’s fear of death has left him emotionally paralyzed.

It was right around Thanksgiving — nearly 45 years ago — and Bridgman was sleeping overnight on his mom’s living room couch.

“In the middle of the night, she walked into the room and said, ‘Richard, I’m dying,’” recalls Bridgman, who tried to reassure his mom that she’d be okay. But his mother, who had a heart condition, was suffering a massive heart attack. “She looked at me and fell over on her head. I didn’t know what to do. She was dead.”

Death haunted much of Bridgman’s early years. His stepfather died when Bridgman was 15. His father, an alcoholic, died when Bridgman was 17. And Bridgman was 26 when his mom died before his eyes. Now, 72, and long retired from the bill collection business he once owned in the Springfield, Ill., area, he has spent most of his adult years trying to cope with — if not overcome — his immense fear of death.

“Death became an obsession,” he said. “No matter where I went or what I did, death was always in the back of my mind.”

Most people prefer not to think about death, much less plan for it. In a tech-crazed world, where time is commonly measured in 140 characters and 6-second sound bites, life would appear to be dissected into so many bite-sized morsels that discussion of death doesn’t even seem to fit into the equation.

Kelvin Chin (Courtesy of Kelvin Chin)

Kelvin Chin (Courtesy of Kelvin Chin)

“Everybody has a fear of death, no matter what culture, religion or country they come from,” said Kelvin Chin, author of “Overcoming the Fear of Death” and founder of the Overcoming the Fear of Death Foundation and the non-profit turningwithin.org. “Fear is simply an emotion caused by the anticipation of unhappiness.”

But wait. What if death isn’t actually unhappy? What if it simply — is? For Bridgman, whose fear of death was overwhelming, that simple question was a critical step in learning to emotionally deal with death. That question was posed to him by Chin, who he discovered via a Google search. Several supportive phone consultations with Chin — combined with a simple meditation process that Chin teaches — have helped to keep Bridgman’s fears under control.

“I spent so much money on psychiatrists and psychotherapists — none of them did any good,” says Bridgman. But Chin steered Bridgman towards meditation. “Meditation is better than medicine,” Bridgman said.

Everyone must figure out their own way to handle the fear of death. One expert, who overcame her own fear through years of attending to the dying, says death is rarely the terrible thing that most folks fret about.

“Death is usually a peaceful process,” explains Donna Authers, a professional caregiver, motivational speaker and author of the book “A Sacred Walk: Dispelling the Fear of Death and Caring for the Dying.”

“Very few people die screaming. They just go to sleep.”

But it took Authers years to learn the lesson that death need not be frightening. As a child, death haunted her. When she was two years old, her father was killed in World War II. Her mother, who had remarried, died on Authers’ fifth birthday. “Instead of a birthday party, I woke up to the worst day of my life,” she said. Her grandfather committed suicide when Authers was 15.

Donna Authers (Courtesy of Donna Authers)

Donna Authers (Courtesy of Donna Authers)

It was Authers’ grandmother — while dying from cancer — who taught Authers the most critical lesson in accepting death’s inevitability. Authers brought her grandmother home to tend to her during her final days. But her grandmother could sense her granddaughter’s terrible fear.

That’s when her grandmother took her by the hand and, unafraid, reminded Authers, “Death is part of life. You, too, will be where I am someday, and you can’t face death with fear,” she said. That changed everything. Seeing her grandmother bravely face death caused her own fears to dissolve. “I was no longer afraid of death and dying,” recalls Authers.

Authers ultimately left her job as an IBM marketing executive to become a caregiver. Through the years, she has found that faith is the most important quality among those who face death without fear. “People who have faith in something don’t grieve like those who have no hope,” said Authers.

Increasingly, however, Chin has found that Millennials — more than any other demographic — fear death the most.

“It’s the downside of social media,” said Chin. “The bombardment and speed of communication leads to an overload that can trigger a fear of death.”

Perhaps even the world of politics can play a role, suggests Sheldon Solomon, professor of psychology at Skidmore College and author of “The Worm at the Core: On the Role of Death in Life.”

In times of political upheaval— particularly when people are reminded of their mortality — the fear of death increases even as they tend to be attracted to political figures who promise them more security, said Solomon, who has conducted numerous experiments on this issue.

“When people are reminded of their own mortality, in an effort to bolster faith in their own view of reality, they become more hostile to anyone who is different.”

Even then, says Solomon, perhaps nothing alleviates a dying person’s fear of death more than love.

A terminally-ill grandmother he knew was distraught at the prospect of death. No doctor and no medicine could help her. Then, she received a short phone call from her granddaughter, begging her for her cupcake recipe. “No one can make them like you,” her granddaughter said.

“That call did more in five minutes than anything else could have,’” says Solomon. “It reminded the grandmother that she will live on in the memories of the people she loves. That was all she needed to know.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Categories: Public Health, Syndicate

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California Reports Thousands Of Workers Exposed To Elevated Lead Levels

More than 6,000 California workers in munitions, manufacturing and other industries have elevated levels of lead in their blood that could cause serious health problems, according to a recent report from the state’s public health agency.

The report, containing the results of tests conducted between 2012 and 2014, comes as the state’s workplace health and safety agency, Cal/OSHA, is considering a major update of its safety standards for workplace lead exposure for the first time in decades. The current standards are based on 35-year-old medical findings, which at the time did not recognize the dangers of even low-level exposure to lead. More recent science shows chronic, low-level lead exposure can cause lasting harm.

“It doesn’t surprise me. This is a huge problem,” said Doug Parker, executive director of Worksafe, a worker health and safety advocacy organization based in Oakland. “Clearly, there haven’t been adequate actions taken” by some employers, he said.

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Lead is a naturally occurring element. The soft gray metal and its various compounds have been used in many products, including pipes, paint, batteries, ammunition, industrial equipment and gasoline. Workers can be exposed to lead in the form of dust, either inhaled or swallowed, or by handling lead-tainted items.

Most public health actions have focused on protecting children from lead exposure and quickly treating those who are exposed, since the metal can severely impair their development.

But adults also can face serious health problems from lead exposure, including heart disease, reproductive problems, cognitive difficulties and kidney failure. Some workers exposed to lead dust in the workplace have unwittingly carried it home on their clothes, exposing their families to it.

The authors of the report examined data from the California Occupational Blood Lead Registry, which tracks workplace exposures. From 2012 to 2014, 38,440 workers had their blood tested for lead, and 6,051 workers were identified with an elevated level of 5 or more micrograms of lead per deciliter (about 3.3 ounces) of blood. Most of these workers were men between the ages of 20 and 59 and had Hispanic surnames. Many lived in Southern California, particularly in Los Angeles, Riverside and San Bernardino counties.

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The California Department of Public Health, which released the report last month, did not make an expert available for comment.

About 14,000 of the workers had two or more blood lead tests, which showed about a fifth of them had elevated blood lead levels, according to the report. More than one elevated blood test suggests chronic exposure linked to health problems, the researchers noted.

About 60 percent of workers with higher exposures — above 10 micrograms per deciliter of blood — worked in manufacturing, for companies that make and recycle batteries, aircraft and aircraft parts, ships, plumbing and pipefitting fixtures, and metal valves, according to the report. Workers with the highest blood lead levels — 40 micrograms or more per deciliter — mostly worked at shooting ranges or in ammunition manufacturing, gun repair, and firearm instruction, although some worked in other metal industries, painting and construction.

A spokesman for the California Manufacturers and Technology Association Association said the industry group did not have a position on workplace lead exposure, and a representative for the Sacramento-based State Building and Construction Trades Council did not respond to a request for comment.

California requires employers to provide testing for workers if their work uses or “disturbs” lead (such as removing lead paint from a home) and to take steps to minimize lead dust and fumes.

State researchers warned that there are many other workers who may be exposed to it but are never tested. While battery manufacturers and ammunition manufacturers may routinely test their workers, many other companies, including foundries and painting contractors, do not, the researchers noted.

“The result of this large testing deficiency is that we do not know the true numbers of California workers with elevated” blood lead levels, the researchers wrote.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

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Obamacare Came To Montana Indian Country And Brought Jobs

The Affordable Care Act created new health coverage opportunities more than half a million Native Americans and Alaska Natives — and jobs have followed on its coattails.

In Montana, this is playing out at the Blackfeet Community Hospital. It’s the only hospital on the Blackfeet reservation, and has been mostly funded — and chronically underfunded — by the Indian Health Service, which has been in charge of Native American health care since its founding in the 1950s. But now, many Native Americans have been able to afford health insurance on the Obamacare exchange, and last year, Montana expanded Medicaid. Now, about one in seven reservation residents gets Medicaid.

Blackfeet Community Hospital needed to build an infrastructure to deal with the byzantine bureaucracy that comes with taking Medicaid and private insurance. The tribe’s community college started a new curriculum to help meet the growing demand for people in Indian country to process insurance claims.

Blackfeet tribal member Gerald Murray took the courses. “I got a contract before I graduated in April, and then the day of graduation in May it became permanent so I applied for it,” he said.

Murray’s experience is an example of the health care law’s transformative power in Native American communities, said Montana’s director of American Indian Health, Mary Lynn Billy-Old Coyote.

“To me, there’s opportunity there to not only build health care, but to build your entire community and build jobs,” said Billy-Old Coyote.

Unemployment on most of Montana’s Indian reservations is at least double the rest of the state. And people who are working don’t always get health insurance with their jobs. So ACA subsidies that bring down the cost of insurance premiums are a big deal, Billy-Old Coyote said. Most Montanans, Native or not, can now get policies for about $75 a month. It is a big change for the reservation communities where people are accustomed to the underfunded IHS, which often didn’t pay for care unless someone was in immediate danger of losing life or limb.

(Courtesy of Mary Lynne Billy-Old Coyote)

(Courtesy of Mary Lynne Billy-Old Coyote)

“Now you’ve got an opportunity for American Indian people to truly have access to private insurance,” she said. “You have access to greater networks of providers and specialists, and all the things we generally don’t see you have access to.”

Medicaid expansion had a lot to do with the number of health care jobs in Montana growing by 3 percent last year, according to state statistics. And schools in Montana, including tribal colleges, are offering more classes in health care fields.

At Blackfeet Community College, 23-year-old Leroy Bearmedicine is working toward certification as an emergency medical technician.

“I’d like to become a registered nurse at some point, maybe even work my way up to flight nurse — something to get the adrenaline going,” he says.

Native American leaders have seen the Affordable Care Act as a means to remedy a series of broken promises by the federal government to care for them. They now fear that promise, too, will fade. One estimate suggests Montana will lose 3,000 health care jobs if the Affordable Care Act is repealed.

This story is part of a reporting partnership with NPR, Montana Public Radio and Kaiser Health News.

Categories: Medicaid, Public Radio Partnership, Repeal And Replace Watch, Reporting Consortium, Syndicate

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California Regulator Slams Health Insurers Over Faulty Doctor Lists

California’s biggest health insurers reported inaccurate information to the state on which doctors are in their networks, offering conflicting lists that differed by several thousand physicians, according to a new state report.

Shelley Rouillard, director of the California Department of Managed Health Care, said 36 of 40 health insurers she reviewed — including industry giants like Aetna and UnitedHealthcare — could face fines for failing to submit accurate data or comply with state rules.

Rouillard said she told health plan executives in a meeting last week that such widespread errors made it impossible for regulators to tell whether patients have timely access to care in accordance with state law.

“I told the CEOs it looks to me like nobody cared. We will be holding their feet to the fire on this,” Rouillard said in an interview with California Healthline. “I am frustrated with the health plans because the data we got was unacceptable. It was a mess.”

The state wasn’t assessing the accuracy of online provider directories that are used by consumers. But the new report suggests that insurers may be misrepresenting which providers they have under contract or are unable to collect accurate information.

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Flawed provider directories are a longstanding problem industrywide, and the proliferation of narrow networks on the Obamacare insurance exchanges and in employer health plans has sparked numerous consumer complaints.

Outdated and inaccurate provider lists can hinder patients from getting treated and, in some cases, lead to huge unforeseen medical bills when people unwittingly go out of network for care.

California officials discovered the latest problems while reviewing annual reports filed by insurers. In those reports, insurers submitted two sets of provider lists, one used during the year to measure patient access and the other a year-end tally. Often they were dramatically different.

UnitedHealthcare, the nation’s largest health insurer, listed 9,135 primary-care doctors on the provider list used during the year who were absent from year-end list — a discrepancy of 45 percent.

Cigna, another big insurer, named 8,572 on the one list who were not on the other, a 36 percent discrepancy. For Anthem Blue Cross, the discrepancy was 8,165 primary-care physicians, or 36 percent, and for Blue Shield of California it was 4,371 primary-care doctors, or 22 percent.

In another instance, the state said Aetna counted the same cardiologists in one county more than 160 times, inflating the number of specialists overall by 2,293. That overstated the list of specialists by 82 percent.

Overall, for seven insurers, the two sets of lists differed by 50 percent or more for in-network specialists.

Rouillard said provider directories can fluctuate over time, so some small variations between one list used during the year and another at year’s end would be expected. But she said the wildly different figures that were reported raised red flags and made it impossible to know whether enough doctors were available to see patients.

Some of these issues are not new. In 2015, California’s managed care agency fined Anthem $250,000 and Blue Shield of California $350,000 for overstating the breadth of their doctor networks.

Both Anthem and Blue Shield of California declined to comment on the state’s most recent findings. Aetna said it was still reviewing the state’s analysis.

Other health insurers referred questions to an industry trade group. Charles Bacchi, chief executive of the California Association of Health Plans, said some mistakes may have been made but emphasized that measuring patient access to physicians is difficult.

“Health plans are committed to providing timely access to health care and we believe that we provide that successfully,” Bacchi said. “Clearly this report demonstrates that we have work to do to improve our survey responses, and health plans are committed to working with the department to address it.”

Under California law, patients must get urgent care appointments within 48 to 96 hours. Primary-care visits must be scheduled within 10 business days and appointments with a specialist must come within 15 business days.

Yet many consumers continue to struggle to find in-network doctors to meet their needs.

David Discher of Redwood City, Calif., said he tried most of last year to find doctors who would take his Anthem Blue Cross insurance. The 39-year-old suffers from psoriatic arthritis and requires regular infusion treatments.

The Anthem directory for consumers listed three rheumatologists in his area. One doctor’s phone was disconnected and the other two were no longer accepting his Anthem plan, Discher said. His joint pain and swelling worsened while he waited nearly two months to see a specialist.

“It boggles my mind that insurers can’t keep their list up to date,” Discher said. “There is no excuse for how messy it is. Health insurers are engaged in false advertising.”

Consumer outrage over provider directories led to passage of a state law last year that requires insurers and medical providers to ensure the lists are accurate and regularly updated. It also requires health plans to reimburse consumers who are charged out-of-network prices because of an inaccurate provider list.

This latest review by regulators stemmed from a 2014 law sponsored by state Sen. Ed Hernandez (D-West Covina) that required insurers file reports to the state to combat problems with provider lists and barriers to care. He and consumer advocates urged regulators to step up enforcement against insurers that are violating the law.

“Their inability to accurately document which providers are in their networks raises serious questions about the reliability of these networks,” said Hernandez, chairman of the Senate Health Committee.

The state report analyzed data for 2015, and it applied to people in employer plans, individual policies and Medicaid.

Only four health plans submitted information without substantial errors. Two were full-service health plans, Community Health Group and Inland Empire Health Plan. The two others specialize in behavioral health: Human Affairs International of California and Managed Health Network.

The next round of reports from insurers on patient access and provider lists are due next month.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Categories: California, California Healthline, Insurance, Syndicate

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