Tagged Mental Health

Research Roundup: Hospital Transportation; Medicaid Expansion; Obesity Treatment

Each week, KHN compiles a selection of recently released health policy studies and briefs.

Urban Institute: The Affordable Care Act Medicaid Expansions And Personal Finance 
Results demonstrate financial improvements in states that expanded their Medicaid programs as measured by improved credit scores, reduced balances past due as a percent of total debt, reduced probability of a medical collection balance of $1,000 or more, reduced probability of having one or more recent medical bills go to collections, reduction in the probability of experiencing a new derogatory balance of any type, reduced probability of incurring a new derogatory balance equal to $1,000 or more, and a reduction in the probability of a new bankruptcy filing. (Caswell and Waidmann, 9/17)

Health Affairs: Networks In ACA Marketplaces Are Narrower For Mental Health Care Than For Primary Care
Using data for 2016 from 531 unique provider networks in the Affordable Care Act Marketplaces, we evaluated how network size and the percentage of providers who participate in any network differ between mental health care providers and a control group of primary care providers. Compared to primary care networks, participation in mental health networks was low, with only 42.7 percent of psychiatrists and 19.3 percent of nonphysician mental health care providers participating in any network. (Zhu, Zhang and Polsky, 9/1)

Pediatrics: Cost-Effectiveness Of Family-Based Obesity Treatment 
We translated family-based behavioral treatment (FBT) to treat children with overweight and obesity and their parents in the patient-centered medical home. … For families consisting of children and parents with overweight, FBT presents a more cost-effective alternative than an IC group. (Quattrin, Cao, Paluch et. al., 9/1)

This is part of the KHN Morning Briefing, a summary of health policy coverage from major news organizations. Sign up for an email subscription.

Narrow Networks Get Even Tighter When Shopping For Mental Health Specialists

If you’ve got a plan offered on the federal health law’s insurance marketplace and you’re looking for a therapist, you may have to look really hard: The average provider network includes only 11 percent of all the mental health care providers in a given market, according to a recent study.

An average marketplace plan’s network, the study added, includes just under a quarter of all psychiatrists  and 10 percent of all non-physician mental health care providers. Non-physician mental health care providers included psychologists, nurse practitioners and physician assistants, and  behavioral specialists, counselors and therapists with master’s or doctoral degrees.

Michelle AndrewsInsuring Your Health

In addition, the researchers reported that fewer than half of all psychiatrists and a fifth of non-physician providers participated in any marketplace plan.

The problem isn’t unique to marketplace plans, said study co-author Daniel Polsky, executive director of the Leonard Davis Institute of Health Economics at the University of Pennsylvania. However, this study, which was published in the September issue of Health Affairs, sheds more light on the challenges insurers face in trying to develop networks of mental health care providers, he said.

At the same time, the narrow networks — those that generally have fewer than 25 percent of participating doctors and other health providers in the area — that many insurers have adopted to help keep marketplace plan premiums lower may exacerbate the problem of finding mental health services, Polsky said.

High demand for services, a shortage of practitioners and low insurance reimbursement rates have all contributed to mental health care providers’ general lack of enthusiasm for joining provider networks, according to the study.

For comparison, the study also analyzed the average network participation of primary care providers in marketplace plans. It found that the average network for ACA plans included 24 percent of all primary care providers in a given market, more than twice the proportion of mental health care providers.

The study examined 2016 data for 531 provider networks offered by 281 insurance carriers in the marketplaces in every state plus the District of Columbia using data from the Robert Wood Johnson Foundation.

The Mental Health Parity and Addiction Equity Act of 2008 requires that health plans’ mental health services be at least as generous as medical/surgical services. That has provided financial protection for consumers, but access to in-network providers remains a problem.

In recent years, primary care physicians have increasingly provided mental health services. The study suggests that enhancing the collaboration between primary care physicians and mental health specialists is vital to improving access to mental health care.

“I would argue that the challenge isn’t necessarily a lack of primary care physicians, it’s a need to reorganize care to meet the needs of the population,” Polsky said. “Team-based care is an opportunity to meet those needs.”

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Categories: Insurance, Insuring Your Health, Mental Health

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Viewpoints: Returning To Work After A Psychotic Break; The Fiscal Responsibility Of Legalizing Weed

A selection of opinions on health care from around the country.

The New York Times: The ‘Madman’ Is Back In The Building
For my first day back to work I dressed in a sober navy sweater and a pair of dark slacks. Normal haircut, neatly trimmed beard. I got there early to avoid the morning rush and the inevitable stares and whispers. I had been “away with some issues” — that was the official company line, but offices are gossip hotbeds, and I wondered how much of the real story had filtered through. Did they know that I’d marched through the city for 12 hours — manic, psychotic and convinced I was being videotaped by secret TV producers, the star of my own reality show? That the police had found me later that evening shirtless, barefoot and crying on a subway platform? That I’d been involuntarily committed to Bellevue, the notorious psych ward to which we at Legal Aid routinely sent our most mentally ill clients? (Zack McDermott, 9/20)

Bloomberg: Marijuana Sales Can Make U.S. Tribes Richer And Poorer
“This is going to be bigger than bingo,” James Billie told CNN over the summer. A former chief of the Seminole, whose company MCW gives financing and legal counsel to American Indian tribes to help them grow and sell marijuana on their land, Billie could barely contain his excitement about this new venture. (Naomi Schaefer Riley, 9/19)

Louisville Courier-Journal: Repeat After Me: Yes. We. Cannabis.
Let me be blunt: I used to smoke weed. I have notebooks filled with very profound and original observations about the interconnectedness of all beings to prove it. But, I haven’t burned one down for more than a decade. So, when I suggest that Kentucky legalize recreational marijuana, it’s not because I have a toke in this fight. Instead, Kentucky lawmakers should stop puffing and start passing legislation to legalize weed for two reasons: It’s the right thing to do, and it’s the fiscally responsible thing to do. (Ben Carter, 9/19)

This is part of the KHN Morning Briefing, a summary of health policy coverage from major news organizations. Sign up for an email subscription.

Viewpoints: Nursing Home ‘Horror’; Time To Talk About Mental Illness, Not Blame The Victim

A selection of opinions on health care from around the country.

The Washington Post: The Inexplicable Horror Of The Deaths Of Eight Elderly People In Florida
“Unfathomable.” “Inexcusable.” Those were the words used respectively by Florida Gov. Rick Scott (R) and Sen. Bill Nelson (D-Fla.) to describe the deaths of eight elderly people found in a sweltering nursing home in the aftermath of Hurricane Irma last week. Those descriptions, while accurate, nonetheless fail to capture the full, inexplicable horror of the deaths. That people who were so vulnerable and needed special care were instead treated as an afterthought is insupportable. (9/17)

The Charlotte Observer: We Need To Talk About Mental Health
As we reflect on lessons learned one year after Keith Lamont Scott’s death and the subsequent community uprising, it’s time to start asking how we can provide more help to treat mental illness – which may be an underlying factor in crime, violence and misunderstanding. Research has shown that up to one half of people killed by law enforcement officers suffered from a disability, typically those with a mental illness or, in the case of Keith Lamont Scott, a traumatic brain injury. Yet stories in the public narrative often ignore the disability component or blame the victim. (John Cleghorn, Ophelia Garmon-Brown and Brandon Risher, 9/15)

San Jose Mercury News: Homelessness, Health Care Crises Overlap At VMC
Housing provides immediate stability and independence, and this stabilizing force can lead to vastly improved health outcomes. Traditionally, housing programs for the homeless – particularly those run by the government – have required that patients “get clean” before they can earn housing. But that view has been changing. (Nuriel Moghavem, 9/15)

Los Angeles Times: Refusing To Build Public Toilets Doesn’t Make Homeless People Go Away. It Creates A Public Health Crisis
Faced with an appalling shortage of public toilets in the Skid Row area, Los Angeles city officials promised in July to put up 10 more toilets by mid-September. Time’s up, but the toilets are not — at least not yet. City officials say they will unveil within a month a mobile “hygiene center” in the midst of Skid Row on a city-owned parking lot, offering toilets, hand-washing stations, showers, and half a dozen stacked washers and dryers for laundry. There will be security personnel as well as formerly homeless people working at the site, along with outreach workers who can steer people to housing and services. So, if downtown homeless people can hold it for a month, they’ll get 10 toilets and more. (9/16)

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Trump’s Deadline On ‘Dreamers’ Reverberates Through Health Industries

Karla Ornelas said she has “always had the idea of being a doctor, I’ve never seen myself doing anything else.” The third-year pre-medical student at the University of California-Davis said she plans to become a family medicine physician and work in California’s Central Valley, where there is a great need for doctors and especially bilingual doctors.

But that dream could be uprooted if the Trump administration goes forward with its plan to end the Deferred Action for Childhood Arrivals (DACA) program, which allows young people brought to the U.S. by their parents without proper documentation to stay and work here. Ornelas, 20, was born in Mexico and came arrived to the U.S. at age 9.

Across the country, Jennifer Rodriguez, 28, faces the same problem. Rodriguez, who works at a psychiatric care facility in Elkhart, Ind., as an administrative assistant, arrived in Goshen, Ind., from Mexico when she was 3, with no recollection of her birthplace and no documents to prove she belonged in the nation she  calls home. Now she is worried that she will be able to stay.

“It’s hurtful that I consider this my home, yet to other people I am an illegal,” she said.

In 2012, President Barack Obama established the DACA policy that gave a group of about 800,000 children and young adults freedom from concerns about being deported and the opportunity to earn a living.

On Sept. 5, Attorney General Jeff Sessions announced that President Donald Trump would cancel Obama’s executive order that set up DACA. Explaining the decision, the administration said that it did not believe Obama had the authority to set up the program and that it anticipated lawsuits from states seeking to end the program.

The administration is providing a six-month grace period until these protections end, giving Congress time to pass legislation to address the legal status of these immigrants, known as “Dreamers.”  Trump and Democratic lawmakers have agreed to work on a plan to extend the DACA program, but there are few details and conservatives have raised concerns.

There are no firm statistics showing how many Dreamers work in the health care sector, but industry leaders suggested that DACA’s end could have an impact, especially among medical students and home health aides.

Multiple health care groups denounced the administration’s move. A statement released by the Association of American Medical Colleges (AAMC) said its members are “extremely dismayed” by the decision.

“Even with the ‘wind down process’ described by the administration, the implications of this action for medical students, medical residents, and researchers with DACA status are serious, and will interfere with their ability to complete their training and contribute meaningfully to the health of the nation,” the group wrote.

The American Medical Association (AMA) said the administration’s announcement “could have severe consequences for many in the health care workforce, impacting patients and our nation’s health care system.” It urged Congress to pass a permanent solution.

“The more the administration threatens immigrants and their families and their communities,” said Robert Espinoza, vice president of policy at PHI, a long-term care advocacy group, “the more we threaten that workforce supply.”

One segment of the health care workforce that could be affected are medical students.

Students and residents may have to cut their training short, the AAMC said, and researchers may have to leave the country before completing their experiments. Foreign-born and international medical graduates also tend to work in underserved areas, said Matthew Shick, director of government relations and regulatory affairs at AAMC. Phasing out DACA could also sever a lifeline connection between doctors and populations in sore need of health care.

Karla Ornelas is a third-year pre-medical student at the University of California-Davis who registered for the DACA program. Her goal is to become a family medicine physician and return to the Central Valley. (Ana B. Ibarra/KHN)

Ornelas, whose family settled in Turlock, Calif., feels that need. For example, she said she accompanied her mother to a doctor’s appointment, as she usually does to help translate. Her mother, she said, had questions about lab results, and as her mother asked in Spanish and Ornelas repeated in English, the doctor grew impatient, told them to stop asking questions and walked out of the room.

“My mom wanted to cry, and I was shocked,” Ornelas said. “That’s when I realized that it wasn’t just my mom, it was an entire community that was relying on this doctor for health care.”

Sixty-five Dreamers were enrolled in medical schools across the nation during the last academic year, Shick said.

“It sounds like a small number,” he said, “but they’re treating anywhere between 1,000 and 2,000 patients in their clinical panel.”

Those medical students are needed to serve neglected communities as well as to alleviate the shortage of doctors. The AAMC projects a shortage of between 40,800 and 104,900 physicians by 2030. More than 43,000 of the empty slots are for primary care physicians.

Kurt Mosley, vice president of strategic alliances for Merritt Hawkins, a physician recruitment company, said he is unsure if there are any Dreamers practicing medicine given that group’s age (recipients were required to be younger than 31 at the time of the executive order).

DACA’s end could also have a large impact on the country’s ability to care for patients in a culturally sensitive manner, he said. And statistics point to the need — minorities are expected to constitute the majority of the U.S. population by 2044, according to the U.S. Census Bureau. By 2060, Hispanics — who make up the bulk of Dreamers — are expected to account for nearly29 percent of the U.S. population.

“You know we’re a nation of diversity, and our workforce should reflect that,” Mosley said. “And [dissolving DACA] is a step backwards.” Health care already relies on immigrants to fill the ranks. Over a fifth of Dreamers work in the health care or education industries, according to a 2016 survey by groups including the National Immigration Law Center and the Center for American Progress. Moreover, based on a separate 2015 survey by the immigrant advocacy organization United We Dream, nearly 23 percent want to pursue a career in health care.

Another sector of the workforce that heavily relies on foreign-born employees is direct care, which includes nurse aides, home health aides and personal care assistants. According to Espinoza, one-quarter of all employees are immigrants.

As the population ages, those jobs will continue to be in high demand. It’s hard to tell whether the vacancies that may be created by immigrants forced out of their jobs could be filled by the remaining population, he said.

“What our sector needs most is care,” Espinoza said. “And these kinds of federal decisions impede that — it impedes our ability to provide care.”

Rodriguez said she sees that need at her job often. The Latino clients frequently approach her for help, she said, recognizing a friendly face and asking in bits of broken English whether their native Spanish is familiar to her.

Interpreting for clients doesn’t fall under her job description, and her boss sometimes tells her to say no when she’s overwhelmed.

“But I would never do that to my people,” Rodriguez said. She wants to stay in the country and continue her work and life here.

Without DACA, Rodriguez said, she would have trouble caring for her family. She has two daughters and just purchased a home.

She is married to an American citizen, so she has petitioned for residency. However, the application is still being processed, she said, which means she relies on DACA to stay employed and keep her driver’s license. Many of her family members also depend on the program for legal protection, and she said she is worried what will happen to them.

Rodriguez identifies herself as a Mexican-American who considers Indiana home.

“This is all we know, and we just want to be productive citizens,” she said. “That’s all.”

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

Categories: Health Industry, Mental Health

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Viewpoints: The Public Health Implications Of Undoing DACA; The Problems With Ohio’s Drug-Pricing Ballot Question

A selection of opinions on health care from around the country.

The New England Journal Of Medicine: Dreams Deferred — The Public Health Consequences Of Rescinding DACA
After months of conflicting statements, President Donald Trump has announced that the Deferred Action for Childhood Arrivals (DACA) program, a landmark immigration program introduced during the Obama administration, will be rescinded as of March 2018. … Like many other elements of the administration’s immigration platform, the termination of DACA also appeared to be driven by a belief that rescinding economic benefits granted to undocumented immigrants would enhance economic opportunities for native-born people. … The recent policy debates about DACA have centered on the program’s economic consequences, while its substantial public health benefits have been less discussed. … The evidence clearly indicates that rescinding DACA will have profound adverse population-level effects on mental health. (Atheendar S. Venkataramani and Alexander C. Tsai, 9/13)

The New England Journal Of Medicine: Tragedy, Perseverance, And Chance — The Story Of CAR-T Therapy
In 2010, 5-year-old Emily Whitehead was diagnosed with acute lymphoblastic leukemia (ALL). Though her parents were told that if you had to have a kid with cancer, ALL was the best one to have, Emily’s course was hardly typical. After two rounds of chemotherapy, necrotizing fasciitis developed in both legs and she barely avoided amputation. Sixteen months later, she had a relapse. Bone marrow transplantation was recommended, but the Whiteheads, concerned about toxic effects, sought a second opinion at Children’s Hospital of Pennsylvania. There they learned about a new therapy, developed by University of Pennsylvania investigators and known as CART-19, which involved genetically engineering the patient’s own T cells to kill tumor cells. (Lisa Rosenbaum, 9/13)

The Des Moines Register: What’s Happening To Rural Mental Health Center Is Sickening
This is madness. A Centerville mental health center has won national attention for saving taxpayer money and helping clients stay out of jail and the hospital, but it may be forced to close next month, as Register writer Tony Leys reported Sunday. Why? Because, in part, state administrators have yet to write rules allowing Medicaid to reimburse the Oak Place center — and the 10 other “crisis-stabilization” centers set up around Iowa. (9/14)

Lexington Herald Leader: Bevin’s Quest To Outlaw Abortion In Kentucky Is Unconstitutional And Underhanded
In case there were any lingering doubts, a trial in federal court in Louisville last week made this much clear: Gov. Matt Bevin is seeking to effectively outlaw abortion in Kentucky — something the U.S. Supreme Court has long ruled states cannot do. The three days of testimony also made clear that Bevin’s administration has used underhanded tactics to accomplish its unconstitutional goal. (9/14)

Chicago Tribune: Four Weeks To Kill The Soda Tax
With both sides steadfast yet lacking the votes to prevail, Cook County Board members on Wednesday kicked to next month a decision on whether to repeal the unpopular soda tax. The board is expected to take action at its Oct. 11 meeting. In other words, soda tax opponents: You’ve got four weeks to keep up the pressure. Don’t let up. Kill this arbitrary, unnecessary, expensive tax. (9/13)

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Viewpoints: Cancer Drug Revolution; When The Cause Of Death Is ‘Inequality’

A selection of opinions on health care from around the country.

The Columbus Dispatch: New Cancer Drug Revolutionary?
The Food and Drug Administration approved a new treatment last month for acute lymphoblastic leukemia, an aggressive disorder of the blood and bone marrow that is the most common childhood cancer in the United States. On its face, this may not seem like big news. The government is approving it for use only on young people, only 3,100 of whom are diagnosed with the disease every year. So a relatively small number of Americans stands to benefit. (9/14)

Los Angeles Times: Prostate Cancer: Patience And Prevention
For more than a decade, we’ve known that prostate cancer is over-diagnosed and over-treated, putting men at risk of incontinence and sexual dysfunction to remove what might have been a slow-growing, non-lethal cancer. When active surveillance of prostate cancer was first proposed over a decade ago, men weren’t racing to be the first to try it. Active surveillance is the careful monitoring of cancer for signs of progression. Unlike lung, breast and colon cancer, there are indolent forms of prostate cancer that do not require surgery or radiation. (Jeffrey Yoshida, 9/13)

Chicago Tribune: I Watched My Patients Die Of Poverty For 40 Years. It’s Time For Single-Payer Health Care.
Sarai was 25 when she died of Wilson’s disease, an inherited disorder that causes liver failure. A liver transplant could have cured her, but she was uninsured and was denied an appointment at two prominent Chicago transplant hospitals, including my own. Sarai’s plight was brought to my attention when a local religious group held a hunger strike advocating transplant access for Sarai and other uninsured patients. When she died, her congregation marched seven miles, holding her photograph and lugging coffins emblazoned with her name, to launch a sit-in in front of Northwestern University Hospital. Her death certificate named liver disease as her cause of death, but that’s not true. The real cause was inequality. If the United States had a Medicare-for-all health insurance system, she might have been saved. (David A. Ansell, 9/13)

JAMA Forum: Long-Term Care: Investing In Models That Work
President Trump and the US Congress have promised to reduce federal spending, through tactics that include cutting Medicaid and Medicare. What they fail to take into account is that sometimes investing in programs that work well can reduce spending while improving the health and well-being of people. A case in point: programs that help older adults and those who are disabled remain in their homes and out of long-term care facilities. (Diana Mason, 9/13)

The Des Moines Register: In A Medical Emergency, WHERE You Live May Determine IF You Live
Did you know the majority of urban ambulance services are paid, while rural ambulance services are mostly volunteers? Sixty-seven percent of all ambulance services in Iowa are staffed by volunteers who receive no compensation. The majority of our higher level care hospitals are in urban areas served by paid ambulance services, most of which are at a paramedic level. In contrast, Iowa’s rural areas have community hospitals, accounting for 79 percent of the hospitals in our state. These hospitals can only stabilize and transfer critical patients to higher level care hospitals, typically located a significant distance away. Nine counties in Iowa have no hospital. (Sandy Heick, 9/12)

JAMA: What Should I Do When I Hear The Call For Medical Assistance In A Plane?
If there is a doctor on board, would you please make yourself known to a member of the cabin crew?” Reflexively, my hand shoots up to press the button. Seven times I have responded to such requests. Mostly it has worked out well. Twice I thought the passenger had had too much alcohol. Once I comforted an anxious woman. Another time a young army recruit heading for basic training had unexplained arm pain. Sometimes it was more serious. A man with abdominal pain told me he had cancer and he needed my attention and reassurances. A woman had a cardiac emergency, and I had to request an unscheduled landing. Another emergency on a trans-Pacific flight required the extended care of several physicians. (Gregory L. Eastwood, 9/12)

Stat: It’s Time To Give Those With Severe Brain Injuries The Civil Rights They Deserve
Several colleagues and I had proposed a project to study the legal rights of people with severe brain injury. Their plight is terrible: They are often dispatched from the hospitals where their lives had been saved to nursing homes where they receive what is euphemistically called custodial care rather than skilled medical care. (Joseph J. Fins, 9/13)

RealClear Health: It’s Time To Tackle Suicide Rates Smartly
September is Suicide Prevention Month and well-meaning suicide advocates are out in force calling for a greater effort to reduce it. But can we reduce suicide? While researching, “Insane Consequences: How the Mental Health Industry Fails the Mentally Ill,” I learned that mortality from strokes, AIDS, heart disease, and leukemia have decreased dramatically since the 1960s, but in spite of all we’ve spent on suicide, suicide mortality has remained the same. (DJ Jaffe, 9/14)

The Wall Street Journal: The Campus Left Vs. The Mentally Ill
Conservative commentator Ben Shapiro is scheduled to speak Thursday at the University of California, Berkeley, and school officials are prepared. A campuswide announcement promised “support and counseling services for students, staff and faculty” who feel Mr. Shapiro’s presence threatens their “sense of safety and belonging.” (Clay Routledge, 9/13)

The Kansas City Star: Josh Svaty May Be Pro-Lifeish. Will Kansas Democrats Allow Such A Thing?
Democratic gubernatorial candidate Josh Svaty got the question of the night, and of the year, from a man in suspenders in the third row: “For a lot of Democrats, particularly Democratic women, choice is a threshold issue. Can you say why, as a pro-choice Democrat, I should get enthusiastic about you?” Svaty, a 37-year-old farmer, former EPA official and ag secretary who successfully ran for the Kansas statehouse out of his college dorm room, voted with his heavily Republican, rural district on the abortion issue. He began the answer that will matter most to his candidacy this way: “That was part of being responsive to constituents. (Melinda Henneberger, 9/13)

The New York Times: The Economic Case For Letting Teenagers Sleep A Little Later
Many high-school-agechildren across the United States now find themselves waking up much earlier than they’d prefer as they return to school. They set their alarms, and their parents force them out of bed in the morning, convinced that this is a necessary part of youth and good preparation for the rest of their lives. It’s not. It’s arbitrary, forced on them against their nature, and a poor economic decision as well. (Aaron E. Carroll, 9/13)

Stat: Study On Flu Shot-Miscarriage Link Shows Science Prioritizes Vaccine Safety
[T]here is a scientific reason to think that the new findings may be a true signal we need to take seriously. While multiple studies in the past have found that women who received flu vaccine during pregnancy did not have a higher rate of miscarriage than women not vaccinated, this is the first study to focus on three important variables: 1) vaccines that contained the 2009 H1N1 flu virus strain, the virus that caused the 2009 influenza pandemic; 2) the 28 days after vaccination; and 3) the impact of repeat flu vaccination over two flu seasons. (Michael T. Osterholm, 9/13)

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Viewpoints: At HHS, ‘Waste Scores A Victory’; Home Care Costs; Misreading The Opioid Crisis

A selection of opinions on health care from around the country.

The Washington Post: Tom Price Decides He Doesn’t Want Medicare To Save Money
The coming crisis is as predictable as it is worrying. Nearly a fifth of every dollar spent in this country is spent on health care. Without reform, that number will only rise as the baby boomers retire. Younger generations will suffer, as money is taken from building roads and educating children to paying for Medicare to cover boomers’ health costs. … Yet waste scored a victory when Health and Human Services Secretary Tom Price decided to stop or scale back “bundled payment” experiments the Obama administration had begun. (9/12)

The Wall Street Journal: Why Home Care Costs Too Much
As baby boomers age into long-term care facilities, Medicaid costs will go through the roof. Americans already spend—counting both public and private money—more than $310 billion a year on long-term support services, excluding medical care, for the elderly and the disabled. Medicaid accounts for about 50% of that, according to a 2015 report from the Kaiser Commission on Medicaid and the Uninsured. Other public programs cover an additional 20%. … There’s an urgent need to find ways of providing good long-term care at a lower cost. One fix would be to deregulate important aspects of home care. (Paul Osterman, 9/12)

The Wall Street Journal: The Way We Pay Doctors Is Hurting Health Care
For several decades, specialists in the U.S. have been paid considerably more than primary-care physicians. On average, orthopedic surgeons, cardiologists, radiologists and plastic surgeons make about twice as much as internists, pediatricians and family medicine doctors. True, most specialists train for a longer period of time than primary-care providers, but the degree of divergence in compensation has little to do with market forces or input costs. The difference has consistently been tied to how we pay for care with our emphasis on volume, procedures and technology, rather than prevention, care coordination, evaluation expertise and outcomes. (Howard Forman, 9/12)

Los Angeles Times: The Great Medi-Cal Paper Waste
Remember the telephone book? That giant, multi-thousand-page behemoth that used to land on your doorstep once a year? Well, neither do we, barely. The heyday of the phone book is long gone, and yet communications with friends and businesses is easier than it’s ever been before. Can it be that California officials haven’t noticed that? A new federal rule that took effect in July allows health insurance plans to stop automatically printing and mailing lengthy Medi-Cal provider directories, some of which are the size of phone books, to all new enrollees and make the information available digitally. Anyone without online access or who preferred having a hard copy could still request one. (9/12)

The Washington Post: Poor, Middle Class Saw Solid Gains Last Year, But We’ll Need Better Policy To Keep It Going
Poverty fell, middle-class incomes rose, and the share of Americans without health coverage ticked down to a historical low last year, according to data released Tuesday morning by the Census Bureau. This trifecta of gains for poor and middle-income households, as well as the uninsured, shows that the seven-year expansion, along with the Affordable Care Act, has continued to lift the living standards of many American households. However, last year’s gains were even stronger for those at the top of the income scale, suggesting that the inequality of economic outcomes continues to grow in America. (Jared Bernstein, 9/12)

The Washington Post: The Media Gets The Opioid Crisis Wrong. Here Is The Truth.
Lawmakers and the media have devoted much of their attention recently to deaths from opioid overdoses, as well as to the broader “deaths of despair” that include suicides and deaths from alcoholic liver disease and cirrhosis. But despite the intense focus on the topic, misinformation about the epidemic runs rampant. By conventional wisdom, tackling this crisis would require extending Medicaid and improving how it functions, cracking down on prescription painkillers and getting more health-care resources into rural communities. (Anne Case and Angus Deaton, 9/12)

San Antonio Press-Express: ‘Bad Paper’ Denying Vets Needed Services
Like [Mike] Gerardo, thousands are discharged from the military though the behaviors that got them this attention are service connected. Suffering from PTSD, for instance, often means self-medicating with drugs and alcohol. These service members are deemed problems and are discharged without being provided the services other “wounded” vets are accorded. (9/12)

WBUR: How To Talk To Your College-Age Kids About Depression And Suicide
School’s back in session, and parents ushering kids to college for the first time will undoubtedly deliver some emotional nuggets of advice. But they should also have a potentially life-saving talk with their kids in the first semester of college to avert a possible tragedy — suicide. (Nancy Rappaport, 9/13)

The New York Times: The Nazis’ First Victims Were The Disabled
I sit facing the young German neurologist, across a small table in a theater in Hamburg, Germany. I’m here giving one-on-one talks called “The Unenhanced: What Has Happened to Those Deemed ‘Unfit’,” about my research on Aktion T4, the Nazi “euthanasia” program to exterminate the disabled. “I’m afraid of what you’re going to tell me,” the neurologist says. (Kenny Fries, 9/13)

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Lawsuit Renews Concerns Over Link Between Antidepressants And Suicide In Adults

It is known that antidepressants increase the risk of suicide in young people, but new data revealed after a lawsuit may demonstrate dangers for older patients as well.

The New York Times: Lawsuit Over A Suicide Points To A Risk Of Antidepressants
The last dinner Wendy Dolin had with her husband, Stewart, he was so agitated that he was jiggling his leg under the table and could barely sit still. He had recently started a new antidepressant but still felt very anxious. “I don’t get it, Wen,” he said. The next day, Mr. Dolin, a 57-year-old Chicago lawyer, paced up and down a train platform for several minutes and then threw himself in front of an oncoming train. (Rabin, 9/11)

The New York Times: Suicide Data Incorrectly Reported In Drug Trials, Suit Claimed
For many years GlaxoSmithKline and its predecessor, SmithKline Beecham, marketed Paxil as an antidepressant that would reduce the risk of suicide in depressed patients. The results of the company’s clinical trials, presented to the Food and Drug Administration in 1989, suggested Paxil was far safer than a placebo. Back then, the company reported that among nearly 3,000 patients treated with Paxil in the worldwide clinical trials, five committed suicide — a rate of about one in 600. By contrast, there were two suicides in a much smaller group of 554 patients randomly assigned to take a placebo pill — a rate of about one in 275, more than double that of the Paxil group. (Rabin, 9/11)

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Treating Diseases With Electrical Pulses Is Compelling Concept, But Evidence That It Works Is Scant

That isn’t stopping companies from trying to strike while the iron’s hot, though. In other public health news: opioids in cough medicine, Sept. 11 first responders, obesity, the problems with a sedentary lifestyle, prostate cancer and more.

Stat: Can We Treat Disease With Electrical Pulses? Investors Are Intrigued
The much-hyped field of “electroceuticals” — which involves zapping nerves with tiny electrical pulses to treat disease — got another injection of funds late last month with a $30 million investment round for startup SetPoint Medical. Major medical device companies Medtronic and Boston Scientific kicked in funding, as did several venture funds. Global pharma giant GlaxoSmithKline has also invested in SetPoint. (Piller, 9/12)

Stat: FDA Panel: Risk Of Opioid Use In Kids’ Cough Medicines Outweighs Benefits
A federal advisory committee sent a strong message to the Food and Drug Administration on Monday, declaring nearly unanimously that the risks of using certain opioids in children’s cough medications outweighs the benefits. “We have a disease with a very low risk profile, yet we’re looking at a drug that has a risk of death,” said Dr. Christy Turer, an assistant professor of pediatrics, clinical sciences, and medicine at the University of Texas Southwestern. “That, to me, seems very disproportionate.” (Swetlitz, 9/11)

NPR: Sept. 11 First Responder Still Fights For Care For Others Who Were There
Following the attacks of Sept. 11, 2001, first responders rushed to ground zero in Manhattan, where they braved dangerous conditions to rescue people buried in the rubble, retrieve the remains of the dead and clear the debris. Among them was demolition supervisor John Feal. Feal arrived at ground zero on Sept. 12; just five days later, he was seriously injured when an 8,000-pound piece of steel fell and crushed his foot. (Gross, 9/11)

Stat: Otherwise Healthy Obese People Have Higher Rate Of Cardiovascular Disease
Is obesity always unhealthy? Some studies have tried to answer that question by looking at those who are “fat but fit” — obese but still physically active. A new study takes a different tack: If people are obese but without other cardiovascular risk factors, do they still have a higher rate of things like heart attack and stroke? The answer, in one of the biggest studies yet to weigh in on the question, is yes. Using an electronic health record database of 3.5 million people, researchers at the University of Birmingham in England separated people into categories based on their body mass index (BMI) and whether they had type 2 diabetes, hypertension, high cholesterol, or more than one of those illnesses. (Sheridan, 9/11)

WBUR: Why Men Are Less Likely To Return To A Female Doctor
Men are less likely to return to a new doctor if the doctor is female, according to a new report from athenahealth. Using data from over 2 million visits to primary care doctors, the study found that if the doctor was a woman, men with commercial health insurance would only schedule a return visit about 40 percent of the time. (Chakrabarti, Mitchell and Goldberg, 9/11)

Los Angeles Times: Get Up At Least Once Every 30 Minutes. Failure To Do So May Shorten Your Life, Study Finds
ou can spend a lot of accumulated time on your bottom in the course of a day. Or you can sit for lengthy spells without a break. Both, it turns out, are very bad for you. Whether you’re a heavy sitter or a binge-sitter, racking up prolonged sedentary time increases your risk of early death, according to a study published in Tuesday’s edition of the Annals of Internal Medicine. (Healy, 9/11)

Georgia Health News: Tests For Prostate Cancer Get Stronger Backing
A federal task force five years ago recommended against routine screening for prostate cancer. The U.S. Preventive Services Task Force said the PSA screening test often suggested that prostate cancer might be present when there was no cancer — a result known as a “false positive.” Such results cause worry and anxiety and can result in follow-up tests and procedures, such as biopsies, that aren’t needed, the task force said. This opposition to routine screening proved controversial, and earlier this year the organization relaxed its position. The new recommendation of the task force said men ages 55 to 69 should decide individually with their doctors whether and when to undergo PSA testing. (Miller, 9/11)

North Carolina Health News: Fighting Antibiotic Resistance, One Prescription At A Time 
Fewer North Carolinians are getting and filling antibiotic prescriptions over the past five years, and according to infectious disease experts, that’s a good thing. Data released last month by the national Blue Cross Blue Shield Association showed fewer North Carolina patients filled prescriptions for antibiotics than in any other Southeastern state. Researchers looked at claims submitted by people covered by Blue Cross Blue Shield in almost every state and saw how many people were getting prescriptions for antibiotics. In North Carolina, the number of claims had dropped from 87.4 prescriptions per hundred patients in 2010 to 66.8 prescriptions per hundred patients last year, the second fastest rate of decline in the U.S. (Hoban, 9/11)

The Philadelphia Inquirer/Philly.com: Citing Brain-Injury Risk, Doctors Say Orthopedic Surgeons Should Not Support Football
Orthopedic surgeons should dissociate themselves from football at all levels of the sport rather than enabling an activity that carries a risk of brain injury, according to an editorial by senior editors of a Philadelphia-based orthopedics journal. No team sponsorships, such as the marketing arrangement that the Rothman Institute and Thomas Jefferson University have with the Eagles. No standing on the sidelines. No performing sports physicals for high school and college players. (Avril, 9/11)

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Rural Mental Health Crisis Center Threatened By Glitch In Iowa’s Medicaid Payments

State officials say some of the services provided by the center in rural Appanoose County should qualify for Medicaid reimbursement, but they haven’t written rules to make such payments. The center, which opened three years ago, could close next month. Also in Maine, advocates hope that voters can push through a referendum to force the state to accept the health law’s Medicaid expansion.

Des Moines Register: Iowa Medicaid Not Set Up To Pay For Lauded Rural Mental Health Facility
An innovative program that provides mental-health help in a rural area desperate for such services is on the cusp of closure, partly because state officials haven’t arranged a way for it to bill Medicaid. Numerous southern Iowans who’ve used the Oak Place center are stepping forward to explain why they want it to stay open, pushing aside fears about being identified publicly as people who were hamstrung by depression or anxiety — and who sought help. (Leys, 9/8)

Modern Healthcare: Maine Residents Hope Ballot Box Will Do What Legislators Couldn’t: Expand Medicaid To More Low-Income Adults
A coalition of Democratic and moderate Republican state lawmakers passed bills five times that would have had Maine apply for federal Medicaid expansion money to cover low-income able-bodied adults without children at home. Gov. Paul LePage vetoed them each time. Both Florida and Montana had previously tried to expand Medicaid through a ballot initiative, and neither effort gathered enough signatures. By contrast, Maine collected the 67,000 signatures on a single day — election day, last year. (Lee, 9/8)

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Despite Serious Safety Issues, Hospital Watchdog Didn’t Change Its Rating Of Facility

An investigation by The Wall Street Journal finds that the Joint Commission, which is the accrediting organization for almost 80 percent of U.S. hospitals, typically takes no action to revoke or modify accreditation when state inspectors find serious safety violations. Meanwhile, an expert talks to Politico about hospitals and health care spending.

The Wall Street Journal: Hospital Watchdog Gives Seal Of Approval, Even After Problems Emerge
Patient-safety problems were so serious at Cooley Dickinson Hospital in Northampton, Mass., that the federal Medicare agency threatened to cut it off. Most patients never knew. Two babies died within six weeks in late 2013 and early 2014. That was just a couple of months after a pregnant woman died when the hospital didn’t ensure she was treated for high blood pressure from a condition called pre-eclampsia, according to a federal inspection report. (Armour, 9/8)

And in news from the states —

Boston Globe: Humane Treatment Comes At Last To Bridgewater State Hospital, Where Prisoners Have Become ‘Persons Served’
In April, a private firm hired by the Baker administration replaced almost all the guards at Bridgewater State Hospital with a specially trained security force, along with psychiatrists and other clinicians equipped to provide more humane methods of handling distressed patients. … Five months in, the results are remarkable, beyond the imagining of mental health advocates. (Rezendes, 9/8)

KCUR: KU Hospital Denies Patient’s Allegations Of Cancer Misdiagnosis And Cover-Up 
The University of Kansas Hospital is denying allegations by a patient that it wrongly diagnosed her with pancreatic cancer and then covered it up. In an answer filed this week, the hospital says that many of the allegations made by Wendy Ann Noon Berner “reference undisputable hearsay and speculation, and many would arguably constitute defamation” if they were not part of a lawsuit. (Margolies, 9/8)

Boston Globe: Former Medical Center Site Said To Have No Takers
Boston-area health care providers have not shown interest in locating their operations at the former Quincy Medical Center site, according to its owner, who had hoped to have a reuse plan for the property before the end of the year. FoxRock Properties, a Quincy commercial real estate firm that bought the former hospital in December 2016, has been marketing the property to health care providers, but they have told FoxRock that the complex is too old and outdated, company representative Chet Clem told more than 50 people at a recent neighborhood meeting. (Terreri Ramos, 9/8)

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Many Florida Hospitals Show ‘Tremendous Spirit’ In Face Of Hurricane And Remain Open

At least 35 hospitals in the states that are or have been affected by the storm had to be closed or partially evacuated though. Meanwhile, clinicians evaluate the theory that hurricanes induce labor, Georgia faces Irma, and mental health professionals prepare for the strain a natural disaster puts on children.

Stat: Irma Forces At Least 35 Hospitals To Evacuate Patients. Here’s A Rundown
At least 35 hospitals in Florida, Georgia, and South Carolina have either closed entirely or ordered partial evacuations in advance of Hurricane Irma. The decisions come as officials have ordered nearly 7 million people to leave their homes, causing a mass exodus north before the storm begins to lash the Florida coast. (Blau, 9/9)

Health News Florida: Public Health Emergency Declared For Florida
A public health emergency was declared for Florida on Thursday ahead of Hurricane Irma. Health and Human Services Secretary Tom Price made the declaration and took action that gives HHS’ Centers for Medicare & Medicaid Services’ (CMS) greater flexibility in meeting emergency health needs. (Ochoa, 9/8)

Stat: Can A Hurricane Induce Labor? Women In The Path Of Irma Are Worried
Many of Florida’s hospitals are built to withstand hurricane winds in order to protect patients. While most don’t act as emergency shelters, some make exceptions for expectant mothers facing high-risk pregnancies. They allow them to inflate mattress inside their walls, provided they bring their own sheets and snacks, in case they enter labor. The reason is rooted in the idea that low barometric pressure induces labor. The debate has fascinated local reporters for years: Back in 1992 the Sun Sentinel reported that at least 1,500 women were hospitalized during Hurricane Andrew. A handful of studies — including a 2007 retrospective study published in the Archives of Gynecology and Obstetrics — further suggests there’s a connection between low barometric pressure and the likelihood that fetal membranes will rupture. (Blau, 9/8)

The New York Times: Life After The Storm: Children Who Survived Katrina Offer Lessons
The children upended by Hurricane Katrina have no psychological playbook for the youngsters displaced by Harvey, or those in the path of Irma, the hurricane spinning toward Florida. In the aftermath of Harvey, more than 160 public school districts and 30 charter schools have closed in the sprawling Houston metropolitan area. Families have scrambled to higher ground, some to other cities like Dallas or San Antonio, others into shelters. Thousands of children will have to adjust on the fly, bussed for hours to new schools from makeshift housing. Texas officials are scrambling to coordinate mental health support; the state’s psychology board is issuing temporary licenses for out-of-state therapists. (Carey, 9/8)

Texas Tribune: Harvey Deals A Blow To Texas’ Already Struggling Child Welfare System
Texas’ child welfare system was already in crisis before Hurricane Harvey. Now, perhaps hundreds of foster families in Houston and along the Gulf Coast have been displaced by the storm and hundreds of child welfare workers have been unable to return to work, said the state official who oversees Child Protective Services on Friday. (Evans, 9/8)

Elsewhere —

NPR: Smoke From Western Wildfires Can Make It Hard To Breathe
It’s an unusually bad wild fire season in the West, and for weeks people across the region have been breathing air thick with smoke. “There’s smoke from Canada, smoke from Idaho, smoke from California and Montana. There’s smoke everywhere,” says Greg Svelund, a spokesman for Oregon’s Department of Environmental Quality. (Greenhalgh, 9/11)

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Quiz: How Well Are You Paying Attention?

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

Categories: Aging, Health Industry, Insurance, Medicaid, Medicare, Mental Health, Multimedia, Public Health, The Health Law

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A Rare Dementia Gene Runs In The Family, But He’s Fine — So Far

MARBLEMOUNT, Wash. — John Janda knows he takes after his mother.

At 68, the graying building contractor is sentimental, just as she was. He smiles indulgently as he shows off photos of his 9-month-old grandson; he tears up at the memory of losing his dad in a construction accident more than 40 years ago.

“I’m emotional,” he said, eyes glistening. “I know I got that from her. They call that ‘a kind heart.’ That’s one of the best blessings there ever was.”

Along with the blessings, however, Janda inherited what many would call a curse: a genetic mutation that causes a devastating brain disorder known as frontotemporal dementia, or FTD.

His mother, Lucille Janda, had the mutation and the disease, a relentless illness that ravaged her personality starting in her late 40s and eventually robbed her of the ability to think, speak and walk.

John Janda has the same mutation, doctors say. But unlike his mother, who died in 2014 at age 93, Janda has shown no sign of the disorder, more than 15 years after symptoms typically appear.

“I can’t tell you that I feel anything,” said Janda, a lifelong builder who operates a woodshop, metal shop, sawmill and lumber kiln on his remote property about 100 miles northeast of Seattle. “I could go on my job and do anything I did 25 years ago. The knowledge is still there. I’m still gaining information all the time.”

That makes him a medical mystery, a puzzle to scientists who can’t say why Janda has so far been spared his mother’s fate.

“The overwhelming majority of the people who have this mutation develop the disease, but there are a few who don’t,” Dr. Thomas Bird, a University of Washington professor of neurology and medical genetics. “We would love to know why. What a terrific clue that would be to treatment of the disease.”

Bird was part of the team who first identified the mutation in the MAPT gene, one of three now linked to FTD. He has been studying the Jandas and other affected families for more than 35 years. Last year, he published a paper in the American Journal of Medical Genetics detailing the family’s experience.

“John’s an outlier. He’s going to be 69 years old this summer and he’s doing great,” Bird said.

FTD, also known as frontotemporal degeneration, is a progressive, irreversible disorder that accounts for between 10 and 20 percent of all dementia cases. An estimated 55,000 people in the U.S. are affected by the disease, though experts say it’s vastly underdiagnosed. High-profile sufferers include former congressman Maurice Hinchey, 78, whose family recently announced his diagnosis.

It strikes people earlier than other types of dementia, usually in their 50s or 60s, and begins with gradual declines in behavior, judgment and language that eventually lead to profound disability. There is no treatment and no cure.

In the beginning, people with FTD lose social skills. They might tell a neighbor her dress is ugly or get into arguments with people at work. As the disease progresses, the behaviors escalate. Bird recalls one FTD patient who would crawl on the floor of a department store, collecting spare change. Others develop obsessive or repetitive behaviors or become physically or sexually aggressive.

“We’re talking about a disease that steals the essence of who you are as a human being,” said Susan Dickinson, executive director for the Association for Frontotemporal Degeneration. “It’s hard to comprehend exactly what this disease steals from people.”

Janda, at home in Marblemount, Wash., is a medical mystery. Researchers are studying his case to potentially unlock secrets of how and when frontotemporal dementia, or FTD, emerges. (Michael Hanson for KHN)

When Janda was growing up, no one knew what to call the condition that has so far affected 18 people in four generations of the family, from Washington to Wisconsin.

“Uncle Ernie went bad, Aunt Verna went bad,” recalled Janda, who is one of eight siblings. “There was four or five who went bad.”

In Janda’s mother’s case, family members began noticing that she was acting strangely starting in her mid-40s.

“Mom would make comments or go off on a tangent that wasn’t part of the conversation,” Janda recalled. “My dad could notice it, but no one talked too much about it.”

Then his father, James Janda, died suddenly at age 56 in a 1976 construction accident, devastating his adult children — and exacerbating his wife’s illness.

She became distant and withdrawn, more temperamental and easily confused.

We’re talking about a disease that steals the essence of who you are as a human being.

Susan Dickinson, Association for Frontotemporal Degeneration

“She couldn’t focus on an issue, but she could remember little things, old songs, things like that,” said Janda, who used to sing “Hello, Dolly!” to his mom to make her smile. “She could remember some people. It got worse as she got older. She could remember me way, way into it.”

By her late 50s, Lucille Janda could no longer cook or drive. She went to live with another son, Tony Janda, and his wife, Candace. The couple cared for her at home for the next three decades.

“It’s a lot of work, but you won’t ever forget it,” said Tony Janda, 59.

Lucille Janda’s sister was referred to Bird in the late 1980s by a Seattle neurologist. The scientist later located three far-flung cousins with the disease, all men, who were in the same chronic care veterans hospital in Wisconsin.

“I saw them, I examined them, I was able to get blood samples,” Bird said. “I made arrangements to have brain autopsies done when they died.”

With the family’s permission, he has examined the brains of six members of the Janda family, including Lucille Janda. Before her death, Bird and a colleague visited her at home — but just once.

“She didn’t want to see us. She actually, suddenly, jumped up, opened the kitchen door and ran away,” he said. “That was the end of the visit.”

When Bird and his colleagues examined the autopsied brains, they expected to find evidence of Alzheimer’s disease, specifically the plaques and tangles that define the disorder. Plaques are clusters of beta-amyloid proteins that build up among nerve cells. Tangles are twisted fibers of the protein tau, which is vital for nerve cell function in the brain.

“But when my colleague looked under the microscope, he saw tangles, but no plaques,” Bird said. That meant this was a novel type of dementia, similar to Alzheimer’s but different in key ways.

In 1998, Bird was part of the team that discovered the first genetic link to FTD, a mutation in a gene that governs tau.

“When it is abnormal, it is not moving things properly in the cell,” Bird explained. “Proteins back up, they don’t get to where they’re supposed to go. It makes the cell sick, then it gets very sick, then it stops functioning and then it dies.”

Hundreds, then thousands, then millions of nerve cells disintegrate, causing parts of the brain to shrink. The disease targets the brain’s frontal and temporal lobes, causing the debilitating symptoms. Exams showed Lucille Janda’s brain weighed 1.8 pounds; a typical human brain weighs 3 pounds.

During her life, members of the Janda family were aware of the researchers’ interest in FTD, but they didn’t put much stock in the science behind the disease.

Tony Janda said he worried more that his mother’s condition could have been caused by environmental factors, like using aluminum cookware. (Such a link has not been confirmed, researchers say.)

He and his wife focused on providing natural foods like stone-ground grains and pureed fresh fruits and vegetables.

“We did the juice drinks, which were energetic to her brain,” he said.

Then, in 2004, John Janda had a mild heart attack followed by bouts of debilitating anxiety, pain and sensitivity to noise. He and his wife of 45 years, Mary Janda, a retired middle school teacher, worried that it was the first sign he’d developed his mother’s disease.

“I had already prepared myself for the situation that might happen,” Janda recalled. “I thought to myself, ‘Maybe I’ll get it, too.’”

After Janda had a mild heart attack in 2004, he and his wife, Mary, worried his symptoms of anxiety, pain and light sensitivity were the first sign he had developed his mother’s devastating brain disorder, which has affected 18 people in four generations of his family, from Washington to Wisconsin. (Michael Hanson for KHN)

After much discussion, the couple reached out to Bird eight years ago and asked him to test Janda for the mutated gene.

“Because my trust is solely and wholly in God, I thought we ought to know,” said Mary Janda, 69.

The test came back positive.

“I wasn’t freaked out,” John Janda recalled. “I thought, so, OK, he’s telling me that I have the gene. If it’s in my blood, that’s fine. I don’t care. All I know is I’m not being affected by it.”

In the years since he got the news, Janda’s anxiety has subsided. He credits hard work, a healthful diet and vitamin supplements with his continued vigor. Bird and other scientists say those habits may help, but they’re not the whole reason Janda has kept the disease at bay.

“Our guess is he also inherited protective genes,” Bird said. “There’s a lot more to learn about that.”

The overwhelming majority of the people who have this mutation develop the disease, but there are a few who don’t.

Dr. Thomas Bird, University of Washington

Researchers who study FTD are focusing on potential protective factors in hopes of finding a treatment.

None of Janda’s seven siblings has developed FTD — but like many families with a history of the genetic disorder, they haven’t agreed to undergo testing, either. Most simply don’t want to know.

“I have felt zero need to be tested by doctors,” said Tony Janda. “But I have been very persistent at paying attention to the natural remedies that people talk about as being helpful to our brain.”

Ideally, Bird would like to be able to examine all members of the Janda family, including the Jandas’ five grown children and their children. But he understands why some may be reluctant.

“We wouldn’t want to put any pressure whatsoever for getting the genetic testing done,” he said. “There are perfectly good reasons not to have genetic testing.”

The Janda family members — and anyone else with a potential genetic link to the disease — could further research by donating samples and asking scientists not to reveal the results, Bird said.

With seven siblings, it’s possible that more may be like John Janda and have the mutated gene but no symptoms. It’s also possible he’s the only one.

“It is kind of an unnerving thing and kind of hard to deal with,” he said.

But he doesn’t dwell on the possibility of developing a disease he can do nothing about. Instead he focuses on work, family — and faith.

“It kind of lifts a huge burden off you,” Janda said. “You really can’t control it. As we would always say, you give it to God. It’s part of why we can have a peaceful existence.”

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

Categories: Aging, Mental Health

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