Tagged Trump Administration

Must-Reads Of The Week From Brianna Labuskes

Happy Friday! We have officially made it through the dog days of summer. (Fun fact: Apparently those are set dates and not just … a vague concept of “sometime in August when it’s hot.” I was today-years-old when I learned that.) But that doesn’t mean we’ve had even close to a dearth of health care news. So buckle up, here’s what you may have missed this week.

Planned Parenthood officially rejected Title X funding rather than comply with what it deemed a “gag rule” on its providers. The price tag on that decision? About $60 million annually. Clinics across the country are bracing for the financial hit, and the organization is leaning heavily on donors to try to stanch the wound.

The New York Times: Planned Parenthood Refuses Federal Funds Over Abortion Restrictions

The Associated Press: Planned Parenthood Sees Swift Fallout From Quitting Program

Meanwhile, it was a bit of a roller-coaster week in terms of whether President Donald Trump would be pushing for background checks in his proposal to stem gun violence. After the dual mass shootings in El Paso, Texas, and Dayton, Ohio, Trump seemed open to the strategy, despite it being less than popular with his party. Then The Atlantic reported that following a phone call with NRA chief Wayne LaPierre, Trump softened that stance. Then Trump claimed the media reports were inaccurate and that some kinds of background checks were still on the table.

Pretty much nothing seems set in stone yet (at least publicly), and we should all just wait to see what comes in the official proposal likely to coincide with Congress’ return in September.

The Atlantic: Trump’s Phone Calls With Wayne LaPierre Reveal NRA’s Influence

Politico: Trump to Release Gun Control Proposals, Including Background Check Updates

We did find out this week exactly what was in the Parkland students’ plan, though. And let me tell you, they swung for the fences with it. Included in the roadmap: a national licensing and gun registry; a mandatory gun buyback program for assault-style weapons; a limit of one firearm purchase a month per person; the establishment of a national director of gun violence prevention; and a new multistep gun licensing system that would include in-person interviews and a 10-day waiting period before gun purchases are approved.

USA Today: Parkland Students Announce Gun Control Plan, Aim to Halve Gun Violence Rate in 10 Years

The Trump administration (and the Obama administration, as well) has long chafed at the restrictions that come with the Flores Settlement Agreement, which offers protection to detained immigrant children in U.S. custody. So, this week it released a new set of rules that effectively replace those regulations. Among other things, the new standards allow the government to detain children indefinitely instead of for 20 days, as laid out in the Flores agreement.

Reuters: Trump Imposes Rule Allowing U.S. to Detain Migrant Families Indefinitely

What’s definitely worth a read: the history behind the agreement and the story of the lawyers who have been defending it for decades. (“If someone had told me in 1985 that our work to protect children would continue into 2019, there is no way I would have believed it,” says Carlos Holguin, one of those original lawyers.)

The New York Times: The Flores Agreement Protected Migrant Children for Decades. It’s Under Threat.

Thirteen years ago, then-U.S. Surgeon General Richard Carmona was warned about some “disturbing” data that top federal scientists had discovered. It turned out that opioids were addictive and dangerous. The scientists recommended urgent action be taken to address the startling statistics, which hinted at a brewing crisis. Carmona agreed.

Yet the public was never told, and the momentum to do so fizzled. So what happened?

Politico: Federal Scientists Warned of Coming Opioid Crisis in 2006

Seemingly to further emphasize that the opioid epidemic’s early days were marked by (in retrospect) devastating missed opportunities and deep regret, another story looks at a little town in Appalachia in the late 1990s. There, a nun, a doctor and a lawyer were among the nation’s first activists to sound the alarm. Their efforts were ultimately crushed by Purdue Pharma.

The New York Times: A Nun, a Doctor and a Lawyer — and Deep Regret Over the Nation’s Handling of Opioids

Meanwhile, a study links states’ expansion of Medicaid and the uptick of opioid treatment prescription rates.

The New York Times: Opioid Treatment Is Used Vastly More in States That Expanded Medicaid

And HHS is going to relax privacy regulations around how patients’ history with addiction is noted in their charts. The rules were put in place so that patients felt comfortable seeking medical help without law enforcement being alerted, but HHS Secretary Alex Azar said they’ve become a barrier to proper care.

The Associated Press: Feds to Revamp Confidentiality Rules for Addiction Treatment

The FDA is stepping in to join the CDC’s investigation into cases of lung disease across the country that seem linked to vaping.

The New York Times: Vaping Sicknesses Rising: 153 Cases Reported in 16 States

And don’t miss the story from KHN’s own Victoria Knight about a West Virginia physician who all the way back in 2015 filed a paper on a patient with a lung disease he suspected was tied to vaping.

Years Ago, This Doctor Linked a Mysterious Lung Disease to Vaping

In this week’s miscellaneous file:

  • Emergency care in financially depressed areas has become a standoff between insolvent rural hospitals and patients who don’t have the money to pay their ER bills. That fight is ending up in court so often that locals in a small Missouri town call it the “follow-up appointment.”

The Washington Post: The ‘Follow-Up Appointment’

  • One of the side effects of the growing popularity of at-home DNA tests? More and more, people who were born using artificial insemination are finding out that their fathers aren’t the sperm donors their mothers chose but rather the doctor who performed the procedure.

The New York Times: Their Mothers Chose Donor Sperm. The Doctors Used Their Own.

Also, be sure to check out the Dallas Morning News’ original reporting from April on one of the women featured in the story.

Dallas Morning News: ABC’s ’20/20′ Features Dallas Woman Who Found Out Her Mother’s Fertility Doctor Is Her Father

  • The patient suffers from tremors, difficulty walking and loss of balance. If the patient is a man, his symptoms would be enough to have doctors start wondering if it’s Parkinson’s. But if it’s a woman, it’s chalked up to the modern-day version of what Victorians called female “hysteria.”

ProPublica: In Men, It’s Parkinson’s. In Women, It’s Hysteria.

  • For years, residents of a Newark neighborhood have been saying their water tastes funny because of the dangerous levels of lead. And yet little has been done to fix it.

The New York Times: ‘Tasting Funny for Years’: Lead in the Water and a City in Crisis

That’s it for me, and have a great weekend!

Watch: Trump-Pence Policy Shift Makes Birth Control Harder To Get

KHN correspondent Sarah Varney talks with PBS NewsHour‘s Yamiche Alcindor on Monday about how the Trump administration’s policy shift on Title X family planning funds is likely to make birth control harder to get and more expensive for low-income women. It will also shift funds from organizations like Planned Parenthood to the Obria Group, which provides women’s health care that does not include hormonal contraceptives or condoms. On Tuesday, Varney discusses  the decisions by Planned Parenthood and several states to forgo Title X funds with MSNBC’s Ali Velshi.

What The Trump Home Dialysis Plan Would Really Look Like

Mary Epp awoke from a deep sleep to the “high, shrill” sound of her dialysis machine’s alarm. Something was wrong.

It was 1 a.m. and Epp, 89, was alone at home in Marion Junction, Ala. No matter. Epp has been on home dialysis since 2012, and she knew what to do: Check the machine, then call the 24/7 help line at her dialysis provider in Birmingham, Ala. to talk to a nurse.

The issue Epp identified: Hours before, a woman she hired to help her out had put up two small bags of dialysis solution instead of the large ones, and the solution had run out.

The nurse reassured Epp that she’d had enough dialysis. Epp tried to detach herself from the machine, but she couldn’t remove a cassette, a key part. A man on another 24/7 help line run by the machine’s manufacturer helped with that problem.

Was it difficult troubleshooting these issues? “Not really: I’m used to it,” Epp said, although she didn’t sleep soundly again that night.

If policymakers have their way, older adults with serious, irreversible kidney disease will increasingly turn to home dialysis. In July, the Trump administration made that clear in an executive order meant to fundamentally alter how patients with kidney disease are managed in the U.S.

Changing care for the sickest patients — about 726,000 people with end-stage kidney disease — is a top priority. Of these patients, 88% receive treatment in dialysis centers and 12% get home dialysis.

By 2025, administration officials say, 80% of patients newly diagnosed with end-stage kidney disease patients should receive home dialysis or kidney transplants. Older adults are sure to be affected: Half of the 125,000 people who learn they have kidney failure each year are 65 or older.

Mary Epp receives a telehealth consult from a team at a dialysis clinic in Birmingham, Ala., 90 miles away from her home in Marion Junction. Epp does peritoneal dialysis at home every night while she sleeps.(Courtesy of the University of Alabama at Birmingham)

Home dialysis has potential benefits: It’s more convenient than traveling to a dialysis center; recovery times after treatment are shorter; therapy can be delivered more often and more readily individualized, putting less strain on a person’s body; and “patients’ quality of life tends to be much better,” said Dr. Frank Liu, director of home hemodialysis at the Rogosin Institute in New York City.

But home dialysis isn’t right for everyone. Seniors with bad eyesight, poor fine-motor coordination, depression or cognitive impairment generally can’t undertake this therapy, specialists note. Similarly, frail older adults with multiple conditions such as diabetes, arthritis and cardiovascular disease may need significant assistance from family members or friends.

The burden of providing this care shouldn’t be underestimated. In a recent survey of caregivers providing complex care to family members, friends or neighbors, 64% identified operating home dialysis equipment as hard — putting this at the top of the list of difficult tasks.

What experiences do older adults have with home dialysis? Several seniors doing well on home-based therapies were willing to discuss this, but they’re a select group. Up to a third of patients who try home dialysis end up switching to dialysis centers because they suffer complications or lose motivation, among other reasons.

It takes determination. Jack Reynolds, 89, prides himself on being disciplined, which has helped him do peritoneal dialysis at home in Dublin, Ohio, seven days a week for 3½ years.

With peritoneal dialysis, the therapy that Epp also gets, a fluid called dialysate (a mix of water, electrolytes and salts) is flushed into a patient’s abdomen through a surgically implanted catheter. There, it absorbs waste products and excess fluids over several hours before being drained away. This type of dialysis can be done with or without a machine, several times a day or at night.

About 10% of patients on dialysis choose peritoneal therapy, including 18,500 older adults, according to federal data.

Reynolds prefers to administer peritoneal dialysis while he sleeps — a popular option. His routine: After dinner, Reynolds sets out two bags of dialysate, ointments, sterile solutions, gauze bandages and a fresh cassette for his dialysis machine with four tubes attached: two for the dialysate bags, one for his catheter and one to expel dialysate at the end.

Altogether, it takes him 23 minutes to gather everything, clean the area around his catheter and sterilize equipment; it takes about as much time to take things down in the morning. (Yes, he has timed it.) Just before going to sleep, Reynolds hooks up to his dialysis machine, which runs for 7.5 hours. (The amount and frequency of therapy varies according to an individual’s needs.)

“I live a normal, productive life, and I’m determined to make this work,” Reynolds said.

Jack Reynolds has been doing peritoneal dialysis at home in Dublin, Ohio, seven days a week for the past 3½ years. Each night he uses two bags of dialysate, ointments, sterile solutions, gauze bandages and a fresh cassette for his dialysis machine with four tubes attached: two for the dialysate bags, one for his catheter and one to expel dialysate ready to be discarded.(Courtesy of Jack Reynolds)

It took five surgeries to successfully implant a catheter on Reynolds’ left side because of scarring from previous abdominal surgeries. He has had to replace three malfunctioning dialysis machines and learn how to sleep on his right side, so the tube connected to his catheter isn’t compressed.

In the morning, his wife, Norma, cleans the area around his catheter, applies a gauze bandage and tapes an 18-inch extender attached to the catheter to his chest. He could do this himself, Reynolds said, but “I wanted her to have some part in all this.”

Training is demanding. In December 2003, when Letisha Wadsworth started home hemodialysis in Brooklyn, N.Y., she was working as an administrator at a social service agency and wanted to keep her job. Doing dialysis in the evening made that possible.

Home hemodialysis requires one to two months of education and training for both the patient and, usually, a care partner. With each treatment, two needles are stuck into an access point, usually in a vein in a patient’s arm. Through lines connected to the needles, blood is pumped out of the patient and through a machine, where it’s cleansed and waste products are removed, before being pumped back into the body.

Only 2% of dialysis patients chose this option in 2016, including 2,800 older adults.

Letisha Wadsworth began home hemodialysis 15 years ago in an effort to keep her job as a social service agency administrator. Doing dialysis at her Brooklyn, N.Y., home in the evenings made that possible.(Courtesy of Letisha Wadsworth)

The training was “rigorous” and “pretty scary for both of us,” said Wadsworth, now 70, whose husband, Damon, accompanied her. “We learned a lot about dialysis, but we still didn’t know about issues that could arise when we got home.”

Issues that Wadsworth has had to deal with: learning what to do if air got into one of the lines. Adjusting the rate at which her blood was pumped and flowed through the machine. And, recently, getting a medical procedure to fix the access site for her needles, which had clotted with blood.

Another issue: finding space for 30 large boxes of supplies (fluids, filters, needles, syringes and more) that Wadsworth orders each month. They’re stored in two rooms in her house.

Over the years, Wadsworth has talked a lot to family members and friends about kidney failure and dialysis. “I wish I’d known about the relationship between blood pressure and kidney failure a lot earlier,” she said. “I guess I thought all black people have high blood pressure: It just comes with the territory as opposed to what we can do to prevent it.”  (High blood pressure puts people at risk of kidney failure.)

In 2013, Wadsworth had a stroke, which temporarily paralyzed her left side. “I used to set up the [dialysis] machine, but now I use a walker and I can’t really stand and set everything up the way I used to.” Damon, 73, does this for her.

Wadsworth’s current routine: Dialysis starts around 8 p.m. and goes for five hours, four days a week, in a dedicated room in her house. She passes the time eating dinner, watching TV, reading on her Kindle, talking on the phone, visiting with friends or playing Scrabble with Damon.

Like most patients on home dialysis, she gets blood tests once a month and visits her nephrologist two weeks later to review how she’s doing. A nurse, dietitian and social worker are also part of her team at the Rogosin Institute.

Damon, a psychotherapist, admits it isn’t easy to stick his wife with needles. “A lot of times, it hurts her, and it’s not fun for me to be the person doing that,” he said. “But it’s just part of my life now. We’re thankful that home dialysis exists and we’re lucky enough to be able to do it.”

It can be overwhelming. Sharon Sanders, 76, thought she had the flu last year when she had trouble breathing and keeping food down. But when she landed in the hospital, doctors told her that her kidneys were shutting down.

About half of the time, this is what happens to people who end up on dialysis: They learn suddenly that their kidneys aren’t working reliably anymore.

Like many people, Sanders was shocked. After going to classes and talking to a niece who’s a registered nurse, she decided on peritoneal dialysis. “I liked that I can do it at home, by myself, and I don’t have to stick myself with needles,” she said.

Training took about a week at a clinic in Mesa, Ariz. “It came very easy for me,” said Sanders, who lives in Gold Canyon, Ariz., and who began her nightly routine of six hours of peritoneal dialysis, five days a week, last August.

She doesn’t pay anything for the therapy, which is covered for her by Medicare and Tricare insurance, a benefit Sanders has because of her husband’s military service. (He died in 2017). Medicare Part B pays 80% of the cost of dialysis at home, and supplemental coverage (including, for instance, a Medigap policy, a retiree policy from an employer or Medicaid) generally picks up the remainder.

Sanders is a frequent visitor to Home Dialyzors United Facebook support group and another site, Home Dialysis Central. Another site, My Dialysis Choice, is a useful resource for people deciding whether home dialysis is right for them.

Even though Sanders, who has arthritis of the spine, doesn’t find her dialysis routine especially burdensome, she sometimes gets overwhelmed. “I don’t have any energy too much of the time,” she said. “I find myself thinking, What’s my purpose for doing this? Is it worth it if we’re all going to die anyway?’”

Finding needed help. Until last November, when her husband of 68 years died, Mary Epp relied on him to get her ready for peritoneal dialysis, which she receives every night while she sleeps for nine hours.

Now, an aide comes in a 7 p.m. to help Epp take a bath and set things up before dialysis begins an hour later. Another woman comes in at 5 a.m. to take her off dialysis, clean everything up and fix her breakfast.

“I’ve gotten a lot more feeble than I was” when home dialysis began in 2012, said Epp, who admitted she was “terrified” when a physician diagnosed her with kidney failure.

But the benefits of home therapy, which is overseen by a team at a dialysis clinic 90 miles away in Birmingham, remain worth it, she said. “You just go to bed and wake up the next morning and you’re ready to go and meet the day.”

Trump Administration Hits Brakes On Law To Curb Unneeded Medicare CT Scans, MRIs

Five years after Congress passed a law to reduce unnecessary MRIs, CT scans and other expensive diagnostic imaging tests that could harm patients and waste money, federal officials have yet to implement it.

The law requires that doctors consult clinical guidelines set by the medical industry before Medicare will pay for many common exams for enrollees. Health care providers who go way beyond clinical guidelines in ordering these scans (the 5% who order the most tests that are inappropriate) will, under the law, be required after that to get prior approval from Medicare for their diagnostic imaging.

But after physicians argued the provision would interfere with their practices, the Trump administration delayed putting the 2014 law in place until January 2020, two years later than originally planned.

Even then, the Centers for Medicare & Medicaid Services (CMS) slated next year as a “testing” period, which means even if physicians don’t check the guidelines, Medicare will still pay for an exam. CMS also said it won’t decide until 2022 or 2023 when physician penalties will begin.

Critics worry the delays come at a steep cost: Medicare paying for millions of unnecessary exams and patients subject to radiation for no medical benefit.

A Harvard study published in 2011 in the Journal of Urology found “widespread overuse” of imaging tests for men on Medicare who were at low risk for prostate cancer. And a University of Washington study in the Journal of the American College of Radiology that reviewed 459 CT and MRI exams at a large academic medical center found 26% of the tests were inappropriate.

“These delays mean that many more inappropriate imaging procedures will be performed, wasting financial resources and subjecting patients to services they do not need,” said Gary Young, director of the Northeastern University Center for Health Policy and Healthcare Research in Boston. “If this program were implemented stringently, you would certainly reduce inappropriate imaging to some degree.”

Doctors order unnecessary tests for a variety of reasons: to seize a potential financial advantage for them or their health system, to ease fears of malpractice suits or to appease patients who insist on them.

The law applies to doctors treating patients enrolled in the traditional fee-for-service Medicare system. Health insurers, including those that operate the private Medicare Advantage plans, have for many years refused to pay for the exams unless doctors get authorization from them beforehand. That process can take days or weeks, which irks physicians and patients.

CMS Administrator Seema Verma has sought to reduce administrative burdens on doctors with her “patients over paperwork” initiative.

CMS would not make Verma or other officials available and answered questions only by email.

A spokeswoman said CMS has no idea how many unnecessary imaging tests are ordered for Medicare beneficiaries.

“CMS expects to learn more about the prevalence of imaging orders identified as ‘not appropriate’ under this program when we begin to identify outlier ordering professionals,” she said.

‘It Takes Four Clicks On A Computer’

An influential congressional advisory board in 2011 cited the rapid growth of MRIs, CT scans and other imaging and recommended requiring doctors who order more tests than their peers to be forced to get authorization from Medicare before sending patients for such exams. In the 2014 law, Congress tried to soften the effect by asking doctors billing Medicare to follow protocols to confirm that imaging would be appropriate for the patient.

A growing number of health systems have used clinical guidelines to better manage imaging services, studies show. The University of Virginia Health System found that unnecessary testing fell by between 5% and 11% after implementing such recommendations.

Virginia Mason Health System in Seattle in 2011 set up a system requiring its physicians — most of whom are on salary — to consult imaging guidelines. It would deny claims for any tests that did not meet appropriate criteria, except in rare circumstances. A study found the intervention led to a 23% drop in MRIs for lower back issues and headaches.

Dr. Craig Blackmore, a radiologist at Virginia Mason, said he worries that, unlike the efforts at his hospital, many doctors could be confused by the Medicare program because they have not received the proper training about the guidelines.

“My fear is that it will be a huge disruption in workflow and show no benefit,” he said.

In 2014, AtlantiCare, a large New Jersey hospital system, began grading physicians on whether they consult its guidelines.

“Some doctors see this tool as additional work, but it takes four clicks on a computer or less than a minute,” said Ernesto Cerdena, director of radiology services at AtlantiCare.

Not all Medicare imaging tests will be subject to the requirements. Emergency patients are exempt, as well as patients admitted to hospitals. CMS has identified some of the most common conditions for which doctors will have to consult guidelines. Those include heart disease, headache and pain in the lower back, neck or shoulders.

Robert Tennant, director of health information technology for the Medical Group Management Association, which represents large physician groups, said the law will unfairly affect all doctors merely to identify the few who order inappropriately.

“For the most part, doctors are well trained and know exactly what tests to perform,” Tennant said.

The association is one of several medical groups pushing Congress to repeal the provision.

American College Of Radiology’s Role

The law required the federal government to designate health societies or health systems to develop guidelines and companies that would sell software to embed that information into doctors’ electronic health record systems.

Among the leaders in that effort is the American College of Radiology, which lobbied for the 2014 law and has been issuing imaging guidelines since the 1990s. It is one of about 20 medical organizations and health systems certified by CMS to publish separate guidelines for doctors.

The college wanted “to get ahead of the train and come up with a policy that was preferable to prior authorization,” said Cynthia Moran, an executive vice president of the radiology group. About 2,000 hospitals use the college’s licensed guidelines, more than any others, she said. And the college profits from that.

Moran said the licensing money helps the college defer the costs of developing the guidelines, which must be updated regularly based on new research. She said the college gives away the guidelines to individual doctors upon request and sells them only to large institutions, although she notes they are not as easy to access that way compared with being embedded in a doctor’s medical records.