Thomas Starzl, the doctor who pioneered liver transplant surgery, has died at the age of 90. In an announcement on its website, the University of Pittsburgh Medical Center said Starzl died peacefully at his home on Saturday.

“His work in neuroscience, metabolism, transplantation and immunology has brought life and hope to countless patients, and his teaching in these areas has spread that capacity for good to countless practitioners and researchers everywhere,” his family wrote in a statement issued Sunday by UPMC and the University of Pittsburgh.

“With determination and irresistible resolve, Thomas Starzl advanced medicine through his intuition and uncanny insight into both the technical and human aspects of even the most challenging problems.”

By the time he died, Starzl widely enjoyed a towering reputation in the medical profession — but this was not always the case. The doctor, who eventually became known as the “father of transplantation,” drew his fair share of criticism when he began experimenting with transplants.

“Transplanting was hardly even thought of as a possibility then,” Starzl once said. “I was working blind.”

In 1963, Starzl led the team of surgeons that performed the world’s first liver transplant. The patient, a child who had been born with half a liver, did not survive that operation due to excessive blood loss.

Undeterred, Starzl attempted the operation again just two months later on another patient who suffered from liver cancer. This time, it appeared to be a success — until the man died three weeks afterward, this time from blood clotting.

Still, Starzl kept working, also researching drugs to block the human immune system from rejecting its newly implanted organ. And by the late 1970s, the survival rate for patients undergoing liver transplantation had risen to roughly 40 percent.

When in the early ’80s he left the University of Colorado for the University of Pittsburgh, where we would go on to spend more than three decades, Starzl and his surgical team had already transplanted more than 1,000 livers. Under his leadership, UPMC would go on to become one of the world’s foremost transplant centers.

During his time there, he became known as a prolific publisher. In fact, as UPMC notes, the Institute for Scientific Information identified Starzl in 1999 as “the most cited scientist in the field of clinical medicine.” The ISI estimated that for a time he was averaging the publication of one paper every 7.3 days, according to UPMC.

For his achievements, the school renamed its transplant institute after Starzl in 1996.

By that point, however, Starzl had retired from performing surgery. Following his own coronary bypass surgery in 1990, he decided it was time to give up the scalpel — much to his personal relief, as it turns out.

“I was not emotionally equipped to be a surgeon or to deal with its brutality,” Starzl acknowledged in his 1992 memoir, The Puzzle People.

Despite Starzl’s achievements at the operating table, his family says he should perhaps be best remembered as a teacher and a friend.

“Even more extraordinary [than his medical advances] was his ability to gift that capacity to those around him, allowing his students and colleagues to discover the right stuff within themselves,” the family said in its statement.

“Nobody who spent time with Thomas Starzl could remain unaffected.”

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In the last three years, 33 U.S. states have passed laws aimed at helping dying people get easier access to experimental treatments that are still in the early stages of human testing. Supporters say these patients are just looking for the right to try these treatments.

Such laws sound compassionate, but medical ethicists warn they pose worrisome risks to the health and finances of vulnerable patients.

California’s “right to try” law went into effect in January. It protects California doctors and hospitals who want to prescribe any medicine that has successfully made it through a Phase 1 drug trial. That’s the first stage of human testing required by the Food and Drug Administration — usually, all the study participants are healthy in the small Phase 1 trial, and it focuses merely on a drug’s general safety and questions about dosage, not its effectiveness.

Phase 2 and Phase 3 drug trials watch for toxic side effects of the experimental medicine among a group of people who have the disease or condition. About 20 percent of all drugs tested in Phase 2 are found to have too many serious side effects to move on to Phase 3, the FDA says. And only between 25 and 30 percent of drugs that pass the larger Phase 3 tests for effectiveness and side-effects move on. Only after passing that several-year — and several-stage — gauntlet is a drug finally approved for market.

Assemblyman Ian Calderon, a Democrat from Southern California, and majority leader in California’s assembly, was lead author of the state’s right to try law, and thinks people who are terminally ill shouldn’t have to wait that long. He says if he had just been given a terrible diagnosis, he would want to try anything possible to live.

“My thought would be what do I have to lose?” Calderon says. “I have an opportunity to potentially find a cure. Or at least find something that prolongs my life — find something that could help me.”

He says the law seemed to him the logical next step, after California instituted a law in 2016 that now permits physician-assisted suicide.

“It’s inhumane to have a law on the books that allows you to end your own life, but no law on the books that allows you to fight to extend it,” he argues. “That just seems counter-intuitive.”

Proponents of right to try legislation contend that some doctors have been hesitant to help dying patients, for fear of being penalized for using drugs or devices that don’t have FDA approval.

California’s law ensures that doctors can help patients petition to get investigational medicine from drug makers without fear of censure from the state’s medical board. It eliminates regulatory obstacles on the state level, and creates processes for patient consent and data collection.

David Huntley, a San Diego State University professor who died from ALS, or Lou Gehrig’s disease, in 2015, was among the patients who fought for California’s law.

Before he died, Huntley testified in favor of the bill in Sacramento from his wheelchair.

His widow, Lina Clark, founder of the patients’ advocacy group HopeNowforALS, says her husband completely understood what was at stake.

“The patient community is saying: ‘We are smart, we’re informed, we feel it is our right to try some of these therapies, because we’re going to die anyway,’ ” she says.

It’s a compelling argument, but there are serious risks according to doctors and medical ethicists.

“We know some people try to take advantage of our desperation when we’re ill,” says Dr. R. Adams Dudley, director of UCSF’s Center for Healthcare Value. “If we take the FDA out of it, how do we protect people from physicians or drug companies that will want to sell them things and will want to prey on their desperation?”

Dudley says the FDA and the clinical trial process were put in place for a reason — not just to shut out would-be snake oil salesman, but also to ensure that manufacturers are producing a safe product, and not cutting corners.

“If you say there’s a path that’s not through the FDA,” he says, “then there are billions of dollars out there to be made by skipping the important steps that we’ve developed.”

Dudley thinks “right to try” is a misnomer in describing these state laws; all that patients can really do is ask for an experimental medicine. Drug companies don’t have to give them the medicine, and insurance companies don’t have to pay for it.

Patients could spend huge amounts of money trying a drug that hasn’t been proved to work, he says. And the patient may also be giving up their hopes for a controlled, peaceful death at home.

“Instead you try a drug and you get very severe lung problems,” Dudley says, “and you end up on a breathing machine in a hospital. That could cost hundreds of thousands of dollars.”

Although nearly three dozen right to try laws are now on the books, researchers at New York University who have been looking for evidence of the laws’ usefulness haven’t yet found a single substantiated case of a patient getting a drug by using a state law.

That’s partly, perhaps, becausethe FDA already has a process to help patients and their doctors apply for the use of experimental drugs (and such requests are nearly always approved). Still, Calderon, Clark and others point out that the process entailed in these “compassionate use requests” is much too slow and cumbersome for many patients who are dying.

A new federal research law might help change that. The 21^st Century Cures Act requires drug companies to be more transparent about how they decide who gets experimental access to promising medications, and how long it will take.

This story is part of a reporting partnership with NPR, KQED andKaiser Health News. Carrie Feibel is a health editor and reporter for KQED, and a contributor to Kaiser Health News.

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U.S. Rep. Frank Pallone, a Democrat from New Jersey, has been trying to get a look at the Republicans’ bill to repeal and replace the Affordable Care Act, also known as Obamacare.

He’s the top-ranking Democrat on the House Energy and Commerce Committee, which will have to approve the bill before the whole House can vote on it.

But as of Thursday afternoon, Pallone still couldn’t get his hands on a copy.

“We have no idea right now what they’re considering,” he said of his Republican colleagues.

Rep. Greg Walden, a Republican from Oregon and the Energy and Commerce Committee’s chairman, made draft legislation available to Republicans on the panel Thursday, but they had to read it in a private room and weren’t allowed to make copies.

When the location of that room leaked on Twitter late Thursday morning, reporters filled the hallway outside the room’s door on the first floor of the U.S. Capitol. Pallone, along with his Democratic House colleagues Jan Schakowsky, from Illinois, and Joseph Crowley, from New York, also stopped by.

But when they went in, the room was empty.

“We were looking for the bill but there’s no one there,” Pallone said.

That room was just down the hall from House Majority Leader Kevin McCarthy’s office, so Pallone went in to ask McCarthy where he could see the legislation. McCarthy directed him to Walden’s office.

Luckily, Walden had a Capitol “hideaway” office just down the hall.

Pallone led his colleagues, a string of reporters and even a couple of Capitol Police officers to the unmarked door, knocked and waited.

“It’s locked,” he said after trying the handle. “This is ridiculous.”

He paused and looked at the crowd. “Do you want to go to Rayburn?”

He was referring to the Rayburn House Office Building, across Independence Avenue from the Capitol. It’s where Walden’s personal office and the Energy and Commerce Committee offices are.

Everybody wanted to go.

As we strolled the halls of the Capitol, down elevators and through the underground tunnel that leads to the House office buildings, Pallone reflected on why his Republican colleagues were keeping the legislation under lock and key.

“I think they’re afraid,’ he said. “I think they’re afraid that it will show that it really doesn’t cover most of the people that receive coverage under the Affordable Care Act.”

Even many Republicans weren’t invited to view the latest draft; Sen. Rand Paul from Kentucky condemned the GOP leadership Thursday for not making it more widely available.

Last week, an earlier draft of the bill, dated Feb. 10, was leaked to Politico.Most analysts said that legislation would lead to millions of people losing coverage. And members of the House Freedom Caucus, considered the most conservative wing of the Republican Party, said they would oppose the bill because it includes refundable tax credits for people who are too poor to pay any federal income tax.

Pallone said he was pushing to get a copy of the most recent draft of the bill because he had heard Walden intends to have the committee vote on it next Wednesday — a timeline that wouldn’t give the Democrats and the public much time to analyze the legislation.

He compared what the Republicans are doing this week with what theDemocrats did with their draft of the Affordable Care Act several years ago; Democrats posted the text of the ACA online 30 days before it went to members for a vote.

“The reason why Republicans were able to comment on the ACA — and of course many of them commented negatively — was because the bill was out there,” Pallone said.

At Walden’s personal office in the Rayburn building, Andrew Malcolm, Walden’s deputy chief of staff, told Pallone he would be better off directing questions about the bill to the Energy and Commerce Committee office. It was an awkward conversation as Pallone asked repeatedly whether Walden would be there, and Malcolm refused to answer.

“That’s not helpful,” Pallone said. “He’s probably ducking us.” Still, Pallone headed to that committee office, as Malcolm suggested.

And just as Pallone walked in, Walden came down the hall walking very quickly, trailed by some of his staff. He scowled at Pallone and the crowd of reporters in his lobby, then headed out a back hallway toward the hearing room next door. He didn’t say a word.

“Well, obviously he doesn’t want to talk,” Pallone said. “I’m not going to keep chasing him. I’m tired of chasing him around. Obviously he doesn’t want us to see the bill.”

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If you’re failing less, then you’re succeeding more, right? That’s exactly what appears to be happening with birth control in the United States, according to a new study released by the Guttmacher Institute.

Contraceptive failure rates for all of the most common contraceptives (think: the pill, condoms, and IUDs) fell from 2006-2010, according to the most recent data collected for the Center for Disease Control and Prevention’s National Survey of Family Growth.

Overall, the one-year failure rate for forms of contraception dropped from 12 percent in 2002, the last time the data was collected, to about 10 percent. For some methods, the drop was much larger; others saw smaller declines. The decliner was more pronounced if you look back to 1995, when the overall failure rate for all methods was nearly 15 percent.

It’s not clear what’s causing the improvement, says Kathryn Kost, a co-author of the report. Kost says possible explanations include women moving from less effective birth control options to more effective ones; more consistent and correct use of available methods (check out this handy comparison chart here;) and what she describes as “major public health efforts” in recent years to improve public knowledge about contraception.

The option the study found least likely to fail was long-acting reversible contraceptives, or LARCS, like IUDs, which had about a 1 percent failure rate. But even less-reliable options, like condoms, saw their failure rates fall significantly over the long-term, from 18 percent in 1995 to 13 percent in the latest survey.

Kost says the improvement in the success rate of male condoms is important because unlike other forms of birth control, condoms also help prevent sexually transmitted diseases, and are one of the few contraceptive methods readily available to men.

“We should probably be exploring men’s role in these improvements,” she says.

Whatever the reason, Kost says, the bottom line is clear: “We’re seeing declines in abortion rates; we’re seeing declines in birth rates. So we know that American women are not getting pregnant unintentionally at the same levels that we had been observing.”

The analysis did find disparities in the effectiveness of contraceptives for some groups of women. African American and Latina women had higher contraceptive failure rates compared with white women, and low-income women had a higher rate of failure than those earning at least 200 percent above the federal poverty level. The study did not adjust for poverty when assessing racial and ethnic disparities, but noted that poverty is likely a factor.

Dr. Molly Findley is an obstetrician-gynecologist who practices in New York City, and a former LARC fellow with the American Congress of Obstetricians and Gynecologists.

She says low-income patients in particular may struggle to get consistent reproductive health care because of lack of insurance, access to healthcare providers, or other barriers.

“Their childcare falls through; they can’t come to the appointment. The bus is late. They missed their appointment because their mom got sick and they have to go to the hospital with their mom,” Findley says. “There’s so many different reasons why my patients have a hard time accessing the healthcare they need and deserve.”

Findley calls the overall decline in birth control failure rates “heartening.” She points to the growing use of long-lasting methods, which she says allow women to choose contraceptives that may better fit their needs.

“Women who know themselves, women who have a lifestyle that says, ‘Yeah, I can take a pill every day; I can remember that.’ Those are the women that are continuing to use birth control pills. So those are the women who are good at it,” she says.

“And the women who have a lifestyle that’s hectic, that doesn’t let them to remember to take a pill every day, they have more options that they can use now.”

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Many Republican leaders have promoted the idea that consumers should have a “health care backpack,” which would make it possible to take insurance from job to job or when moving, starting a business or retiring.

The concept — often referred to as “portability” — is appealing. Why should a health plan be tied to where you work or live? The answer, of course, is “it’s complicated.” As Republicans debate ideas for repealing and replacing the Affordable Care Act, portability might play a central role in their plan. So how would that work?

Portability Is Hard To Define

The notion of “portability” in the purest sense means that consumers can stick with the same insurer, the same benefits and the same coverage limits, even if they move or change jobs. In the current policy discussion, though, portability is more likely to be viewed as a means for consumers to get access — possibly with the help of a tax credit — to a variety of health plans.

If keeping the same plan is the goal, that would be very tricky. The health care system is just not built that way.

Among the health plans 156 million of us get from our jobs, only a few insurers offer national networks of participating doctors and hospitals. And most of the plans available to people who buy their own insurance through the individual or small group market are local and limited by specific geographic areas. Policyholders who move away generally must change carriers. And insurers sometimes pull out of markets, meaning stranded consumers would also have to pick new plans.

Such factors could create a predicament for Republicans similar to the “if-you-like-your-health-plan-you-can-keep-it” problem that bedeviled President Barack Obama when tens of thousands of consumers had to change their coverage after the ACA took effect.

Take A Tax Credit Instead

Because of these hurdles, some advocates suggest a portable tax credit. The proposals vary, but here’s how it could work: If a consumer moves or quits a job to start a business or go back to school or take an early retirement, they would get a tax credit they could apply to pay for their new insurance.

“To get to true portability, you have to be able to choose a plan and have the same subsidy … and take [the subsidy] it with you when you leave,” says Stuart Butler, a senior fellow at the Brookings Institution, a D.C.-based think tank. That’s how the ACA subsidy works. It uses an advance tax credit calculated by income.

In contrast, several of the GOP proposals would link the subsidy to age instead of income, with older consumers who likely have higher health costs and premiums getting a bigger credit, although the amounts debated are generally less than what consumers now receive under the health law. Also, the proposals generally do not link the credits to the cost of insurance, potentially creating unhappy consumers in high-premium regions.

Current Portable Coverage Poses Political Problems

Portable coverage already existed before Obamacare. The Federal Employees Health Benefit Program, the military’s TriCare and Medicare all offer such coverage. But enrollment in those programs is limited to specific groups: federal workers, military members and their families, certain qualifying people with disabilities and those older than 65.

When running for president, Sen. Bernie Sanders, I-Vermont, suggested a Medicare-for-All plan, an idea popular among the left. But the current GOP-controlled Congress is unlikely to adopt this approach or to call for opening the federal employee program or the military plan to the general public.

Covering everyone through a single-payer system — common in Europe — where the government pays the bills but private providers or government agencies offer the medical care, also would fall into this category but is currently a political nonstarter in the U.S.

A Risk To Job-Based Insurance

Employers who provide work-based coverage fear that if Congress makes health plans too portable, meaning everyone has access to the tax credits, the youngest and healthiest might peel away from their employer plans’ risk pools to buy insurance. This would drive up premiums for those who remain. To prevent that, several GOP plans — including House Speaker Paul Ryan’s — would bar people with job-based coverage from getting a credit. But others, including the plan put forward last year by now-Health and Human Services Secretary Tom Price, don’t include that prohibition.

Pre-Existing Conditions? Separate Rules

To be truly portable, consumers must be offered plans regardless of their health status, age or other considerations. Before the health law was enacted, insurers could reject people with medical conditions. But the ACA prohibits insurers from redlining sick people or charging them higher premiums. Although popular in opinion polls, those Obamacare provisions may face some changes under the GOP plans.

Ryan’s plan would allow a one-time open enrollment during which uninsured people could sign up no matter their health status. Waiting would result in higher premiums.

Price’s plan would require insurers to accept all comers during enrollment periods every two years. His plan would also require consumers to maintain continuous coverage, or risk having preexisting conditions excluded from future coverage.

Kentucky Sen. Rand Paul’s plan would do away with the “guarantee issue” requirement altogether and allow insurers to exclude medical conditions from coverage.

Cheaper Plans, Less Coverage

Cost is essential to portability because if consumers can’t afford insurance, it doesn’t matter that it can move with them. To bring premiums down, some Republicans suggest easing the health law’s essential benefits requirements. More flexibility for these rules could spark competition and open the market to added options, from low-cost, “bare-bones” plans to high-premium comprehensive coverage, proponents say.

“From a consumer perspective, it’s important to have wide choice,” says Butler.

But the less expensive plans would likely be more restrictive and exclude coverage for some services, such as prescription drugs.

Some experts warn that without some benefit rules, plans could end up in a “race to the bottom,” with few insurers wanting to offer broad benefits at the risk of attracting the sickest enrollees.

“If their answer is to make it affordable by stripping down the benefits, then you leave families exposed to a lot of financial risk if something happens to them,” says Sabrina Corlette, a research professor at the Center on Health Insurance Reforms at Georgetown University.

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

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In recent days, several Republican lawmakers have faced crowds of constituents at town hall meetings around the country who are angry that they may be in danger of losing their health coverage.

A GOP draft bill, recently obtained by Politico, would likely do little to assuage these concerns.

The Feb. 10 document follows the broad policy outline released by Republicans last week just before they went home for a Congressional recess. It proposes cuts to federal payments to states that have expanded Medicaid and offers tax credits for people to buy health insurance.

“This would mean fewer people could afford health insurance and that the health insurance would likely cover less,” says Larry Levitt, senior vice president at the Kaiser Family Foundation.

Under the plan, states that expanded eligibility for Medicaid would see their supplemental federal funding rolled back. The program would also be converted from a federal-state program that pays for all the health care beneficiaries get, to one where Washington sends a fixed amount of money to each state for each Medicaid enrollee.

To help people who don’t get insurance through their employer buy coverage, the bill offers age-based tax credits that start at $2,000 for individuals under age 30. It would rise to $4,000 for those over 60. Those credits are unlikely to cover the full cost of a plan that pays for routine health care, but could potentially pay for insurance that protects against a catastrophic health event.

Levitt says those credits are less generous than the subsidies offered under Obamacare.

The draft bill is consistent with what Republicans have been saying they want to see in place of Obamacare, says Rodney Whitlock, vice president of health policy at ML Strategies.

“No surprises here,” says Whitlock, who was formerly the Republican health policy director for the Senate Finance Committee. “These are all ideas Republicans have championed. Now the Congressional Budget Office will decide if they agree.”

The Congressional Budget Office will “score” the ultimate bill, estimating how how many people it’s likely to cover and its impact on the federal budget.

Spokesmen for the House Energy and Commerce, and Ways and Means committees, which are drafting the legislation, declined to comment on the leaked bill.

It’s not clear that the details in the two-week-old draft bill, such as the size of the tax credits, are still being considered. One House staffer says lawmakers are testing different scenarios with the Congressional Budget Office, comparing cost and coverage levels, and fine tuning the legislation.

The draft bill would also get rid of the taxes created under the Affordable Care Act, including taxes on medical device makers and health insurers. Instead, it would limit how much employers can deduct for expensive insurance policies they give to their workers.

It would also eliminate the mandate for individuals to buy insurance.

The bill attempts to encourage healthy people to buy insurance by mandating that they cannot be charged more for existing medical conditions, or, once they get sick, if they maintain continuous coverage. People who elect not to buy insurance at the outset would pay a surcharge when they do, and could end up paying more if they’ve been ill.

Levitt is not convinced the Republican’s continuous coverage plan would work.

“Republicans are struggling to find the Holy Grail of how to get healthy young people to buy insurance,” he says. “I’m not sure they’ve found it here, but it’s a legitimate struggle.”

Senate Democrats denounced the proposal. “This isn’t a replacement, it’s a recipe for disaster,” says Senate Democratic Leader Charles Schumer, N.Y. “Republicans are determined to put insurance companies back in charge, make health insurance more expensive for millions of Americans, restrict women’s access to vital health services by by defunding Planned Parenthood, shift costs to states and dismantle Medicaid, while kicking millions more off of their plan.”

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No matter where you stand on the political spectrum, health care under the Affordable Care Act is going to change in the next few years. The Republican-led Congress has vowed to “repeal and replace” the health law known as Obamacare.

That has left many people anxious and confused about what will happen and when. So NPR’s Morning Edition asked listeners to post questions on Twitter and Facebook, and we will be answering some of them here and on the radio in the weeks ahead.

Many of the questions so far have to do with timing.

For example, Steva Stowell-Hardcastle of Lewisburg, Penn., says: “I’m confused about what parts of the ACA have been repealed and when those changes take place.”

First, despite social media headlines, nothing substantive has been changed in 2017. That’s because making these changes is harder than it looks.

In January, Republicans in Congress passed a budget resolution that called for major changes to the law to be made in a subsequent bill.

Even though that process would allow them to pass a bill without Democratic votes, they haven’t been able to agree on what those reforms should look like.

And there are several other obstacles.

First of all, they won’t be able to repeal everything in one go, which counters a lot of the rhetoric coming out of the election. And they would be limited in what parts of the law they can replace.

That said, the Trump Administration has taken some action, but no concrete changes – yet. In January, Trump signed an executive order calling for federal agencies to “waive, defer, grant exemptions from, or delay the implementation of any provision or requirement of the act” that would “impose a fiscal burden” on states, individuals, healthcare providers, and others in the health industry.

While that could be widely interpreted, so far the only federal action in response to that order has come from the IRS. The IRS says it will not strictly enforce the “individual mandate” that requires most Americans to have health insurance. The agency noted, however, the requirement is still law.

A related question comes from Kathryn Henry of Iowa City, Iowa. She asks “if it is repealed, what happens to people like me who currently have insurance through it and when?”

Both President Trump and GOP congressional leaders have insisted that they want a smooth transition from the current system to a new one, particularly for the 11 million or so people who purchased coverage on the federal or state health insurance exchanges since the law took effect.

“We don’t want to pull the rug out from under people while we’re replacing this law,” said House Speaker Paul Ryan, R-Wisc., in January. Trump has insisted that repealing the law and replacing it be done “essentially simultaneously,” so as not to leave people without insurance.

Unless something unexpected happens, people who purchased insurance for 2017 should be covered through the remainder of the year.

The bigger question is what happens in 2018. The uncertainty alone is prompting some insurers to pull out of the individual insurance market — the market in which people don’t get insurance through their employer. The individual market is the most affected by the health law.

For example, the insurance company Humana has already said it won’t participate in the health insurance exchanges next year, and the CEO of Aetna told reporters that his company might drop out, too. If Congress deadlocks over how to overhaul the health law, more insurance companies could follow suit.

Insurers were supposed to tell the federal government if they planned to participate in the insurance exchanges by May 3, but the Trump Administration has now given them until the end of June.

Got more questions about what’s happening to the ACA? I’ll be back next week with answers. Just tweet @MorningEdition using the hashtag #ACAchat.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

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Disability rights activist Nick Dupree died last weekend. Tomorrow would have been his 35th birthday.

Back in 2003, he told NPR: “I want a life. I just want a life. Like anyone else. Just like your life. Or anyone else’s life.”

He got that life.

Dupree had a severe neuromuscular disease and was living in Mobile, Ala. He was in a wheelchair and depended on a respirator to breathe. The state paid for nurses to come into his home — even take him to college classes. But that care was about to end the day he turned 21. He faced going to a nursing home, where he feared he would die.

Every state has a program that pays for care for severely disabled children to live at home, but not every state continues that care into adulthood. When Dupree was 19, he started Nick’s Crusade — an online campaign to change the rules in Alabama.

Just a few days before his 21st birthday, he won. In 2008, he decided to move to New York City.

“I assisted him moving to New York, which was very, very scary for me,” says Dupree’s mother, Ruth Belasco. “But, I figured that his joy would outweigh my fear.”

In New York, Dupree made friends. He went to museums. He could move just the tip of his thumb and his index finger. And if someone placed his hand on a computer track ball, he could draw. That’s how he made online comic books that reflected his quirky humor.

Like Theodore Roosevelt and the Rough Riders versus Zombies.

Something else happened in New York, too:

“It was just wonderful that he fell in love,” Belasco says. “And it was a wonderful story. And it was something that he always hoped for; [he was a] very romantic young guy and he actually found someone who loved him and he loved in return.”

He’d met the love of his life — Alejandra Ospina — online. Their wedding ceremony was in Central Park.

“We had vows. We had lots of people,” says Ospina, who has cerebral palsy and also uses a wheelchair. “There was food. And it was very windy that day, which didn’t play well with the ventilators. But it was all right.”

Still, like many other people with disabilities, they didn’t legally marry. If they had, their incomes would have been counted together, and Medicaid would have cut Nick’s benefits.

“He lived with me in an apartment in the community for seven years and 8 months,” Ospina says.

She knows exactly because that’s how Nick — who wasn’t supposed to live past his 21st birthday — counted time.

The ending to Nick’s story, though, isn’t a happy one.

The people who loved him ended up feeling helpless and guilty. Providing the round-the-clock care became difficult. When nurses didn’t show up for their shifts, Ospina and Dupree would fight over caregiving.

They separated last spring and Dupree decided to move to a hospital — the place he’d tried to avoid his whole life.

In the past 10 months, he moved between a hospital and nursing homes. He got pneumonia and bed sores.

“Each time he got sick again, it would be worse and worse and worse,” Belasco says. “And his ability to withstand that just ran out.”

Belasco says she wanted her son to come home to Alabama. But that wasn’t easy. She already cares for his younger brother who has the same disease. She takes the night shift seven nights a week, sleeping during the day.

And then last week, Nick fell ill with sepsis and heart problems. He died at a hospital in New York City.

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There’s a lesson about one of the testosterone studies released this week that has nothing to do with testosterone: The study on how testosterone affects anemia was designed with an ethical lapse that nobody noticed until the study was complete.

That’s surprising because it was designed and carried out by a couple of dozen of well-regarded scientists. Their protocols were reviewed by 12 university institutional review boards, whose job is to evaluate the ethics of an experiment. It was funded by the National Institutes of Health, and the trial was overseen by a watchdog data safety and monitoring board.

But all of those safety features fell short this time.

A reviewer at JAMA, the journal of the American Medical Association, noticed that participants who were diagnosed with anemia (low iron in the blood) at the outset of the study were not told of that fact.

“Abnormal results on this simple blood test could have been an early warning sign of a serious illness which, if diagnosed and treated early could have greatly improved patient outcomes,” says Dr. Bernard Lo, a bioethicist who runs the Greenwall Foundation.

Lo says low iron levels could be an early sign of colorectal cancer, which is quite treatable if it’s caught early. Lo noted that 126 of the 788 study participants had low iron in the blood, but nobody thought to inform them.

Scientists do not know whether this lack of information actually harmed any of the participants. “But my own feeling is if it happened once, despite all these safeguards, it could happen again” in another major study, Lo says. “It’s a warning sign that there’s a major problem in the system that needs to be addressed.”

Lo and Dr. Deborah Grady at the University of California-San Francisco wrote an editorial about the ethical lapse in JAMA Internal Medicine that accompanied articles about anemia and other studies that showed some benefits and some downsides to prescribing testosterone supplements to older men with low levels.

Testosterone supplements have been controversial for some time, and the Food and Drug Administration increased its warnings about the potential cardiac side effects of taking the hormone in 2015.

Dr. Peter Snyder, a professor of medicine at the University of Pennsylvania who organized the anemiastudy, readily admits this was an oversight. He says the scientists and review boards had focused their attention on potential harms from the testosterone treatment.

“We put an enormous amount of time and effort into attempting to protect the participants [from the side effects of testosterone], and that’s where our focus was,” he says.

Testosterone can affect the prostate and the heart, so the study was designed to watch for those health risks.

Men with severe anemia were excluded from the trial to begin with, Snyder says. “Men who had a mild degree of anemia weren’t informed because we just didn’t think of that,” he tells Shots. “It didn’t occur to anybody until this review pointed it out.”

Snyder says scientists followed up by sending a letter to all 788 participants, informing of them of their iron levels at the start of the trial as well as at the end.

He says since the trial has now ended, there is no plan to systematically study the men who had mild anemia. “At this point we have not been notified of any problem.”

Ethical lapses like this are not often recognized or highlighted. Lo says this occasion provides an opportunity to trouble-shoot a system that should not fail like this.

Lo says the ethical lapse was not enough to prevent publication of the study.

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Some Republicans looking to scrap the Affordable Care Act say monthly health insurance premiums need to be lower for the individuals who have to buy insurance on their own. One way to do that, GOP leaders say, would be to return to the use of what are called high-risk insurance pools.

But critics say even some of the most successful high-risk pools that operated before the advent of Obamacare were very expensive for patients enrolled in the plans, and for the people who subsidized them — which included state taxpayers and people with employer-based health insurance.

The argument in favor of high-risk pools goes like this: Separate the healthy people, who don’t cost very much to insure, from people who have pre-existing medical conditions, such as a past serious illness or a chronic condition. Under GOP proposals, this second group, which insurers fear might be expected to use more medical care, would be encouraged to buy health insurance through high-risk insurance pools that are subsidized by states and the federal government.

Republican Speaker of the House Paul Ryan made the case for high-risk pools on public television’s Charlie Rose show in January.

“By having taxpayers, I think, step up and focus on, through risk pools, subsidizing care for people with catastrophic illnesses, those losses don’t have to be covered by everybody else [buying insurance], and we stabilize their plans,” Ryan told the TV host.

Minnesota’s newest congressman Jason Lewis (R-Minnesota) recently endorsed high-risk pools on CNN.

“Minnesota had one of the best … high-risk insurance pools in the country,” Lewis said. “And it was undone by the ACA.”

It’s true that the Affordable Care Act banned states’ use of high-risk pools, including the Minnesota Comprehensive Health Association, or MCHA. But that’s because the MCHA was no longer needed, the association’s website explains; the federal health law requires insurers to sell health plans to everybody, regardless of their health status.

Supporters of the MCHA approach tout a return to it as a smart way to bring down the cost of monthly premiums. But MCHA had detractors, too.

Craig Britton of Plymouth, Minn., once had a plan through the state’s high-risk pool. It cost him $18,000 a year in premiums.

Britton was forced to buy the expensive MCHA coverage because of a pancreatitis diagnosis. He calls the idea that high-risk pools are good for consumers “a lot of baloney.”

“That is catastrophic cost,” Britton says. “You have to have a good living just to pay for insurance.”

And that’s the problem with high-risk pools, says Stefan Gildemeister, an economist with Minnesota’s health department.

“It’s not cheap coverage to the individual, and it’s not cheap coverage to the system,” Gildemeister says.

MCHA’s monthly premiums cost policy holders 25 percent more than conventional coverage, Gildemeister points out, and that left many people uninsured in Minnesota.

“There were people out there who had a chronic disease or had a pre-existing condition who couldn’t get a policy,” Gildemeister says.

And for the MCHA, even the higher premiums fell far short of covering the full cost of care for the roughly 25,000 people who were insured by the program. It needed more than $173 million in subsidies in its final year of normal operation.

That money came from fees collected from private insurance plans –- which essentially shifted a big chunk of the cost of insuring people in MCHA program to people who get their health insurance through work.

Gildemeister ran the numbers on what a return to MCHA would cost. Annual high-risk pool coverage for a 40-year-old would cost more than $15,000, he says. The policy holder would pay about $6,000 of that, and subsidies would cover the more than $9,000 remaining.

University of Minnesota health policy professor Lynn Blewett says there is a better alternative than a return to high-risk pools. It’s called “reinsurance.” In that approach, insurers pay into a pool that the federal government administers, using the funds to compensate health plans that incur unexpectedly high medical costs. It’s basically an insurance program for insurers.

The big question is whether lawmakers will balk at the cost of keeping premiums down for consumers — whatever the approach, Blewett says.

“The rub is, where that funding is going to come from?” she says. “And is the federal government or the state government willing to put up the funding needed to make some of these fixes?”

The national plan Ryan proposes would subsidizehigh-risk pools with $25 billion of federal money over 10 years. The nonpartisan Commonwealth Fund estimates the approach could cost U.S. taxpayersmuch more than that — almost $178 billion a year.

Researchers at the consulting firm McKinsey & Company say reinsurance would likely cost about a third of what the high-risk pool option would.

This story is part of NPR’s reporting partnership with Minnesota Public Radio andKaiser Health News.

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