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How U.S. Health Care Became Big Business

The current health care system focuses too often on financial incentives over health or science, says Elisabeth Rosenthal in her new book, An American Sickness.

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Health care is a trillion-dollar industry in America, but are we getting what we pay for? Dr. Elisabeth Rosenthal, a medical journalist who formerly worked as a medical doctor, warns that the existing system too often focuses on financial incentives over health or science.

“We’ve trusted a lot of our health care to for-profit businesses and it’s their job, frankly, to make profit,” Rosenthal says. “You can’t expect them to act like

On the ways the health-care industry stands to profit more from lifetime treatment than it does from curing disease

If you’re a pharmaceutical manufacturer and you have a problem like diabetes, for example, if I invented a pill tomorrow that would cure diabetes — that would kill a multi-billion dollar business market. It’s far better to have treatments, sometimes really great treatments … [that] go on for life. That’s much better than something that will make the disease go away overnight.

On how prices will rise to whatever the market will bear

Another concept that I think is unique to medicine is what economists call “sticky pricing,” which is a wonderful term. It basically means … once one drugmaker, one hospital, one doctor says “Hey we could charge $10,000 for that procedure or that medicine.” Maybe it was $5,000 two months ago, but once everyone sees that someone’s getting away with charging $10,000, the prices all go up to that sticky ceiling. …

What you see often now is when generic drugs come out … the price doesn’t go down to 20 percent of the branded price, it maybe goes down to 90 percent of the branded price. So we’re not getting what we should get from a really competitive market where we, the consumers, are making those choices.

On initiating conversations early on with doctors about fees and medical bills

You should start every conversation with a doctor’s office by asking “Is there a concierge fee? Are they affiliated with a hospital? Which hospital are they affiliated with? Is the office considered part of a hospital?” In which case you’re going to be facing hospital fees in addition to your doctor’s office fees. You ask your doctor always … “If I need a lab test, if I need an X-ray, will you send me to an in-network provider so I don’t get hit by out-of-network fees?” …

Often that will be a little hard for your doctor, because they may have to fill out a different requisition, but it’s worth asking. And any doctor who won’t help you in that way, I think, isn’t attuned to the financial cost that we’re bearing today.

On getting charged for “drive-by doctors” brought in by the hospital or primary doctor

You do have to say “Who are you? Who called you?” and “Am I going to be billed for this?” And it’s tragic that in recovery people have to think in this kind of keep-on-your-guard, somewhat adversarial way, but I think if we don’t push back against the system in the way it bills, we’re complicit in allowing it to continue.

On how to decipher coded medical bills

Don’t be alarmed by the “prompt payment discount.” Go back to the hospital and say, “I want a fully itemized bill. I want to know what I’m paying for.” Some of it will be in codes, some of it will be in medical abbreviations. I’ve discovered you can Google those codes and find out what you’re being charged for, often, and most importantly, you might find you’re being charged for stuff that obviously you know you didn’t have.

Elizabeth Rosenthal is editor-in-chief ofKaiser Health News,an editorially independent news program of the Henry J. Kaiser Family Foundation and a partner of NPR’s. Neither KFF nor KHN is affiliated with Kaiser Permanente. Radio producer Sam Briger and web producers Bridget Bentz and Molly Seavy-Nesper contributed to this story.

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A Baby With 3 Genetic Parents Seems Healthy, But Questions Remain

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Mitochondrial diseases can be passed from mothers to their children in DNA.

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Last fall, the New York-based reproductive endocrinologist John Zhang made headlines when he reported the birth of the world’s first “three-parent” baby — a healthy boy carrying the blended DNA of the birth mother, her husband and an unrelated female donor.

The technique, called mitochondrial replacement therapy, allowed the 36-year-old mother to bypass a defect in her own genome that had led, twice before, to children born with Leigh syndrome, a devastating neurological disorder that typically culminates in death before age 3.

While heralded in many circles as a breakthrough, the news triggered numerous ethical and scientific questions, many of which remained unanswered at the time. Last week, Zhang and his colleagues at the New Hope Fertility Center provided some answers — and raised yet more concerns.

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John Zhang of the New Hope Fertility Clinic in Manhattan performed the procedure that used DNA from three people to create a baby boy.

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Their new report, published in the journal Reproductive BioMedicine Online, describes both the technique and the participants in greater detail, something that fellow researchers had demanded in order to properly scrutinize Zhang’s methodology.

But in publishing the new material, the journal editors themselves also noted that Zhang’s report still contains “weaknesses and limitations in a number of areas,” including lingering questions about informed consent, the full risks of mitochondrial replacement therapy and the long-term health of the child.

“Although we were able to encourage the authors to include more details of their work in the submission,” journal editor and clinical embryologist Mina Alikani noted in an accompanying editorial co-written with her colleagues, “some uncertainties concerning methodologies and results still remain.”

In a statement provided by the New Hope facility, Zhang conceded that more work needs to be done. “There is always concern about any new procedure and innovation implemented on humans,” Zhang said. “We agree that there are still a lot of unknowns about this technique and will make every effort to monitor the boy’s ongoing progress and test for any adverse outcomes.”

A key weakness in Zhang’s work, according to critics, is that the procedure is not approved in the United States, which forced the team to undertake the procedure in Mexico. “This particular experiment is being done almost entirely outside the normal regulatory structure,” says bioethicist and pediatrician Jeffrey Botkin of the University of Utah, who participated in an Institute of Medicine committee last year that issued a call for more animal research on mitochondrial replacement therapy.

Without proper oversight, Botkin says, vital questions about the technique, as well as the impact of such experiments on resulting embryos, remain difficult to answer.

As it stands, Congress last year prohibited the Food and Drug Administration from considering applications for research in this area, but in December the U.K.’s Human Fertilization and Embryology Authority agreed to let clinics apply to try the procedure on a case-by-case basis. In March, it granted a license to carry out the first procedure to Doug Turnbull, director of the Wellcome Trust Center for Mitochondrial Research at Newcastle University.

“We’re going to look to those in Britain,” Botkin says, “to do careful trials and help us better understand how this technique works.”

In broadest terms, Zhang and his colleagues lifted the nucleus out of the egg of the original mother, leaving behind most — though not all — of her defective mitochondria, which would have led to the almost certain development of Leigh syndrome in the fetus. They then placed that nucleus inside a healthy donor woman’s egg, whose own nucleus had been removed. The result was a hybrid egg with the original mother’s nuclear genes and the donor mother’s cytoplasm and mitochondria. The hybrid egg was fertilized by the father’s sperm and implanted in the birth mother.

The technique could potentially prevent a wide range of mitochondrial diseases, ranging from hereditary blindness to progressive muscle wasting.

A key problem, however, is that not all of the defective mitochondria can be eliminated. The boy, Zhang reports in the new paper, currently carries between 2.36 and 9.23 percent of potentially defective DNA, according to sampling of his urine, hair follicles and circumcised foreskin.

“That’s not surprising,” says Doug Wallace, head of the Center for Mitochondrial and Epigenomic Medicine at the Children’s Hospital of Philadelphia, who was not involved in the study. “As far as I know, very few cases have been found where there is absolutely no carryover of mitochondria from the donor nucleus.”

Even at a 9 percent load of defective DNA, Wallace said, most people with Leigh Syndrome will appear normal. He added that while it is unlikely, levels could be higher in the boy’s other tissues, such as the brain or heart.

Zhang and his team report that physical examination of the boy has included detailed neurological investigation at regular waypoints, including at two weeks, four weeks, two months, three months and four months. All have proved normal, Zhang said, and the boy is still under close monitoring with “a long-term follow-up plan.”

Just what such a long-term plan might look like, however, is uncertain — particularly given that the parents have publicly said that they do not plan to have the boy regularly tested throughout his life to monitor levels of the errant DNA. University of California molecular biologist Patrick O’Farrell, who was not involved in the Zhang study, suggested that this was worrying, given that there could a rising load of mutations as the boy ages.

In this case, a total five eggs underwent the transfer and were fertilized, Zhang and his team reported. The embryo that was ultimately implanted carried about a 5 percent load of the defective DNA, but the researchers did not examine how much defective DNA was carried over in the embryos that were not used.

The remaining fertilized eggs are still available, says Zhang, but he has not tested them to see how much defective DNA each contains. Should the parents decide they’d like to have another baby, Zhang said he would test the others.

Still, without readily accessible data on the transfer of defective DNA in all of the fertilized eggs, O’Farrell argues that important insights are being overlooked. A three-parent baby, he said, offers the rare chance to study the “segregation and transmission of mitochondrial genomes.”

In a telephone interview, Zhang emphasized that analyses are ongoing. “This is new ground, so there are many questions to ask and more studies to come,” Zhang said. “With new tests in new studies, we will continue to learn more.”

For all of the lingering questions, Zhang’s groundbreaking research has sparked a flurry of similar research elsewhere. The editors of the journal carrying his new report credit Zhang with helping to nudge “cautious use” of mitochondrial replacement therapy in the U.K. Meanwhile, the fertility specialist Valery Zukin has used the three-parent technique in the Ukraine to help two infertile women who suffer from a syndrome known as embryo arrest, where their fertilized eggs stop growing before they can be implanted in the uterus.

Both women gave birth to apparently healthy babies this year.

Such news will surely be welcomed by desperate parents looking for new ways to conceive, but experts like O’Farrell continue to worry that the procedure is being deployed too quickly, and with too many question unanswered.

“I feel like extending this work into infertility cases is dangerous,” O’Farrell says. “For every gene that compromises fertility, we need to know whether it also is going to affect later aspects of development.

“If you only rescue fertility,” he adds, “the other defects that gene might cause will still be there.”

Jill Neimark is an award-winning science journalist and an author of adult and children’s books. Her most recent book is The Hugging Tree: A Story About Resilience.

A version of this articleoriginally appeared at Undark, a digital science magazine published by the Knight Science Journalism Fellowship Program at MIT.

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FDA Approves Marketing Of Consumer Genetic Tests For Some Conditions

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23andMe is now allowed to market tests that assess genetic risks for 10 health conditions, including Parkinson’s and late-onset Alzheimer’s diseases.

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The U.S. Food and Drug Administration approved 23andMe’s personal genetic test for some diseases on Thursday, including Alzheimer’s, Parkinson’s and celiac diseases.

The tests assess genetic risk for the conditions but don’t diagnose them, the FDA says. The agency urges consumers to use their results to “help to make decisions about lifestyle choices or to inform discussions with a health care professional,” according to a press release about the decision.

Jeffrey Shuren, the director of the FDA’s Center for Devices and Radiological Health, wrote, “it is important that people understand that genetic risk is just one piece of the bigger puzzle, it does not mean they will or won’t ultimately develop a disease.” Other known factors that can play into the development of disease include diet, environment and tobacco use.

The FDA has previously scolded the company for marketing the personal genetic testing kits without the agency’s consent. In 2013, the agency told 23andMe to stop selling its personal genome kits in the United States until they gained FDA approval by proving they were accurate.

The company agreed to work with the FDA, as we reported, and a recent FDA review of peer-reviewed studies found more consistent links between certain gene variants and 10 diseases, the FDA says.

As a result, the FDA is now allowing 23andMe to market tests that assess genetic risks for the following 10 diseases or conditions:

The company’s $199 Health and Ancestry test is available directly to consumers, without seeing a physician or genetic counselor. Consumers’ DNA is extracted from a saliva sample. After mailing in their sample, people can see their results online.

“This is an important moment for people who want to know their genetic health risks and be more proactive about their health,” said Anne Wojcicki, the CEO and co-founder of 23andMe, in a company press release.

Sharon Terry, the CEO of the Genetic Alliance, a nonprofit organization that advocates for health care for people with genetic disorders, likens it to another consumer test. “Women learn they are pregnant using a test directly marketed to them and buy it off the shelf in a drugstore,” she told NPR. “In 10 years we will marvel that this is an ‘advance’ at all. Imagine pregnancy tests being only available through a doctor!”

Robert Green, a professor of medicine at Harvard Medical School, says people should be able to access genetic information in whatever way is best for them. “Some people really want this [genetic] information on their own, and others want it through their physician,” he said. “Both those channels are legitimate. People should just be aware that this information is complicated.”

But some are stillconcerned about whether the genes in question actually correspond to a higher risk of disease reliably enough to warrant direct-to-consumer marketing and testing, as opposed to genetic testing with the guidance of a professional.

Somehealth professionals worry that consumers will “take the results and run,” as Mary Freivogel put it. Freivogel, a certified genetic counselor and the president of the National Society of Genetic Counselors, added that genetics are just “one piece to the story when it comes to developing a disease.”

Freivogel said speaking with a genetic counselor before getting tested for disease is important. “Direct-to-consumer testing takes away a pre-test conversation,” she said, where counselors can help patients think about questions like: “What do you want to know? What are you going to do with this information? Is it something you’re prepared to know, or is it going to just make you anxious?”

And it isn’t clear what consumers should do with their newly calculated disease risk, especially for conditions like Alzheimer’s for which there isn’t a cure or even a course of action to prevent the disease.

What’s more, having the genes is not the same as having the diseases the genes are associated with. A person may have genes that are associated with Alzheimer’s, for example, but that doesn’t mean he or she will ever get the disease. Conversely, some people develop Alzheimer’s without the identified risk genes.

The Alzheimer’s Association does not recommend routine genetic testing for the disease in the general population because it can’t “productively guide medical treatment.”

A genetic test result for Alzheimer’s is “not going to provide useful information even if you’re at an increased risk,” said Keith Fargo, director of scientific programs at the Alzheimer’s Association. “It’s not like there’s a drug you can take right now [to prevent the disease] or a lifestyle change you can make that you shouldn’t make anyway,” such as exercising and eating right to keep your brain healthy.

John Lehr, the CEO of the Parkinson’s Foundation, says personal genetic tests can help identify risk for Parkinson’s disease. But, he wrote in a statement following the FDA’s announcement, the foundation recommends “that people who are interested in testing first seek guidance from their doctors and from genetic counselors to understand what the process may mean for them and their families.”

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Fentanyl Adds A New Terror For People Abusing Opioids

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Allyson and Eddie, clients at the AAC Needle Exchange and Overdose Prevention Program in Cambridge, Mass., say they carry naloxone and try to never use drugs alone to reduce the risk of overdosing.

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Robin Lubbock for WBUR

There’s a clear culprit in the rising drug overdose death count in Massachusetts, but it’s not heroin. It’s the synthetic opioid fentanyl.

Seventy-five percent of the state’s men and women who died after an unintentional overdose last year had fentanyl in their system, up from 57 percent in 2015. It’s a pattern cities and towns are seeing across the state and across the country, particularly in New England and the Rust Belt states.

Fentanyl may be especially lethal because it’s strong, it’s mixed with other drugs in varying amounts unknown to the user, and it can trigger an overdose within seconds. “It happens so fast, like instantly, as soon as you do the shot,” says Allyson, a 37-year-old woman who started using heroin in her late teens.

“In the past, it [an overdose] was something that you saw happening, like, you could see the person start to slow down, their color would start to turn blue, and then they would go out, within 10 minutes or so,” Allyson says. With fentanyl, there’s no progression. “Now it’s instant,” she says.

Allyson leans back in a chair at the AAC Needle Exchange in Cambridge, Mass., and tugs the hood of her gray sweatshirt down to her eyes. We’ve agreed not to use her full name or the full names of any people in this story who buy illegal drugs, so as not to harm their future job prospects.

Allyson is a regular client at the needle exchange, where manager Meghan Hynes urges everyone to carry naloxone, the drug that reverses an overdose. Hynes uses her own kit every few weeks.

“Recently we had a guy leave the bathroom and all the color just drained from his face, like immediately, and he just turned blue,” Hynes says, describing what’s become a typical fentanyl overdose. “I’ve never seen anyone turn blue that fast. He was completely blue and he just fell down and was out — not breathing.”

Hynes bent over the man turning blue to pump his heart, but she couldn’t. He was hit with “wooden chest,” a side effect of fentanyl that may be increasing the death toll.

“Your chest seizes up. You literally have paralysis and that’s obviously really dangerous, because if someone needs CPR, you can’t do it,” Hynes says. “And in this situation it spread, so he had lockjaw and his mouth was only open a tiny, tiny bit. And so I could hardly even do rescue breathing for him.”

Breathing for overdose patients is critical because brain cells can die after just five minutes without oxygen. Hynes revived the man on the floor. Because of the increasing overdoses she sees with fentanyl in the mix, she urges clients to stick to a dealer they know, and use with a buddy.

Many drug users also inject a small amount before they give themselves the full shot.

“But it’s really hard to tell these days, even if you do a tester shot,” Allyson says, because the grains of fentanyl that could kill you aren’t mixed uniformly in a bag. That’s a lesson she learned one death-defying night a few months ago.

Allyson, who is homeless, spent the night in a tent with a friend. She woke up and used the last of a bag from the day before to get herself going.

“And I actually said to my friend, I said, ‘Wow, I can’t believe I only saved myself this much.’ It was a very small amount, like a third of what I did the night before,” Allyson says, shaking her head. “I overdosed on it.”

The friend had enough naloxone in the tent, which was far from a road or hospital, to bring Allyson back from the dead.

Fentanyl is an opioid 50 times more powerful than heroin. There’s a legal, Food and Drug Administration-approved version. But labs in China are churning out cheap versions of fentanyl that dealers are selling on the streets mixed with fillers, heroin or other drugs.

Buyers have no idea how much fentanyl they are getting or how much risk they are taking with every injection. So, these days, drug users who frequent this needle exchange assume there’s fentanyl in every bag they buy.

“Most of us know that that’s what we’re getting,” says Sean, who started using heroin more than 20 years ago. “And if you don’t believe it, you’re living in a fairy tale world.”

There’s no reliable way for drug users to test the contents of bags bought on the street. Eddie relies on taste.

“It’s slightly bitter, but it’s mainly sweet if it’s fentanyl. If it’s heroin, you can tell right away because it’s got a bitter taste and it’s a long-lasting aftertaste,” Eddie says. “I will not put anything in my arm before I taste it.”

Eddie and Allyson say they try to avoid fentanyl. But when their last dose of drugs starts to wear off, they’ll take anything to avoid withdrawal, which they describe as the flu on steroids with fever, vomiting, diarrhea and high anxiety.

“It literally feels like your skin is crawling off. You’re sweating profusely,” Allyson says. “Your nose is running, your eyes are running. And that’s all you can focus on. You can’t think.”

Some drug users seek fentanyl because it’s a more immediate rush and intense high. But Allyson doesn’t like it. She says a fentanyl high fades much more quickly than heroin’s, which means she has to find more money to buy more drugs and inject more often, which leads to more risk.

When fentanyl fades, she and Eddie say, they are more likely to take other drugs. “You’re getting a fast rush but it doesn’t last, so people are mixing,” Allyson says.

At 37, Allyson is having experiences most Americans don’t face until much later in life. “As of two days ago, 30 people that I know have passed away. Basically my entire generation is gone in one year,” Allyson says. “It’s the fentanyl, definitely the fentanyl.”

Older drug users who have been through other epidemics say this moment with fentanyl is the worst they’ve seen. A man named Shug twists a towel in his hands.

“Addicts are dying, like, every day. It’s crazy, man,” Shug says, his eyes filling with tears. “Nobody seems to give a damn.”

Shug is grateful for the needle exchange, which hasn’t lost anyone to an overdose. But on the streets outside, the death toll keeps rising.

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

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Pulse Check: Can The GOP Health Care Bill Be Saved?

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Vice President Pence is leading talks with House Republicans for the Trump administration to try to revive the failed health care bill.

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President Trump may have said he is ready to move on, but the House Freedom Caucus can’t let health care go.

The same firebrand conservatives who helped derail the GOP’s long-awaited legislation to repeal and replace key parts of the Affordable Care Act are now trying to breathe new life into the bill with a long shot effort to bring it back for a vote in May.

Or at least keep it on life support through the two-week April recess when they’ll otherwise have to explain the bill’s derailment back home. “We’re on the eve of going home and spending two weeks with our constituents … and they know they’re going to get questions about this,” said Rep. Steve Womack, R-Ark. “And for the people who were ‘no’ they’ll have justification to deal with.”

Womack, who was a “yes” on the GOP’s American Health Care Act, said despite encouraging talk from some corners of the House, a revival was not in sight.

“I did not get the message from our conference this morning that we’re nearing the finish on health care,” he said. “It’s obvious those negotiations continue to take place — and there might be some movement in some areas that give leadership some hope we can get closer to the finish line — but I’m not suggesting at all that we are right there and this thing could change on a dime.”

The 30-some members of the conservative House Freedom Caucus, led by Rep. Mark Meadows, R-N.C., are in active talks with the administration — in the aftermath of a skirmish between some of the group’s members and Trump over the failure of the health care bill. Those talks are being led by Vice President Pence, who spent Monday and Tuesday in the Capitol huddling with different factions of House Republicans.

According to lawmakers and aides briefed on the negotiations, conservatives are talking with the White House about tweaking AHCA to allow states to seek waivers of Obamacare’s requirements for “essential health benefits,” or basic health care services all insurance plans must offer, as well as restrictions on “community ratings,” or how much insurers can charge for premiums based on age and gender.

Originally, conservatives wanted to repeal those aspects of the law entirely to allow for health plans with lower premiums. Now there are talks about keeping them in place but allowing states to appeal to the Department of Health and Human Services to waive them on a state-by-state basis.

It’s far less than conservatives had hoped for in negotiations. “It perhaps is as much of a repeal as we can get done,” conceded Meadows, according to the Associated Press. “That’s the calculation we have to make.”

The talks have not so far publicly brought on board any of the moderate Republicans who already opposed rolling back essential health benefits or who worry that doing so would raise costs on people with pre-existing conditions. The talks also ignore the fact that many of the GOP’s “no” votes were based on the legislation’s sweeping changes to how Medicaid is funded, and the current negotiations don’t address those concerns at all.

It’s also unclear that including the updated proposal into the bill would even secure the votes of enough House Freedom Caucus members to pass it. Rep. Mo Brooks, R-Ala., is still a “no” and said his colleagues should not expect the conservative faction to vote as a bloc.

“For some reason, some in the media think that we vote lockstep with each other. That is categorically not the case. If you were to think of us more as an intellectual conservative think tank with a backbone, that’s what we are,” Brooks told reporters.

House Speaker Paul Ryan, R-Wis., spoke cautiously of the effort, describing talks as in “the conceptual stage” and saying that any action before the April recess was highly unlikely. “We want to make sure that when we go, we have the votes to pass this bill,” he said.

White House spokesman Sean Spicer was similarly cautious. “I’m not going to raise expectations, but I think that there are more and more people coming to the table with more and more ideas about how to grow that vote.”

The House is operating under a tight timeline. Republicans on all sides of this debate agree that May is a make-or-break deadline for the bill because of budgetary constraints. The health care bill is moving under a process protected by this year’s budget resolution. Once Congress begins moving on next year’s resolution, the budget protections for their health care bill expire.

Even if the House can muscle up the votes to revive the bill next month, it still must clear the Senate, which is expected to make significant changes to the House bill, and then the House would have to pass it again.

Politically, most Republicans say they do not want to drag out the health care debate longer than they have to if it’s clear it can’t pass. The only thing worse than failing once to deliver on a central campaign promise is failing twice.

“Let me just tell you what we can’t do — we can’t try again and fail,” Womack said. “So there will not be a try-again effort unless it is certain that we have the votes to pass it.”

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With Obamacare Here to Stay, Some States Revive Medicaid Expansion

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Kansas Gov. Sam Brownback opposes legislative efforts to expand the state’s Medicaid program.

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Kansas state Sen. Barbara Bollier is a Republican who has been fighting for years to get her colleagues to agree to expand Medicaid.

For years she pushed against what she described as a “Tea Party-ish” Senate and a governor who wouldn’t consider the issue. In return for her efforts, she was stripped of her committee assignments and sidelined.

But in last November’s election, the makeup of the Kansas legislature moved decidedly to the center. And last week, the state’s Senate joined the House in agreeing to expand eligibility for Medicaid, the government health program for the poor, to about 150,000 more Kansans.

“This has been a long time and a hard road,” Bollier said in an interview shortly after the vote.

The vote had reverberations back in Washington, D.C., because it came just days after Republicans in the U.S. House of Representatives failed in their effort to repeal the Affordable Care Act, also known as Obamacare. That failure breathed new life into efforts in the states expand Medicaid as the law allows.

In all, 31 states and the District of Columbia have expanded Medicaid after the Affordable Care Act passed in 2010. The majority acted so that the expansion went into effect in 2014. A handful of states, including Louisiana and Montana, that first rejected the expansion have since embraced it.

But those efforts face the same political and ideological fights that have plagued health care policy in Washington,

You could hear the echoes in Topeka last week.

State Sen. Ty Masterson, a Republican, urged his colleagues to reject expanding Medicaid because it was part of the Affordable Care Act. He likened the federal health law to a broken amusement park ride.

“We’re standing at an amusement park ride that’s closed. It’s broken. And we’re saying we want to go ahead and get on the ride,” Masterson said. “There is a reason there is nobody in line behind us. Sign’s up: ‘Out of Order.’ I don’t want to be first in that line. I want to get out of that line.”

But Bollier says the Affordable Care Act is here to stay, and that makes taking federal money to expand health care to the poor, which has overwhelming support in the public, a no-brainer.

“I’ve never had anything like that in the legislature,” she said. “It was just overwhelming support. Not just support; begging, pleading, ‘Please, we desperately need this in place.’ “

Bollier is a doctor, the daughter of a doctor and a nurse. She says getting health care to the working poor shouldn’t be a partisan issue.

“I have yet to meet a patient who comes in and says, ‘I’m a Republican,’ or ‘I’m Democrat, so mete out my care accordingly,’ ” she said.

The law allows states to offer Medicaid coverage to people with incomes up to 138 percent of the federal poverty level, or about $16,400 for a single adult. It also extended eligibility to “able-bodied” adults with no children for the first time.

But Kansas Gov. Sam Brownback didn’t see it that way. On Thursday, he vetoed the bill.

“It fails to serve the truly vulnerable before the able-bodied, lacks work requirements to help able-bodied Kansans escape poverty, and burdens the state budget with unrestrainable entitlement costs,” he said in a statement. Brownback said he also opposed it because it allowed government money to go the what he called “the abortion industry.”

Bollier calls the governor’s’ arguments “disingenuous.”

“He keeps claiming we just can’t afford this,” she says. “You afford what you choose. Where you place your money is a reflection of your value system.”

Now Bollier and other proponents are working furiously to change just two of their colleagues’ minds in hopes of overriding that veto — perhaps as soon as Monday.

About 1,200 miles due east from the fight in Topeka is Richmond, Va.

When it comes to Medicaid expansion, the two capital cities are mirror images.

Virginia Gov. Terry McAuliffe is a Democrat pushing his Republican legislature to expand Medicaid.

“I have had more excuses out of our Republican general assembly, none of them correct,” McAuliffe tells Shots. “The most recent argument was this was going to be repealed. Well, now it’s not. It’s not going away.”

McAuliffe says about 400,000 Virginians could be eligible for Medicaid under an expansion. And the Federal government would send $2.4 billion a year to the state to cover the costs.

But the legislature in Richmond isn’t buying it.

In a statement, Virginia’s Republicans said they’re still against the proposal.

“The House Republican majority remains strongly opposed to implementing ObamaCare’s Medicaid expansion in Virginia,” the statement said. “Virginia can barely afford our current program, much less an expansion. Every dollar spent on Medicaid is one less that can be spent on education, transportation or public safety.”

McAuliffe says the barrier is political. Among Virginia Republicans, the specter of U.S. House Majority Leader Eric Cantor unexpectedly losing his primary battle two years ago looms large.

“My legislature is terrified of the Tea Party,” McAuliffe says. “That’s the only reason they’re not voting for it. Because they’re afraid they’ll get taken out in the primary, plain and simple.”

So in Virginia, expanding Medicaid remains a long shot.

But up north, in Augusta, Maine, lawmakers have handed the question to the people after that state’s governor vetoed measures passed by the legislature five different times.

Tom Saviello is that state’s representative for Franklin County, a poor rural district where many people have no health care coverage.

Expanding Medicaid would make people healthier, bring in federal money and help the local hospital that’s struggling to care for all the people who can’t pay, he says.

“To me it was a no-brainer, absolutely a no-brainer,” says Saviello, a Republican, in an interview.

He sponsored bills to expand Medicaid in the past that were vetoed by Republican Gov. Paul LePage. Then on Election Day, a citizens group collected enough signatures — 67,000 — in a single day to put the question to a referendum. Saviello says he withdrew his latest bill in order to let the public decide.

“Because we have the citizens’ petition, we’re putting it in the citizens’ hands,” he says.

Polls show that 60 percent of Mainers want to expand Medicaid, Saviello says.

So come November, he predicts: “It’s going to happen. It’s coming.”

James McLean from member station KCUR in Kansas City, Mo., contributed to this report.

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In Wyoming, One Insurer Offers Plan On State Exchange

NPR’s Ari Shapiro talks with Tom Glause, the commissioner of the Wyoming Department of Insurance, about how the Affordable Care Act has worked in the state and what can still be improved.

ARI SHAPIRO, HOST:

The Republican plan to repeal and replace the Affordable Care Act has failed for now, and we’ve been looking at how Obamacare, as it’s known, is doing in different states. Yesterday we heard from California, a state where consumers have options and the marketplace seems to be thriving. But as the president has pointed out, that’s not true everywhere.

(SOUNDBITE OF ARCHIVED RECORDING)

PRESIDENT DONALD TRUMP: Many Americans lost their plans and doctors altogether. And one-third of the counties – think of it – one-third only have one insurer left. I mean the insurance companies are fleeing. They’re gone, so many gone.

SHAPIRO: In fact, at least five whole states have just one insurer offering plans on the state exchange. One of those is Wyoming. Tom Glause is the commissioner of the Wyoming Department of Insurance. He says there are a lot of reasons why things are different in his state.

TOM GLAUSE: First of all, we do not have that population to attract a lot of people to the exchange. I think that it’s also – as a rural state, our citizens do not like being told what they have to purchase. We are a frontier state, and that doesn’t sit well with a lot of our people. The other problems that we’ve experienced is the cost. The cost of insurance on the exchange is high. The deductibles are high.

SHAPIRO: And so do you think this is a law that was designed for densely populated states that could just never work in a state like Wyoming, or do you think there are things that could attract more insurers to the marketplace?

GLAUSE: There are certainly things that can attract more insurers to the marketplace. Right now the uncertainty makes it nearly impossible.

SHAPIRO: You mean uncertainty about the future of the law, whether it’ll remain intact, be repealed and replaced, or just collapse on itself or what.

GLAUSE: The uncertainty surrounding all of it right now – whether the administration will continue to appeal the decision in the House versus Burwell suit regarding cost-sharing reductions. The insurance companies don’t know right now, and insurance companies do not react well to uncertainty.

SHAPIRO: Yesterday when we spoke to an insurance official in California, he told us that one of the big reasons for the success in his state is advertising and other programs that the state put in place to get people to enroll which keeps costs down, which keeps more insurers in the marketplace. Do you think Wyoming has done all it could in that respect?

GLAUSE: I read that with interest that he had stated that California spent $100 million in advertising. Interestingly, $100 million would fund all of the subsidies or the advance premium tax credits that the Wyoming consumers received for a year. However, I don’t think that was a shortfall in Wyoming. Enroll Wyoming was very well-positioned to advertise and get the word out regarding the marketplace and the ACA.

SHAPIRO: Do you think any national plan can fit both the demographics of Wyoming and the demographics of a state like California? Or in your opinion, would a state-by-state approach be better?

GLAUSE: Whatever we wind up with, I think it’s going to have to have a state-by-state approach. What works in California probably will not work in Wyoming. They’ve got 30 million people compared to our low population of 600,000.

SHAPIRO: What would you like to see from leaders in Washington right now?

GLAUSE: I would like to see them attack the root of the problem, and that is the delivery of health care services in the United States. We’re trying to do this through insurance, and that will have limited success until we actually attack the problem head-on.

SHAPIRO: Tom Glause is Wyoming’s insurance commissioner. Thank you for joining us.

GLAUSE: Thank you very much for inviting me, Ari, and the interest you have shown in Wyoming.

(SOUNDBITE OF KENDRICK LAMAR SONG, “HUMBLE”)

Copyright © 2017 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

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Why The Newly Proposed Sepsis Treatment Needs More Study

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A well-regarded intensive care doctor in Virginia says he has had good success in treating 150 sepsis patients with a mix of IV corticosteroids, vitamin C and vitamin B, along with careful management of fluids. Other doctors want more proof — the sort that comes only via more rigorous tests.

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The astronomer Carl Sagan said that extraordinary claims require extraordinary evidence. Last week, a physician made the extraordinary claim that he had an effective treatment for sepsis, sometimes known as blood poisoning.

Sepsis is a bodywide inflammation, usually triggered by infection, and the leading cause of death in hospitals, taking 300,000 lives a year. So, even a 15 percent improvement in survival would save 40,000 lives — the number of Americans who die on the highway each year, or from breast cancer.

Dr. Paul Marik, a well-regarded intensive care physician at the Eastern Virginia Medical School in Norfolk, Va., is the doctor with the extraordinary claim. As we reported last week, he says he has treated about 150 patients with sepsis and that only one died of that often fatal condition (though some died of other causes).

The question is how to find out whether he is right — and, ideally, how to do that quickly.

Marik’s treatment involves a mix of intravenous corticosteroids, vitamin C and vitamin B, along with careful management of fluids. And his experience, so far, falls far short of the “extraordinary evidence” that a claim like his requires.

The first step in getting more evidence is to confront an appropriate skepticism that has grown up around purported treatments for sepsis.

“Nothing has worked despite all the great ideas people have had, often ballyhooed with observational data like this, claiming that it’s a big effect,” says Dr. Robert Califf, who recently returned to Duke University after running the U.S. Food and Drug Administration.

“So, I’d say the odds are still that it doesn’t work,” Califf says, “but every once in a while something works in an unexpected way.”

He wants to see solid evidence. In the world of medicine, that’s a randomized controlled trial, in which patients are randomly assigned to get the experimental treatment or the standard of care, and neither patients nor medical personnel know who is getting what. An experiment like this should also be run at multiple hospitals.

Considering how big an effect Marik is reporting, “it would take a very small study, done by people independent of him, to prove it,” Califf says. “And then the whole world would benefit,” whatever the results may be.

But these trials don’t happen overnight. There’s no new drug to test, so pharmaceutical companies aren’t interested. The National Institutes of Health, which funds many of these studies, would welcome a research proposal, says Sarah Dunsmore at NIGMS. But the experiment must be designed and approved by researchers first, she says, and then it would likely go into the standard nine-month review process, where it would compete for scarce funds with other research proposals.

Califf just started a nonprofit called the People-Centered Clinical Research Foundation and says this is potentially a project the foundation could fund. Likewise the Society for Critical Care Medicine is interested in sponsoring a study to follow up on the research, says Dr. Craig Coopersmith, an Emory University professor of surgery and associate director of the medical school’s critical care center.

Even so, under the best-case scenario, results wouldn’t be available from a randomized controlled trial for about two years.

Some doctors aren’t waiting. Dr. David Carlbom, medical director of the sepsis program at Harborview Medical Center in Seattle, heard Marik give a talk about his protocol and decided to offer it to his sepsis patients.

“Because of the potential benefit and I think very few harms, I talk to families when I’m caring for a septic shock patient and discuss this with them and get their consent when trying this therapy,” he says. (Septic shock is a particularly severe form of sepsis.)

Carlbom’s impressions, after just five patients, are strictly impressionistic, not scientific, but he says some patients seem to haveresponded well.

“I don’t know if it’s the medicine; maybe it’s just us taking good care of them,” he says. “Maybe it’s them and their disease. But I was a little surprised. They did seem to heal faster from their septic shock.”

Carlbom says he is an early adopter. Other doctors who work in his hospital’s intensive care unit are taking a “wait and see” approach. Of course, Carlbom is eager for scientific evidence as well.

Dr. Mark Rumbak, a pulmonologist at the University of South Florida in Tampa, is also trying the protocol. Marik is an old friend, Rumbak says, so he heard about Marik’s treatment months ago. So far, Rumbak has tried it on at least 30 patients, and most have done well, he says.

“Not only do they do better; they do better quickly,” he says. “Within 24 to 48 hours you see the patients responding. It’s actually quite nice, it’s quite dramatic.”

Some of the skepticism around this treatment has arisen because it includes vitamin Cwhich has been hailed repeatedly for its curative powers, though those claims have rarely been backed by solid science.

In this case, Rumbak suspects that vitamin C is making the body more receptive to another part of the treatment — corticosteroids — which are well-established drugs.

Dr. Berry Fowler, head of pulmonary disease at Virginia Commonwealth University’s school of medicine, inspired Marik to use vitamin C in his hospital. Marik had heard about Fowler’s experiments with IV vitamin C for sepsis and so started his own protocol with the mix of vitamins and steroids.

Fowler is now running a controlled trial of vitamin C for sepsis, but his study does not include the corticosteroids or the vitamin B, which are part of the Marik protocol.

Part of the challenge is that there is no agreed-upon treatment for sepsis. Doctors have different beliefs about how much fluid to give patients, which kinds of fluids to give, which kinds of antibiotics and whether to administer corticosteroids. So there is no established “standard care” to use as a clear point of comparison.

Dr. Gordon Bernard, a pulmonary medicine and critical care specialist at the Vanderbilt University Medical Center, who has been studying sepsis for 30 years, is firmly in the skeptics’ camp on this potential treatment.

Bernard says wishful thinking might have led Marik to conclude that only one out of 150 of his patientshas died of sepsis.

“You could spend all day long adjudicating some of these cases, as to whether these people died of sepsis or something else,” Bernard says. That question would get careful scrutiny in a randomized study.

Yet scientists know there’s also a danger in being too skeptical of extraordinary claims, because sometimes they do turn out to be true.

In 1982, two scientists in Australia concluded that stomach ulcers are caused by a bacterium and could be treated successfully with antibiotics. It took well over a decade for doctors to believe it and start using that effective treatment.

“We always have to be aware that every now and then something works,” Califf says. “And we don’t want to miss that opportunity.”

You can contact Richard Harris at rharris@npr.org.

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Missouri Rejects Federal Money In Order To Set Up Its Own Abortion Restrictions

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Robin Utz at her home in St. Louis, Mo.

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A new Missouri law cuts off a line of funding to all organizations that provide abortions in the state, including hospitals.

For years, Missouri has helped low-income women pay for family planning under a Medicaid program called Extended Women’s Health Services, which is funded by both the state and the federal governments.

Federal law already prevents Medicaid from reimbursing providers for most abortions. Missouri’s new measure rejects $8.3 million in federal funds for the women’s health program, allowing the state to block state funds for other family planning services from going to abortion providers.

Other states, including Texas, Arkansas, Mississippi and Indiana, have tried to exclude abortion providers from Medicaid funds before, but courts have said that would violate a federal law that gives patients the right to choose their health care providers. Missouri hopes to get around that by rejecting the federal money. The rule has not been challenged in court.

Missouri’s Medicaid program for women’s health services currently serves nearly 70,000 low-income patients.

To make up for the lost federal funds, the state is increasing its own funding of women’s health services for low-income residents. Under the new measure, Missouri will spend $8.3 million to create its own program in place of the federal program it has opted out of.

Implications For Health Providers

Under the new measure, the St. Louis hospital where Robin Utz had an abortion may no longer be eligible for state funds for women’s health services.

When she and her husband went in for a 20-week ultrasound in the fall of 2016, Utz had finally started to feel confident about the little girl she was carrying.

“Everything was looking fantastic. She was measuring one day ahead. I had a friend that had a home doppler [fetal heart monitor] that she gave me, and I would listen to the baby’s heartbeat, just to hear it,” she remembered. But as the appointment dragged on, the nurse grew quiet, and said she needed to bring in the doctor.

“I don’t know what the diagnosis is, right?” Utz said as she brushed away tears months later. “I just know that it’s not good.”

Their daughter had developed a fatal complication.

“Her kidneys weren’t working, and there was, therefore, no amniotic fluid and without amniotic fluid she would never develop lungs,” said Utz. “And I asked what her chances were and they said there weren’t any.”

Utz and her husband had just a few hours to make a decision about whether to terminate the pregnancy, or wait until she gave birth. Doctors warned her that the baby would likely be stillborn.

“We just felt so strongly that allowing her to be born, to immediately suffer, and to go through the trauma of childbirth, not to be able to be held by us necessarily, but to go into a [neonatal intensive care unit] and be held alive just to die was so inhumane,” she said.

Utz terminated her pregnancy at Barnes-Jewish Hospital in St. Louis. Generally, abortions done in hospitals are higher risk, for example when a mother’s life is in danger, or there is a severe fetal anomaly.

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Under a new rule, hospitals in Missouri, including the Barnes-Jewish Hospital in St. Louis, may no longer be eligible for state funds for providing women’s health services to low-income patients.

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The services at Barnes-Jewish Hospital will not change under Missouri’s new rule, a spokesperson said. But other organizations may not continue to provide abortions under the new funding restrictions.

The state government has sent about five hundred letters to hospitals, obstetricians, gynecologists and clinics with the qualifications to perform abortions. It includes a form that requires providers to attest that they do not provide abortions.

So far, more than 300 providers have signed the form, and will continue to get state funds, according to the Missouri Department of Social Services. Those who do not sign it will no longer be eligible for state funds for women’s health services.

The rule, which was passed as part of last year’s state budget, does appear to include an exception for organizations that provide abortions to save the mother’s life.

But that language is restricted to the budget’s preamble, and hospitals say the language is still unclear. As a result, Missouri’s hospital association is counseling its members not to bill the state program for any family planning services if they provide abortions, including procedures to save the life of the mother, or cases of rape or incest.

A National Trend

Like similar measures curbing funding to abortion providers in other states, Missouri’s measure was originally introduced in the wake of videos purporting to show the sale of fetal tissue by Planned Parenthood employees in Texas.

As we have reported, a grand jury found no evidence of wrongdoing by Planned Parenthood and instead indicted two people who recorded the videos for tampering with a government record and illegally offering to purchase human organs. The indictments were later dismissed on technical grounds.

After the videos were released, Missouri Rep. Robert Ross moved to cut all funding to organizations in the state that provided abortions.

“Simple amendment,” he said on the floor of the Missouri House of Representatives in March 2016. “This stops your tax dollars from being used to fund abortions.”

Several Missouri House Democrats questioned Ross, including Rep. Michael Butler of St. Louis, with whom he had the following exchange:

Butler: “Answer this for me. If women have complications through pregnancy, and they don’t have a primary doctor, where do they go?”

Ross: “Gentleman, it’s really simple. You agree with my amendment, you’re going to vote for it, or you don’t agree, you’re going to vote against it.”

The measure passed. Ross has not returned requests for comment.

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

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Through Regulation, Trump Could Dismantle Parts Of Obamacare

NPR’s Ari Shapiro talks with Sarah Kliff of Vox about how Health and Human Services Secretary Tom Price could dismantle parts of the Affordable Care Act through regulations.

ARI SHAPIRO, HOST:

Now that the Republican health care bill is dead, President Trump says his plan is to let Obamacare explode. There are lots of ways his administration can chip away at the Affordable Care Act, which is the official name for Obamacare.

Sarah Kliff covers health policy for vox.com. And she has made a list of things the administration could do by itself to undermine the system.

Welcome to the program.

SARAH KLIFF: Thanks for having me.

SHAPIRO: First, is the Affordable Care Act already exploding, or does it require Republicans taking steps to make the system fail?

KLIFF: I don’t think it’s exploding. It’s not performing as well as Democrats would like. It certainly has its problems. But it is working. It’s covering about 20 million people. But there are certainly policy decisions the Trump administration will need to make that will really determine if it goes into explosion mode like Trump is predicting.

SHAPIRO: You’ve listed more than a dozen policy decisions the administration can or will have to make. In your opinion, what would be the single most consequential one that could undermine the Affordable Care Act?

KLIFF: So right now there is this lawsuit pending over Obamacare’s cost-sharing reductions. These are payment to insurance companies to offset the co-pays and deductibles for especially low-income Obamacare enrollees. The…

SHAPIRO: You’re talking about people who don’t make a lot of money, who get coverage under the insurance exchanges, get basically underwritten by the government.

KLIFF: Exactly. So these are people who earn maybe $20,000 or so a year. And if the co-pay is normally $10, they might pay a $3 co-pay because the government is paying the other $7.

There is a lawsuit right now brought by House Republicans saying that these cost-sharing reductions are illegal. The biggest thing the Trump administration could do right now to undermine the Affordable Care Act is just stop defending the lawsuit, to say, we agree with House Republicans; they’re illegal. And that would wipe out a $7 billion fund that provides these cost-sharing reductions to low-income Americans.

SHAPIRO: You write that the Trump administration could stop enforcing the individual mandate, the requirement that everybody have health insurance. Didn’t President Trump sign an executive order basically saying this when he first took office?

KLIFF: Not exactly. So he did sign an executive order that told the whole Trump administration to get rid of whatever regulations, whatever mandates you can. Just try and cut them out.

The hard thing about the individual mandate is it’s part of the Affordable Care Act. You can’t really get rid of it entirely through regulation. But what the Trump administration can do is essentially change the rules around the individual mandate.

They could say, the fine seems to be too onerous, so we are going to scale it back this year, or we’re going to create more exemptions from the mandates so fewer people have to pay.

So they do want to get rid of the mandate. But what they need to do next if they’re going to do that is write the rules around the mandate and essentially clarify if they’re going to enforce it or not.

SHAPIRO: Also on this list of ways the Trump administration could undermine the Affordable Care Act, there has been a lot of debate about essential health benefits. Those are 10 categories of services that insurers must cover under the Affordable Care Act, like maternity or pediatric care. What would it look like if the Trump administration decided to narrow the definition of these services?

KLIFF: So you would have much skimpier health insurance plans. Things like you mentioned, Ari, maternity care, for example, used to not be covered in most individual market plans. The Trump administration is a little bit restricted on how much it can do on the essential health benefits here. They’re actually written into law. So in the Affordable Care Act, it says that all insurance plans must cover maternity care, these other sets of 9 benefits.

But we’re waiting to see right now, do they think there are things they can do through regulation to narrow that down or narrow down within maternity care – for example, what counts as covering maternity care? – or turn more of a blind eye towards health insurance plans that aren’t covering those benefits.

SHAPIRO: Can you give us an example of, for example, if they scaled back maternity care, what that might look like?

KLIFF: Yeah, so they might take out, like, certain prenatal benefits, for example. Or they might try and target certain services related to breastfeeding after birth. So right now we don’t really know. We haven’t seen a proposal from the Trump administration.

But what they could do is say that fewer services count as coverage, essentially, to say, you know, as long as you’re covering the actual delivery, that counts as maternity care. And we won’t make you cover all the rest of the things associated with the pregnancy.

SHAPIRO: If we imagine the Trump administration doing everything within its power to undermine the Affordable Care Act, how significant will the likely impact be? Could the administration basically make Obamacare fail by implementing all these changes?

KLIFF: I think so. If they put them all together, if we take together, for example, not defending the cost-sharing subsidies, not advertising the marketplaces, scaling back the essential health benefits however they can through regulation, not trying to get more insurers into the market, I think you would definitely see some marketplaces collapse.

One of the things that’s important to remember about Obamacare is it really varies a lot state by state. You have states like California that has a very active board running its marketplace. They’ll be fine. They will make this work because they want to make it work. But you have big, rural states, like Alaska and Tennessee and a lot of states in the South, that could teeter into collapse if you make the policy decisions that are generally going to decrease enrollment and make insurance companies less excited to be part of the marketplace.

SHAPIRO: Sarah Kliff is senior policy correspondent at Vox. Thanks for joining us.

KLIFF: Thank you.

Copyright © 2017 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

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