Tagged Trump Administration

Best Reads Of The Week With Brianna Labuskes

Happy Friday! Ending a week in which I’ve been wondering if we all have been dropped into the first act of a supervillain movie since the news that the mysterious brain-injury-caused-by-sound has seemingly spread from Cuba into China.

Here’s some other whodunits — health policy thrillers, right? — for this three-day weekend.

Lawmakers were busy: Ahead of Memorial Day, the Senate sent a bill that would overhaul the VA health system and expand the Choice Program to President Donald Trump. While the legislation sailed through the chambers, critics say it’s too drastic a move toward privatized care, a hot-button topic that’s not going anywhere soon (especially with the Koch brothers’ billions behind it). On the other side of the building, the House approved a “right-to-try” bill (… coincidentally also backed by the Koch brothers … ), reviving the measure that had stuttered over the past few months.

• The New York Times: Senate Sends Major Overhaul of Veterans Health Care to Trump

• The Associated Press: Congress OKs Letting Terminal Patients Try Unapproved Drugs


Consider: $685 billion a year. That’s what it costs taxpayers to make health care affordable for Americans, and the price tag is expected to nearly double in the next decade. So, while some Republicans are refusing to touch a fresh attempt at repeal with a 10-foot pole this close to the midterms, others are trying to reclaim the topic that’s clearly going to be at the top of voters’ minds. High premium increases loom large in the next few months as each side races to control the conversation.

• The Wall Street Journal: New Push to Topple Affordable Care Act Looms 

• Bloomberg: It Costs $685 Billion a Year to Subsidize U.S. Health Insurance

And, for what it’s worth, despite Republicans’ attempts to chip away at the health law, the uninsured rate held pretty steady last year.

• The New York Times: Despite Attacks on Obamacare, the Uninsured Rate Held Steady Last Year


Requiring pharma companies to list their drugs’ prices in ads seems like a simple request. As with most things in the dark and confusing labyrinth that is the drug-cost pipeline, though, it’s a bit more complicated. The proposal, which is part of Trump’s blueprint to lower prices, at first seemed like an idle threat. But HHS Secretary Alex Azar keeps bringing it up. Companies are getting nervous, and are left asking — would the rule even be legal?

• The New York Times: Requiring Prices in Drug Ads: Would It Do Any Good? Is It Even Legal?


Adding work requirements to states’ Medicaid programs may be the hot new trend, but a new report shows that it will cost states and the government tens of millions of dollars. And despite garnering savings in the long-run, that money will come entirely from people losing coverage and access to care. On the flip side of things, red states are getting a serious reality check on just how far they can go with changes to their programs.

• Modern Healthcare: States Face Big Costs, Coverage Losses From Medicaid Work Requirements

• The Hill: Red States Find There’s No Free Pass on Medicaid Changes From Trump


The miscellaneous file is bursting with must-read stories, so it’s lucky there’s an extra day in the weekend to fit them all in: Patients addicted to opioids were promised free rehab but were instead put to work 16 hours a day for no pay at adult care homes changing diapers and dispensing medication; some new mothers in China are being forced to pay their medical bills before they’re allowed to see their babies; depression medication, insulin and birth control are ending up in our rivers and streams from poor wastewater disposal practices; scientists are on tenterhooks as they watch the effectiveness of the new Ebola vaccine play out in real time; and a captivating profile surfaced on a doctor who has been accused of putting his quest to make history ahead of the needs of some patients.

• Reveal: Drug Users Got Exploited. Disabled Patients Got Hurt. One Woman Benefited From It All

• Stat: Pharmaceutical Manufacturing Plants Are Sending Lots of Medicine Into the Water Supply

• The New York Times: Want to See Your Baby? In China, It Can Cost You

• The Washington Post: New Ebola Vaccine Faces Major Test in Congo Outbreak

• ProPublica: A Pioneering Heart Surgeon’s Secret History of Research

And make sure you’re following the L.A. Times’ comprehensive coverage of the controversy at the University of Southern California —

• Los Angeles Times: Students Warned USC About Gynecologist Early in His Career: ‘They Missed an Opportunity to Save a Lot of Other Women’


Have a great holiday weekend, and if you’re planning on soaking up any rays, stick with lotion instead of trying any of those sunscreen pills.

Podcast: KHN’s ‘What The Health?’ Campaign Promises Kept, Plus ‘Nerd Reports’

President Donald Trump managed to fulfill — at least in part — two separate campaign promises this week.

To the delight of anti-abortion groups, the administration issued proposed rules that would make it difficult if not impossible for Planned Parenthood to continue to participate in Title X, the federal family-planning program. And Congress cleared for Trump’s signature a “right-to-try” bill aimed at making it easier for patients with terminal illnesses to obtain experimental medications.

Also this week, the National Center for Health Statistics and the Congressional Budget Office issued reports about Americans both with and without health insurance and the cost of subsidizing health insurance to the federal government.

And May’s “Bill of the Month” installment features some very expensive orthopedic screws.

This week’s panelists for KHN’s “What the Health?” are Julie Rovner of Kaiser Health News, Margot Sanger-Katz of The New York Times, Sarah Kliff of Politico and Alice Ollstein of Talking Points Memo.

Among the takeaways from this week’s podcast:

  • The Trump administration’s proposed rule to cut Title X reproductive health funding for groups that perform abortions was designed to meet demands from the president’s religious supporters, but it could backfire by mobilizing liberal voters.
  • The changes being considered might also open the door for some religious-based groups that don’t support abortion — or perhaps even contraception — to get federal Title X funding.
  • Conservatives’ campaign to get a “right-to-try” bill through Congress has been driven in large part by individual patient stories.
  • New data released by the Centers for Disease Control and Prevention this week shows the uninsured rate did not grow in 2017, despite a number of changes that the Trump administration made to the marketplace and federal promotion of it.

Plus, for “extra credit,” the panelists recommend their favorite health stories of the week they think you should read, too.

Julie Rovner: Kaiser Health News’ “When Is Insurance Not Really Insurance? When You Need Pricey Dental Care,” by David Tuller

Margot Sanger-Katz: The New York Times’ “New Cancer Treatments Lie Hidden Under Mountains of Paperwork,” by Gina Kolata

Sarah Kliff: Vox.com’s “He Went to an In-Network Emergency Room. He Still Ended Up With a $7,924 Bill,” by Sarah Kliff

Alice Ollstein: AP’s “AP Interview: Unemployment Exemption Gone From Medicaid Bill,” by David Eggert

And: Talking Points Memo’s “Trump Admin Poised To Give Rural Whites A Carve-Out On Medicaid Work Rules,” by Alice Ollstein

To hear all our podcasts, click here.

And subscribe to What the Health? on iTunesStitcher or Google Play.

Watch: What’s In The White House Plan To Lower Drug Prices

President Donald Trump began talking about the high cost of prescription drugs long before he took office. He often spoke about how drug companies “got away with murder” on the campaign trail.

He has continued these attacks, and in April the Trump administration unveiled a 44-page blueprint.

But what’s in it?

KHN’s Sarah Jane Tribble breaks it down, explaining the real-life consequences.

Drugmakers Blamed For Blocking Generics Have Milked Prices And Cost U.S. Billions

Makers of brand-name drugs called out by the Trump administration for potentially stalling generic competition have hiked their prices by double-digit percentages since 2012 and cost Medicare and Medicaid nearly $12 billion in 2016, a Kaiser Health News analysis has found.

As part of President Donald Trump’s promise to curb high drug prices, the Food and Drug Administration posted a list of pharmaceutical companies that makers of generics allege refused to let them buy the drug samples needed to develop their products. For approval, the FDA requires so-called bioequivalence testing using samples to demonstrate that generics are the same as their branded counterparts.

The analysis shows that drug companies that may have engaged in what FDA Commissioner Scott Gottlieb called “shenanigans” to delay the entrance of cheaper competitors onto the market have indeed raised prices and cost taxpayers more money over time.

The FDA listed more than 50 drugs whose manufacturers have withheld or refused to sell samples, and cited 164 inquiries for help obtaining them. Thirteen of these pleas from makers of generics pertained to Celgene’s blockbuster cancer drug Revlimid, which accounted for 63 percent of Celgene’s revenue in the first quarter of 2018, according to a company press release.

The brand-name drug companies “wouldn’t put so much effort into fighting off competition if these weren’t [such] lucrative sources of revenue,” said Harvard Medical School instructor Ameet Sarpatwari. “In the case of a blockbuster drug, that can be hundreds of millions of dollars of revenue for the brand-name drugs and almost the same cost to the health care system.”

Indeed, a KHN analysis found that 47 of the drugs cost Medicare and Medicaid almost $12 billion in 2016. The spending totals don’t include rebates, which drugmakers return to the government after paying for the drugs upfront but are not public. The rebates ranged from 9.5 percent to 26.3 percent for Medicare Part D in 2014, the most recent year that data are available.

The remaining drugs do not appear in the Medicare and Medicaid data.

(Story continues below.)

By delaying development of generics, drugmakers can maintain their monopolies and keep prices high. Most of the drugs cost Medicare Part D more in 2016 than they did in 2012, for an average spending increase of about 60 percent more per unit. This excludes drugs that don’t appear in the 2012 Medicare Part D data.

Revlimid cost Medicare Part D $2.7 billion in 2016, trailing only Harvoni, which treats hepatitis C and is not on the FDA’s new list. The cost of Revlimid, which faces no competition from generics, has jumped 40 percent per unit in just four years, the Medicare data show, and cost $75,200 per beneficiary in 2016.

Some drugs on the FDA’s list, including Celgene’s, are part of a safety program that can require restricted distribution of brand-name drugs that have serious risks or addictive qualities. Drugmakers with products in the safety program sometimes say they can’t provide samples unless the generics manufacturer jumps through a series of hoops “that generic companies find hard or impossible to comply with,” Gottlieb said in a statement.

The Department of Health and Human Services Office of Inspector General issued a report in 2013 that said the FDA couldn’t prove that the program actually improved safety, and Sarpatwari said there’s evidence drugmakers are abusing it to stave off competition from generics.

Gottlieb said the FDA will be notifying the Federal Trade Commission about pleas for help from would-be generics manufacturers about obtaining samples, and he encouraged the manufacturers to do the same if they suspect they’re being thwarted by anticompetitive practices.

Celgene spokesman Greg Geissman said the company has sold samples to generics manufacturers and will continue to do so. He stressed maintaining a balance of innovation, generic competition and safety.

“Even a single dose of thalidomide, the active ingredient in Thalomid, can cause irreversible, debilitating birth defects if not properly handled and dispensed. Revlimid and Pomalyst are believed to have similar risks,” Geissman said.

The highest number of pleas for help related to Actelion Pharmaceuticals’ pulmonary hypertension drug Tracleer. In 2016, that drug cost Medicare $90,700 per patient and more than $304 million overall. Meanwhile, spending per unit jumped 52 percent from 2012 through 2016.

Actelion was acquired by Johnson & Johnson’s pharmaceutical arm, Janssen, in 2017.

(Story continues below.)

Actelion spokeswoman Colleen Wilson said that the company “cooperate[s]” with makers of generic drugs and “has responded to all requests it has received directly from generic manufacturers seeking access to its medications for bioequivalence testing.”

PhRMA, the trade group for makers of brand-name pharmaceuticals, said the FDA’s list was somewhat unfair because it lacked context and responses from those it represents.

“While we must continue to foster a competitive marketplace, PhRMA is concerned that FDA’s release of the ‘inquiries’ it has received lacks proper context and conflates a number of divergent scenarios,” said PhRMA spokesman Andrew Powaleny.

Congress is considering the CREATES Act, which stands for “Creating and Restoring Equal Access to Equivalent Samples” and would foster competition in part by allowing generics manufacturers to sue brand-name drug manufacturers to compel them to provide samples.

The bill’s sponsor, Sen. Patrick Leahy (D-Vt.), said more transparency from the FDA is helpful, but more work from the agency is needed to end the anticompetitive tactic. “With billions of dollars at stake, a database alone will not stop this behavior,” Leahy said.

Co-sponsor Sen. Chuck Grassley (R-Iowa), chairman of the Judiciary Committee, expressed similar sentiments, telling KHN: “The CREATES Act is necessary because it would serve as a strong deterrent to pharmaceutical companies that engage in anticompetitive practices to keep low-cost generic drugs off the market.”

The FDA hasn’t come out in support of CREATES. “They should know that this is going to require a legislative solution,” Sarpatwari said. “Why are they not stepping into this arena and saying that?”


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

Trump Proposes Cutting Planned Parenthood Funds. What Does That Mean?

The planned revival of a policy dating to Ronald Reagan’s presidency may finally present a way for President Donald Trump to fulfill his campaign promise to “defund” Planned Parenthood. Or at least to evict it from the federal family planning program, where it provides care to more than 40 percent of that program’s 4 million patients.

Congress last year failed to wipe out funding for Planned Parenthood, because the bill faced overwhelming Democratic objections and would not have received the 60 votes needed to pass in the Senate.

But the imposition of a slightly retooled version of a regulation, which was upheld by the Supreme Court in 1991 after a five-year fight, could potentially accomplish what Congress could not.

The rules now under review, according to Trump administration officials, would require facilities receiving federal family planning funds to be physically separate from those that perform abortion; would eliminate the requirement that women with unintended pregnancies be counseled on their full range of reproductive options; and would ban abortion referrals.

All those changes would particularly affect Planned Parenthood.

Planned Parenthood, which provides a broad array of reproductive health services to women and men, also provides abortion services using non-federal funds. Cutting off funding has been the top priority for anti-abortion groups, which supported candidate Trump.

“A win like this would immediately disentangle taxpayers from the abortion business and energize the grassroots as we head into the critical midterm elections,” Marjorie Dannenfelser, president of the anti-abortion Susan B. Anthony List, said in a statement.

In a conference call with reporters, Planned Parenthood officials said they would fight the new rules.

“We’ve been very clear, Planned Parenthood has an unwavering commitment to ensuring everyone has access to the full range of reproductive health care, and that includes abortion,” said Dawn Laguens, executive vice president of the Planned Parenthood Federation of America.

Here is a guide to what the proposal could do and what it could mean for Planned Parenthood and the family planning program:

What Is Title X?

The federal family planning program, known as “Title Ten,” is named for its section in the federal Public Health Service Act. It became law in 1970, three years before the Supreme Court legalized abortion in Roe v Wade.

The original bill was sponsored by then Rep. George H.W. Bush (R-Texas) and signed into law by President Richard Nixon.

The program provides wellness exams and comprehensive contraceptive services, as well as screenings for cancer and sexually transmitted diseases for both women and men.

In 2016, the most recent year for which statistics have been published, Title X served 4 million patients at just under 4,000 sites.

Title X patients are overwhelmingly young, female and low-income. An estimated 11 percent of Title X patients in 2016 were male; two-thirds of patients were under age 30; and nearly two-thirds had income below the federal poverty line.

What Is Planned Parenthood’s Relationship To Title X And Medicaid?

Planned Parenthood affiliates account for about 13 percent of total Title X sites but serve an estimated 40 percent of its patients. Only about half of Planned Parenthood affiliates perform abortions, although the organization in its entirety is the nation’s leading abortion provider.

Planned Parenthood also gets much more federal funding for services provided to patients on the Medicaid program (although not for abortion) than it does through Title X.

Eliminating Medicaid funding for Planned Parenthood has proven more difficult for lawmakers opposed to the organization because the federal Medicaid law includes the right for patients to select their providers. Changing that also would require a 60-vote majority in the Senate. So that particular line of funding is likely not at risk.

While opponents of federal funding for Planned Parenthood have said that other safety-net clinics could make up the difference if Planned Parenthood no longer participates in Title X, several studies have suggested that in many remote areas Planned Parenthood is the only provider of family planning services and the only provider that regularly stocks all methods of birth control.

Texas, Iowa and Missouri in recent years have stopped offering family planning services through a special Medicaid program to keep from funding Planned Parenthood. Texas is seeking a waiver from the Trump administration so that its program banning abortion providers could still receive federal funding. No decision has been made yet, federal officials said.

Why Is Planned Parenthood’s Involvement With Title X Controversial?

Even though Planned Parenthood cannot use federal funding for abortions, anti-abortion groups claim that federal funding is “fungible” and there is no way to ensure that some of the funding provided for other services does not cross-subsidize abortion services.

Planned Parenthood has also been a longtime public target for anti-abortion forces because it is such a visible provider and vocal proponent of legal abortion services.

In the early 1980s, the Reagan administration tried to separate the program from its federal funding by requiring parental permission for teens to obtain birth control. That was followed by efforts to eliminate abortion counseling.

Starting in 2011, undercover groups accused the organization of ignoring sex traffickers and selling fetal body parts in an effort to get the organization defunded. Planned Parenthood denies the allegations.

What Happened The Last Time An Administration Tried To Move Planned Parenthood Out Of Title X?

In 1987, the Reagan administration proposed what came to be known as the “gag rule.” Though the administration’s new proposal is not yet public, because the details are still under review by the Office of Management and Budget, the White House released a summary, saying the new rule will be similar although not identical to the Reagan-era proposal.

The original gag rule would have forbidden Title X providers from abortion counseling or referring patients for abortions, required physical separation of Title X and abortion-providing facilities and forbidden recipients from using nonfederal funds for lobbying, distributing information or in any way advocating or encouraging abortion. (The Planned Parenthood Federation of America, the umbrella group for local affiliates, has a separate political and advocacy arm, the Planned Parenthood Action Fund.)

Those rules were the subject of heated congressional debate through most of the George H.W. Bush administration and were upheld in a 5-4 Supreme Court ruling in 1991, Rust v. Sullivan.

Even then, the gag rule did not go into effect because subsequent efforts to relax the rules somewhat to allow doctors (but not other health professionals) to counsel patients on the availability of abortion created another round of legal fights.

Eventually the rule was in effect for only about a month before it was again blocked by a U.S. appeals court. President Bill Clinton canceled the rules by executive order on his second day in office, and no other president tried to revive them until now.

How Is The Trump Administration’s Proposal Different From Earlier Rules?

According to the summary of the new proposal, released Friday, it will require physical separation of family planning and abortion facilities, repeal current counseling requirements, and ban abortion referrals.

One of the biggest differences, however, is that the new rules will not explicitly forbid abortion counseling by Title X providers.

But Planned Parenthood officials say that allowing counseling while banning referrals is a distinction without a difference.

Kashif Syed, a senior policy analyst for the organization said: “Blocking doctors from telling a patient where they can get safe and legal care in this country is the definition of a gag rule.”

What Happens Next?

All proposed rules are reviewed by the Office of Management and Budget. Sometimes they emerge and are published in a few days; sometimes they are rewritten, and it takes months.

Meanwhile, Planned Parenthood officials said they will not know if they will take legal action until they see the final language of the rule. But they say they do plan to use the regulatory process to fight the changes that have been made public so far.


KHN’s coverage of women’s health care issues is supported in part by The David and Lucile Packard Foundation.

Best Reads Of The Week With Brianna Labuskes

From nursing home bullies to do-it-yourself gene editing in teenagers’ garages, this week was a wild — or should we say “royal” in anticipation of a certain big event across the Atlantic — ride in health news. So, buckle up, here’s what you might have missed.

This is the story that you’ll get sick of reading over the next six months, but it’s important because you can bet that the rising health law premiums will play a big role in the midterms. The only question is: Who’s going to win the blame game? As the first glimpse of sky-high rate hikes come out, Democrats are eager to point fingers, but Republicans say their liberal colleagues should “look in the mirror” when it comes to assigning responsibility.

• The Hill: Premium Hikes Reignite the ObamaCare Wars


In a decision that was expected, the Trump administration is resurrecting a Reagan-era policy that would add abortion restrictions to federally funded family planning programs. Abortion advocates say the policy — which they call a domestic “gag order — puts government into the middle of the doctor-patient relationship. But the other side sees it as another victory from an administration that is living up to its campaign promises.

• The Associated Press: Trump to Deny Funds to Clinics That Discuss Abortion


Pharma remained in the spotlight this week after all the attention from President Donald Trump’s plan to curb high drug costs, announced last Friday. While HHS Secretary Alex Azar is busy adamantly defending that blueprint, the Food and Drug Administration is naming names of companies accused of hindering generics development, in hopes that public shaming can get some bad actors to “end their shenanigans.” Celgene is one of those drugmakers in the hot seat.

• The Associated Press: FDA Names Drugmakers Accused of Blocking Cheaper Generics

• NPR: Celgene’s Patent Fortress Protects Revlimid, Thalomid

And you know how Viagra was a happy accident? Well, researchers want fewer oopsie successes and more that are deliberately planned.

 • The Washington Post: Viagra and Many Other Drugs Were Discovered by Chance. Now Science Is Hoping to Change That.


It was a good week to keep an eye on the states. Up in Vermont, the governor signed legislation that could allow the state to import drugs from Canada. HHS still has to approve the policy, though, and since Azar has called the tactic “a gimmick,” there’s no sure bet that it will move forward. The health world’s eyes are also on the state because its experimental plan to control costs is going to come within 1 percent of its financial target. An “impressive” feat, experts say.

• Politico: Vermont Becomes First State to Permit Drug Imports From Canada

• The Associated Press: Eyes Turn to Vermont As It Sees Success With Health System

And Maryland remains on the forefront of innovative thinking to control costs with the approval of its unique all-payer model.

• The Associated Press: Maryland Announces Agreement on All-Payer Health Model


“It’s one of the big demographic mysteries of recent times,” fertility experts say of the nation’s record-low birth rate for the second year in a row. Researchers aren’t sure why the numbers haven’t increased along with the improved economy as would be expected. But some suspect that younger women are putting off having babies as they focus on their careers.

• The New York Times: U.S. Fertility Rate Fell to a Record Low, for a Second Straight Year

And this doctor is pushing the boundaries of what is considered possible in fertility research with “three-parent babies” — sparking talk of sci-fi dystopian worlds. But critics worry there’s no oversight to stop the slide down the slippery slope of tinkering with human life.

• The Washington Post: Fertility Doctor John Zhang Pushes Boundaries in Human Reproduction


In the miscellaneous gotta-read files: An in-depth investigation reveals just how far a center once renowned for its heart transplant program has fallen; a tragic suicide sparks debate over whether colleges should tell parents when students are struggling; what the president’s proposed border wall means for a community burdened by extremely poor health; and a keyless ignition jaw-dropper. People are leaving their cars in the garage — not realizing the motors are still running — and suffering fatal consequences.

• ProPublica: At St. Luke’s in Houston, Patients Suffer As a Renowned Heart Transplant Program Loses Its Luster

• The New York Times: His College Knew of His Despair. His Parents Didn’t, Until It Was Too Late.

• The Wall Street Journal: Youth Suicidal Behavior Is on the Rise, Especially Among Girls

• US News & World Report: A Battle for Community Health in Texas’ Rio Grande Valley

• The New York Times: Deadly Convenience: Keyless Cars and Their Carbon Monoxide Toll


Have a great weekend!

Between Death And Deportation

“Dear the most highly respected judge and court, I’m writing this because I love my mom. My mom is very important to me. I have no idea what to do without her. Even though my mom’s afraid, she’s not giving up.”

This is the beginning of a plea written by a 13-year-old girl to the Department of Homeland Security. The goal: to get her mother the insurance coverage she would need to enter a clinical trial.

Two years ago, the girl’s mother learned she had advanced stomach cancer. Undocumented and uninsured, the mother received free treatment at Bellevue Hospital in Manhattan through New York’s emergency Medicaid program, which undoubtedly prolonged her life.

Then, last fall, her doctor identified her as a good candidate for a medicine that has been remarkably effective for some lung cancers. Would it work for her disease? The researchers were eager for patients like J. to help them answer that question. (Kaiser Health News is identifying the patient by her first initial only, because of the threat of deportation.)

“You look at these clinical trials — there are some patients who just forget to die,” said Dr. Steve Lee, J.’s oncologist. “She could be one of these long-term survivors.”

But it would not be a simple process for J. to enter a clinical trial. She emigrated from China 18 years ago on a visa that had long since expired. Her husband’s visa also expired years ago. The Queens couple have three children who are U.S. citizens, ages 13, 12 and 4.

To be accepted into the trial, J. needed the more complete coverage traditional Medicaid offers. And to get that meant declaring herself to Homeland Security and asking the agency not to act on its standing deportation order against her. That would call attention to herself and her status — and provide the agency with her address and the names of everyone she lived with.

“Before getting sick, legal status was clearly important,” J. said through a translator. “Now, both legal immigration status and my ability to continue to live are intertwined, because I can only get good treatment if I obtain legal status.”

The family faced this dilemma under President Donald Trump’s growing threat of deportations. Federal figures show arrests of undocumented people living in the U.S. were up 40 percent in the first four months of 2017 compared with the same period in 2016. The administration also is considering a change that would penalize legal immigrants if they use public benefits like Medicaid.

Up to the point of the clinical trial, J. got care very similar to what anyone with private insurance might get. And that is a function of residence. Each state covers care for undocumented immigrants through its emergency Medicaid program differently, and New York has one of the most generous programs in the country.

“In some states, they say giving you dialysis is keeping you from dying. We are going to put you on emergency Medicaid,” said Steven Wallace, a health professor at UCLA, who has studied immigrant health care in the U.S. “In other states — Georgia comes to mind — they will not put you on emergency Medicaid until you are in diabetic shock.”

By the time J. learned of the drug trial, she’d had chemotherapy and separate surgeries to have her ovaries and part of her stomach removed. As comprehensive as New York’s emergency Medicaid program is, it does not cover the costs associated with drug trials, even in dire situations.

For context, some estimates suggest that stomach cancer treatment for one year costs about $100,000. Costs vary by hospital, and Medicaid pays hospitals less.

Bellevue did not provide a tally of J.’s medical bills. The limited research available on care for very sick, undocumented immigrants shows that the treatment can vary even by county within a state. More often than not, Wallace said, when beset by a life-threatening illness such as stomach cancer, undocumented women and men miss out on the tests, procedures and drugs that could extend their lives.

By virtue of living in New York, J. did receive good care. But was the chance at the drug trial worth the risk of her or her husband being deported?

For most of an interview with a reporter, J. spoke Mandarin through a translator because of her limited English skills. But when asked whether she was more afraid to die or be deported, she answered directly, in English.

“Yeah, I [am] afraid to die, more than be deported,” J. said. “Of course. Because my family need[s] me. My children need me.”

Domna Antoniadis, a senior staff attorney at the New York Legal Assistance Group, works just across the hall from Dr. Lee at Bellevue. Her job is to help patients jump through bureaucratic hoops to get health coverage, and she said J. had a compelling case.

“She’s been here for almost 20 years. She has three young U.S. citizen children. She’s never been arrested; no criminal history. She’s worked. And right now, she has a very aggressive form of cancer,” Antoniadis said. “She’s saying, ‘Here I am. This is what’s going on with me, but please don’t remove me.’”

J.’s husband said his wife did everything she could to battle her disease, including changing her diet, walking up hills for exercise and following doctor’s orders. The decision on the drug trial was clear, he said.

“Life is more important than anything else. You have to face the cancer,” he said, speaking through a translator. “You have to face the pressures. You just have to do whatever it takes so that you can keep on living.”

J. submitted the application, and Antoniadis advised the family to be cautious. She told them if federal agents show up at the house, before opening the door the family should make sure the officials have a warrant. Her attorney gave J. a guide outlining her rights in Mandarin.

Over the fall, J.’s husband said the family felt vulnerable.

“We watch the news,” he said. “We see the things Donald Trump says, and we see that he’s been tough on immigration and has tried to make a lot of changes. So, for sure, we’re more worried.”

As they waited to hear from Homeland Security, a kind of balled-up fear settled over the family. J. talked less. Their 13-year-old daughter took over doing the dinner dishes. Their 12-year-old son set the table and played fewer video games, trying to make his mom happy. Their kid sister, age 4, asked why everything was different.

Before Homeland Security could respond, J. got word from New York’s traditional Medicaid program that she was accepted. The application to delay deportation was enough for the state to open the program to J. She had her first drug trial treatment last December. She tried to savor life.

“Now I’m not nearly as strict with my kids. I sort of just let them be kids. Before, I’d give them extra homework on top of what’s assigned at school. Now, I just want them to be happy,” she said. “Between my husband and me, we care a lot less about money. Before, we only go out to dinner once a month. Now we treasure every moment we have.”

Almost as soon as J. was in the drug trial, she was out. Her oncologist, Lee, said J. “had rapid growth of her cancer” and couldn’t remain in the trial. By early January, J. had started hospice. Her husband said it was a very difficult month for her, and on Feb. 6, J. died.

Asked if he thought the trial was worth all the risk and stress it caused the family, Lee said: “I think it’s easier to say that going on the drug trial was a waste of time, in retrospect. But the alternative for cancer like this is that she would invariably die. So I think that the opportunity to give her a shot at long-term survival was one worth putting a lot on the line for.”

Lee said what the trial really gave J., and her family — for a time at least — was hope.

Dan Gorenstein is the health care reporter for Marketplace. This story was produced in partnership with WHYY’s The Pulse and Kaiser Health News.

Between Death And Deportation

“Dear the most highly respected judge and court, I’m writing this because I love my mom. My mom is very important to me. I have no idea what to do without her. Even though my mom’s afraid, she’s not giving up.”

This is the beginning of a plea written by a 13-year-old girl to the Department of Homeland Security. The goal: to get her mother the insurance coverage she would need to enter a clinical trial.

Two years ago, the girl’s mother learned she had advanced stomach cancer. Undocumented and uninsured, the mother received free treatment at Bellevue Hospital in Manhattan through New York’s emergency Medicaid program, which undoubtedly prolonged her life.

Then, last fall, her doctor identified her as a good candidate for a medicine that has been remarkably effective for some lung cancers. Would it work for her disease? The researchers were eager for patients like J. to help them answer that question. (Kaiser Health News is identifying the patient by her first initial only, because of the threat of deportation.)

“You look at these clinical trials — there are some patients who just forget to die,” said Dr. Steve Lee, J.’s oncologist. “She could be one of these long-term survivors.”

But it would not be a simple process for J. to enter a clinical trial. She emigrated from China 18 years ago on a visa that had long since expired. Her husband’s visa also expired years ago. The Queens couple have three children who are U.S. citizens, ages 13, 12 and 4.

To be accepted into the trial, J. needed the more complete coverage traditional Medicaid offers. And to get that meant declaring herself to Homeland Security and asking the agency not to act on its standing deportation order against her. That would call attention to herself and her status — and provide the agency with her address and the names of everyone she lived with.

“Before getting sick, legal status was clearly important,” J. said through a translator. “Now, both legal immigration status and my ability to continue to live are intertwined, because I can only get good treatment if I obtain legal status.”

The family faced this dilemma under President Donald Trump’s growing threat of deportations. Federal figures show arrests of undocumented people living in the U.S. were up 40 percent in the first four months of 2017 compared with the same period in 2016. The administration also is considering a change that would penalize legal immigrants if they use public benefits like Medicaid.

Up to the point of the clinical trial, J. got care very similar to what anyone with private insurance might get. And that is a function of residence. Each state covers care for undocumented immigrants through its emergency Medicaid program differently, and New York has one of the most generous programs in the country.

“In some states, they say giving you dialysis is keeping you from dying. We are going to put you on emergency Medicaid,” said Steven Wallace, a health professor at UCLA, who has studied immigrant health care in the U.S. “In other states — Georgia comes to mind — they will not put you on emergency Medicaid until you are in diabetic shock.”

By the time J. learned of the drug trial, she’d had chemotherapy and separate surgeries to have her ovaries and part of her stomach removed. As comprehensive as New York’s emergency Medicaid program is, it does not cover the costs associated with drug trials, even in dire situations.

For context, some estimates suggest that stomach cancer treatment for one year costs about $100,000. Costs vary by hospital, and Medicaid pays hospitals less.

Bellevue did not provide a tally of J.’s medical bills. The limited research available on care for very sick, undocumented immigrants shows that the treatment can vary even by county within a state. More often than not, Wallace said, when beset by a life-threatening illness such as stomach cancer, undocumented women and men miss out on the tests, procedures and drugs that could extend their lives.

By virtue of living in New York, J. did receive good care. But was the chance at the drug trial worth the risk of her or her husband being deported?

For most of an interview with a reporter, J. spoke Mandarin through a translator because of her limited English skills. But when asked whether she was more afraid to die or be deported, she answered directly, in English.

“Yeah, I [am] afraid to die, more than be deported,” J. said. “Of course. Because my family need[s] me. My children need me.”

Domna Antoniadis, a senior staff attorney at the New York Legal Assistance Group, works just across the hall from Dr. Lee at Bellevue. Her job is to help patients jump through bureaucratic hoops to get health coverage, and she said J. had a compelling case.

“She’s been here for almost 20 years. She has three young U.S. citizen children. She’s never been arrested; no criminal history. She’s worked. And right now, she has a very aggressive form of cancer,” Antoniadis said. “She’s saying, ‘Here I am. This is what’s going on with me, but please don’t remove me.’”

J.’s husband said his wife did everything she could to battle her disease, including changing her diet, walking up hills for exercise and following doctor’s orders. The decision on the drug trial was clear, he said.

“Life is more important than anything else. You have to face the cancer,” he said, speaking through a translator. “You have to face the pressures. You just have to do whatever it takes so that you can keep on living.”

J. submitted the application, and Antoniadis advised the family to be cautious. She told them if federal agents show up at the house, before opening the door the family should make sure the officials have a warrant. Her attorney gave J. a guide outlining her rights in Mandarin.

Over the fall, J.’s husband said the family felt vulnerable.

“We watch the news,” he said. “We see the things Donald Trump says, and we see that he’s been tough on immigration and has tried to make a lot of changes. So, for sure, we’re more worried.”

As they waited to hear from Homeland Security, a kind of balled-up fear settled over the family. J. talked less. Their 13-year-old daughter took over doing the dinner dishes. Their 12-year-old son set the table and played fewer video games, trying to make his mom happy. Their kid sister, age 4, asked why everything was different.

Before Homeland Security could respond, J. got word from New York’s traditional Medicaid program that she was accepted. The application to delay deportation was enough for the state to open the program to J. She had her first drug trial treatment last December. She tried to savor life.

“Now I’m not nearly as strict with my kids. I sort of just let them be kids. Before, I’d give them extra homework on top of what’s assigned at school. Now, I just want them to be happy,” she said. “Between my husband and me, we care a lot less about money. Before, we only go out to dinner once a month. Now we treasure every moment we have.”

Almost as soon as J. was in the drug trial, she was out. Her oncologist, Lee, said J. “had rapid growth of her cancer” and couldn’t remain in the trial. By early January, J. had started hospice. Her husband said it was a very difficult month for her, and on Feb. 6, J. died.

Asked if he thought the trial was worth all the risk and stress it caused the family, Lee said: “I think it’s easier to say that going on the drug trial was a waste of time, in retrospect. But the alternative for cancer like this is that she would invariably die. So I think that the opportunity to give her a shot at long-term survival was one worth putting a lot on the line for.”

Lee said what the trial really gave J., and her family — for a time at least — was hope.

Dan Gorenstein is the health care reporter for Marketplace. This story was produced in partnership with WHYY’s The Pulse and Kaiser Health News.

Podcast: KHN’s ‘What The Health?’ Much Ado About Drug Prices

President Donald Trump’s blueprint to reduce drug prices frames almost as many questions as answers, but it does shine light on a vexing and complicated problem. Meanwhile, Vermont passed a law to do something that’s not in the president’s plan: import cheaper prescription drugs from Canada. The state will need federal permission to do that, which is unlikely to be granted.

And Timothy Jost, emeritus professor of law at Washington and Lee University in Virginia, discusses the state of the Affordable Care Act and what might be in the health law’s immediate future.

This week’s panelists for KHN’s “What the Health?” are Julie Rovner of Kaiser Health News, Anna Edney of Bloomberg News, Joanne Kenen of Politico and Rebecca Adams of CQ Roll Call.

Among the takeaways from this week’s podcast:

  • It is not yet clear how many of the myriad proposals in Trump’s 44-page prescription drug price proposal will be implemented, but the plan does jump-start the discussion across a wide range of drug issues.
  • Although Trump walked back his promise to move Medicare toward negotiating drug prices, his drug proposal would move some drugs administered in physicians’ offices — currently paid under a formula — to be handled by the Part D prescription drug plans, for which insurance companies negotiate prices.
  • The drug price initiative is welcomed by Republican candidates who think it will be a potent defense against Democratic charges that GOP efforts on the Affordable Care Act are driving overall health care spending up.
  • With the increasing reports that in the not-too-distant future one or more justices will retire from the Supreme Court, abortion-rights activists are nervous about how a new court would view the issue and are working hard to avoid a big federal lawsuit that could overturn Roe v Wade.

Plus, for “extra credit,” the panelists recommend their favorite health stories of the week they think you should read, too.

Julie Rovner: Kaiser Health News’ “For The Babies Of The Opioid Crisis, The Best Care May Be Mom’s Recovery,” by Sarah Jane Tribble

Joanne Kenen: Science Magazine’s “Hoping to Head Off an Epidemic, Congo Turns to Experimental Ebola Vaccine,” by Jon Cohen

Rebecca Adams: Kaiser Health News’ “Under Trump Proposal, Lawful Immigrants Might Be Inclined To Shun Health Benefits,” by Christina Jewett and Melissa Bailey and Paula Andalo

Anna Edney: Vox.com’s “The Blockbuster Fight Over This Obscure Federal Program Explains America’s Drug Prices,” by Dylan Scott

To hear all our podcasts, click here.

And subscribe to What the Health? on iTunesStitcher or Google Play.

Podcast: KHN’s ‘What The Health?’ Much Ado About Drug Prices

President Donald Trump’s blueprint to reduce drug prices frames almost as many questions as answers, but it does shine light on a vexing and complicated problem. Meanwhile, Vermont passed a law to do something that’s not in the president’s plan: import cheaper prescription drugs from Canada. The state will need federal permission to do that, which is unlikely to be granted.

And Timothy Jost, emeritus professor of law at Washington and Lee University in Virginia, discusses the state of the Affordable Care Act and what might be in the health law’s immediate future.

This week’s panelists for KHN’s “What the Health?” are Julie Rovner of Kaiser Health News, Anna Edney of Bloomberg News, Joanne Kenen of Politico and Rebecca Adams of CQ Roll Call.

Among the takeaways from this week’s podcast:

  • It is not yet clear how many of the myriad proposals in Trump’s 44-page prescription drug price proposal will be implemented, but the plan does jump-start the discussion across a wide range of drug issues.
  • Although Trump walked back his promise to move Medicare toward negotiating drug prices, his drug proposal would move some drugs administered in physicians’ offices — currently paid under a formula — to be handled by the Part D prescription drug plans, for which insurance companies negotiate prices.
  • The drug price initiative is welcomed by Republican candidates who think it will be a potent defense against Democratic charges that GOP efforts on the Affordable Care Act are driving overall health care spending up.
  • With the increasing reports that in the not-too-distant future one or more justices will retire from the Supreme Court, abortion-rights activists are nervous about how a new court would view the issue and are working hard to avoid a big federal lawsuit that could overturn Roe v Wade.

Plus, for “extra credit,” the panelists recommend their favorite health stories of the week they think you should read, too.

Julie Rovner: Kaiser Health News’ “For The Babies Of The Opioid Crisis, The Best Care May Be Mom’s Recovery,” by Sarah Jane Tribble

Joanne Kenen: Science Magazine’s “Hoping to Head Off an Epidemic, Congo Turns to Experimental Ebola Vaccine,” by Jon Cohen

Rebecca Adams: Kaiser Health News’ “Under Trump Proposal, Lawful Immigrants Might Be Inclined To Shun Health Benefits,” by Christina Jewett and Melissa Bailey and Paula Andalo

Anna Edney: Vox.com’s “The Blockbuster Fight Over This Obscure Federal Program Explains America’s Drug Prices,” by Dylan Scott

To hear all our podcasts, click here.

And subscribe to What the Health? on iTunesStitcher or Google Play.