Right now, there are dozens of patients — U.S. citizens — in New Zealand hospitals who are fighting the clock. They have only a few weeks to recover and get home to the tiny island of American Samoa, a U.S. territory in the South Pacific.

“We have a cancer patient that is coming back in December,” says Sandra King Young, who runs the Medicaid program in American Samoa. “We can only give him six weeks of chemo, radiation and surgery. He has a good chance of survival if he has the full year of treatment, but not six weeks. The patient and family understand, and since they have no money, they have agreed to come back.”

The federal money to fully fund the Medicaid program in American Samoa and in all other U.S. territories is about to run out. As a consequence, the off-island referral program to treat conditions that the territory doesn’t have the local capacity or facilities to treat — the program that brought these patients to New Zealand — is getting shut down.

“It’s devastating for those people who need those lifesaving services,” King Young says. “People who need cancer treatment won’t get it. Children with rheumatic heart disease won’t get the heart surgeries that they need.”

All five of the U.S. territories affected — collectively home to more than 3 million Americans — are now desperately trying to figure out how to keep Medicaid running with only a fraction of the money they’ve had for the last several years. If Congress doesn’t increase the amount of designated money by the end of the year, the U.S. Virgin Islands and Guam say they would need to cut their Medicaid rolls in half; Puerto Rico says it would need to cut back dental and prescription drug services.

This is what people working on the issue have come to call the “Medicaid cliff.”

How did we get here?

When it comes to Medicaid, the federal government treats U.S. territories differently from how it treats states.

In U.S. states, the amount that the federal government contributes to Medicaid varies based on a formula in the law that relies on per capita income in each state. For instance, Alabama has a match rate of 72%; what this translates to is that for every dollar Alabama spends on Medicaid, the federal government contributes about $2.57 to the program.

But that’s not how it works in the territories, where even though the populations are all low income, the federal government’s match rate is set in statute at 55%. What this translates to is that for every dollar a U.S. territory spends on Medicaid, the federal government contributes $1.25.

The other significant difference is that the federal contribution to Medicaid in the territories is capped, with a set allotment of federal funds every year. Federal spending on Medicaid in states is not.

The low matching rate and the annual cap — that’s pretty much how it has always been for Medicaid in the territories, says Robin Rudowitz, who co-directs the Program on Medicaid and the Uninsured at the Kaiser Family Foundation. “These particular provisions historically have always been part of how they have been financed,” she says.

Here’s how the territories found themselves peering over the “Medicaid cliff.” For the last few years, the territories have had billions of dollars more in federal funding to run their programs than their usual capped allotments. First, the Affordable Care Act provided a one-time grant of $7.3 billion (which kicked off in 2011) for the territories’ Medicaid programs. Then, in 2017, after two Category 5 hurricanes ravaged Puerto Rico and the U.S. Virgin Islands, an extra $4.9 billion designated for their Medicaid programs was added to the 2018 Bipartisan Budget Act.

Now, we’ve come to the cliff’s edge. Most of these two pots of money ran out at the end of September, with just a bit of funding from the ACA still available through the end of 2019.

That leaves, essentially, just the capped allotment of federal dollars for each of the territories — far less than what the territories have come to rely on to provide care to their Medicaid enrollees in recent years.

“The capped financing amounts were low and did not meet all of the needs of the population in the territories,” says Rudowitz. If the additional federal contributions are gone for good, she says, “given the share that they represent of the financing for Medicaid in these territories, it would mean major changes and reductions in care.”

The territories have known that this funding cliff was coming for years — the end to a major portion of the money was written into the ACA. Island health officials and care providers hoped Congress would have legislated a more permanent solution by now, but it hasn’t.

In recent months, Congress has passed continuing resolutions that have allowed the territories’ Medicaid programs to keep limping along. But without legislation that appropriates more money, the territories’ Medicaid programs all are in serious trouble.

The Medicaid and CHIP Payment and Access Commission, known as MACPAC, a nonpartisan government group that advises Congress on Medicaid policy, projected in July that all the territories will have budget shortfalls in 2020. When considered altogether, according to MACPAC’s report, their Medicaid programs will be more than $1 billion short.

This is why Medicaid directors in the U.S. territories are all sounding the alarm. King Young, of American Samoa, points to news coverage as far back as the 1960s that described her island as “America’s Shame in the South Seas” because of rampant pollution and neglect.

“Right now, this is the United States’ shame in the islands,” she says. “Tell me if that’s acceptable in the United States, to stand by and say, ‘Oh, sorry, we can’t give you that stent or that pacemaker, so it’s likely that you’ll have a stroke or heart attack and — that’s it.’ That’s what it means not to have enough Medicaid funding for the territories.”

“Full-court press” in Congress

The territories have been lobbying Congress, urging members to appropriate more funds for their Medicaid programs so health officials on the islands can avoid these hard choices — between, for instance, keeping a hospital going and paying for a patient’s cancer treatment.

Each territory has a nonvoting delegate in Congress. Puerto Rico also sent an additional delegation from the island last week to make the case to lawmakers that something must be done to stave off disaster.

“I would say that we’ve been doing a full-court press this entire calendar year,” says Jennifer Storipan, executive director of the Puerto Rico Federal Affairs Administration. “Gov. [Wanda] Vázquez has said that Medicaid funding is her highest priority for the island right now.”

A bill to temporarily increase funding to the territories’ Medicaid programs was passed by the House Energy and Commerce Committee in July but has yet to make it to the floor for a vote. It would greatly increase the federal match rate for Medicaid in all the territories and allocate a bonus $3 billion a year — but only for the next four years. There is no companion bill in the Senate.

“We’re in active negotiations with the Senate, but there is some opposition to our bill in the Senate,” says Rep. Darren Soto, D-Fla., who introduced the House legislation with Rep. Gus Bilirakis, R-Fla. Both represent districts in central Florida that have huge Puerto Rican populations, and Soto is of Puerto Rican descent. In the House, the bill has bipartisan support.

Opponents of the bill in the Senate say they worry that the billions of dollars that the territories are requesting could be misspent. Some senators have raised particular concerns about Puerto Rico. During a recent corruption probe, a Puerto Rican Medicaid official was arrested — that news emerged just a few days before a committee hearing on the territories’ Medicaid bill in July.

“So that didn’t help,” Soto says. Integrity provisions were added to the House bill, he says, specifically addressing concerns about Puerto Rico. “We do need to take it seriously and make sure that tax dollars are safeguarded,” he says, but adds, “There have been fraud instances in many states too, and we don’t take away their Medicaid funding.”

Some congressional Republicans note that the funding cliff was created by the Affordable Care Act, which gave extra funding to the territories for a limited time. In a letter to Secretary of Health and Human Services Alex Azar in July, several Republican members of the Senate Finance Committee raised concerns about Puerto Rico’s Medicaid spending.

“We are again confronting proposals for what amounts to another extension of boosted funding with no permanence or certainty and without any resolution of the Medicaid funding cliff constructed as part of the ACA,” they wrote.

“It is true: Giving these additional funds with a set expiration date, the legislation itself did create the cliff,” acknowledges the Kaiser Family Foundation’s Rudowitz. However, she says, Congress now should consider “the implications of letting that cliff happen and what that means to the health care systems in these territories.”

Planning for the worst

Medicaid program administrators from each of the territories gathered in an impromptu meeting outside the annual Medicaid directors conference last week. They have spent a lot of time together in Washington recently, testifying before congressional committees about the Medicaid funding crisis as it approaches.

“We were here in May. We were here in June,” Michal Rhymer-Browne, assistant commissioner with the Virgin Islands’ Department of Human Services, told NPR that day. “We pleaded. We shared ourselves — everything that we could.”

Despite their pleas, Congress has yet to act.

There are three options for managing a slashed budget for a program like Medicaid: reduce the size of payments to providers, cut the rolls or cover fewer services. All the territories say there’s no way to go lower on provider payments — Puerto Rico’s struggle with provider flight because of low pay is well known. So cutting the rolls and covered services is where the programs would need to find cuts, representatives of the territories say.

“Guam and [the Northern Mariana Islands] are about to topple over the cliff,” Rhymer-Browne says. “And for the Virgin Islands, we are nearing the cliff and seeing the bottom right now.”

Many of the territories would like to make improvements in the care they provide — invest in better facilities, recruit great health care providers, improve preventive care. All of that comes with upfront costs, they say, and they’ve had so much budget uncertainty that it has been impossible to move forward with those kinds of projects.

Right now, they’re just trying to keep the lights on.

“The urgency is here for us to let our congressional members know — even going to January is extremely dangerous,” Rhymer-Browne says. “It’s already catastrophic for our territories. We really need them to make a move.”

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It was a moment of genuine bipartisanship at the House Ways and Means Committee in October, as Democratic and Republican sponsors alike praised a bill called the “Restoring Access to Medication Act of 2019.”

The bill, approved by the panel on a voice vote, would allow consumers to use their tax-free flexible spending accounts or health savings accounts to pay for over-the-counter medications and women’s menstrual products.

Assuming the measure ultimately finds its way into law, it would also represent the latest piece of the Affordable Care Act’s financing to be undone.

Over-the-counter medication had been eligible to be considered a pretax expenditure in this way, before the ACA. But that eligibility was eliminated as part of a long list of new taxes and other measures that were designed to generate revenue to help pay for expanding health coverage to more people — a roughly $1 trillion cost of the health law over its first 10 years.

“It is paid for. It is fiscally responsible,” said President Barack Obama as he signed the ACA into law in 2010.

But not so much anymore. Many of the taxes and other provisions aimed at paying for that expanded health coverage “have been eliminated, delayed or are in jeopardy,” says Marc Goldwein of the Committee for a Responsible Federal Budget, a nonpartisan budget watchdog group. “All this stuff, it turns out, is very unpopular.”

The first piece of financing to disappear happened before most of the law even took effect. In 2011, Congress repealed a requirement that small businesses report to the IRS any payment of more than $600 to a vendor. The idea was that if more such payments were reported to taxing authorities, more taxes due on that income would actually get paid.

But small businesses complained — loudly — that the new paperwork requirement would be excessive, and Congress (and Obama) eventually agreed. The change alone eliminated an estimated $17 billion in ACA financing over 10 years.

Next, in 2015, Congress delayed (for the first time) the “Cadillac tax,” a 40% tax on the most generous employer health plans; one goal of that tax had been to curb excessive use of medical services.

That congressional delay came after intense lobbying by a coalition of business, labor and patient advocacy groups that banded together in a group called the Alliance to Fight the 40. It first got Congress to delay the Cadillac tax’s implementation from 2018 to 2020, then further pushed that date to 2022. And this past summer the House voted overwhelmingly to altogether eliminate the tax, which had been estimated to raise nearly $200 billion over the next decade.

Also on ice, thanks to that 2018 bill, are levies that were supposed to be paid by medical-device makers and health insurance companies, originally worth a combined $80 billion in financing during the law’s first decade.

Yet another — albeit fairly small — source of financing for the law went away in the 2017 GOP tax bill, which zeroed out the tax penalty for failing to have health insurance. The penalty raised $4 billion in 2018, the last year it was in effect.

Now it should be pointed out that the two ACA taxes that generate the most revenue are still on the books and collecting money. They are aimed at people with high incomes (more than $200,000 for individuals and $250,000 for couples) and were estimated to bring in more than $200 billion from 2010 to 2019. The measures, which don’t deal directly with services or provisions of the ACA, raise Medicare taxes on people at those higher incomes and increase taxes on unearned income.

The durability of those two taxes does not surprise Goldwein. Some are “unpopular to repeal,” he says, like “a tax on the rich that funds Medicare.”

What Goldwein does find surprising, though, is how durable some of the ACA’s other financing measures — reductions in spending ­— have been. For example, the health law, somewhat controversially, reduced Medicare payments to hospitals, insurance companies and a broad array of other health providers.

“The Medicare cuts have been for the most part surprisingly sustainable politically,” Goldwein says. Even when the GOP took over the House in 2011, its budget maintained the reductions from the ACA. So did the 2017 GOP “repeal and replace” proposal.

On the other hand, the appointed board of experts that was to rein in future Medicare spending, the “Independent Payment Advisory Board,” never got off the ground. Congress formally repealed it in 2018.

So what does this all mean? The past decade has shown that it has been relatively easy to make hard-won tax increases go away, suggesting that interest groups — particularly health industry groups representing drugmakers, insurers and hospitals — still wield a lot of power on Capitol Hill.

“Right now, everyone wants to cancel a 3% tax on the health insurance industry,” he says, referring to the current efforts of a major ad campaign by a coalition of small-business owners and insurance groups to get Congress to delay or cancel that ACA-linked tax.

Given how much money from health insurers is going into fighting that tax, he says, how likely is it that Congress — even one controlled by Democrats — would really “cancel the whole industry” by passing a “Medicare for All” bill?

Kaiser Health News is a nonprofit, editorially independent program of the Kaiser Family Foundation. KHN is not affiliated with Kaiser Permanente.

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Doctors are reporting the first evidence that genetically edited cells could offer a safe way to treat sickle cell disease, a devastating, incurable disorder that afflicts millions of peoplearound the world.

Billions of cells that were genetically modified with the powerful gene-editing technique called CRISPR have started working, as doctors had hoped, inside the body of the first sickle cell patient to receive the experimental treatment, according to highly anticipated data released Tuesday.

The edited cells are producing a crucial protein at levels that have already exceeded what doctors thought would be needed to alleviate the excruciating, life-threatening complications of the genetic blood disorder, the early data show. Moreover, the cells appear to have already started to spare the patient from the agonizing attacks of pain that are the hallmark of the disorder.

“We are very, very excited,” says Dr. Haydar Frangoul of the Sarah Cannon Research Institute in Nashville, Tenn., who is treating the patient. “This preliminary data shows for the first time that gene editing has actually helped a patient with sickle cell disease. This is definitely a huge deal.”

Frangoul and other researchers caution, however, that the results involve just one patient who was only recently treated. It is far too soon to answer the most crucial questions: Will the modified-cell treatment continue to improve the patient’s health? Will the treatment keep working? Will it help her live longer? Is it safe in the long term?

“We are hoping it is” a success, Frangoul says. But “it is still too early to celebrate.”

NPR has exclusive access to chronicle the experience of Frangoul’s patient, Victoria Gray of Forest, Miss., the first person with a genetic disease to be treated with CRISPR in the United States.

“So look at this,” Frangoul said recently with a smile, as he showed Gray her latest blood test results. The testing indicated that the genetically modified cells had already started producing the crucial protein at levels doctors hope will alleviate her suffering.

“I am super-excited about your results today,” Frangoul said.

While Gray knows it’s still very early, she described how the treatment appears to be helping her. She has not suffered any of the painful attacks that torture sickle cell patients and has not needed to rush to the hospital for care since getting the modified cells this summer. She has not needed any blood transfusions either and has begun to reduce the pain medication she had been taking chronically.

“It’s a miracle,” says Gray, who says she has hope for the first time after a lifetime of struggling with excruciating pain and debilitating, life-threatening complications of the disease. Sickle cell disease is an inherited condition that is marked by defective oxygen-carrying red blood cells.

“When you pray for something for so long, all you can have is hope,” says Gray, 34, who has four children. “It’s amazing.”

The early results of the research were released by the two companies sponsoring the study that Gray volunteered for, Vertex Pharmaceuticals in Boston and CRISPR Therapeutics in Cambridge, Mass.

“This is a very important scientific and medical milestone,” said Dr. Jeffrey Leiden, chairman, president and CEO of Vertex. “We have potentially cured this patient with a single treatment. We are very hopeful.”

While Gray experienced some complications after the treatment, she recovered, and none of the problems is believed to have been caused by the treatment itself, according to the companies.

“I think it’s enormously exciting that we’ve reached a point where gene editing using CRISPR is being applied to sickle cell disease,” says Dr. Francis Collins, director of the National Institutes of Health. Collins, who is not involved in the research, noted that sickle cell disease affects about 100,000 people in the United States and millions more worldwide.

“To be able to take this new technology and give those people a chance for a new life, which it really would be, is a dream come true,” Collins says.

Because of the promise of research like this, the National Institutes of Health is launching a $200 million partnership with the Bill & Melinda Gates Foundation to find ways within 10 years to make expensive, complicated gene-based treatments affordable and practical in poor countries, where diseases such as sickle cell are most common. (The Gates Foundation provides support for coverage of global health and development by NPR.)

“The progress that we’ve seen in gene-therapy approaches for sickle cell disease in the U.S., including Victoria Gray and her involvement in this gene-editing protocol, made it clear that it was time to get started on the next phase of this,” Collins said. “If this is starting to work — but wouldn’t work where most of the patients are, which is Africa — we need to get busy and take it to the next level.”

The companies conducting the sickle cell study had previously only disclosed that the first patient in the trial had been treated and that another patient with a related blood disorder, beta thalassemia, had undergone CRISPR treatment this year and had not needed a blood transfusion for four months.

That’s still true after nine months, according to the new data. The beta thalassemia patient, who was treated in Germany, has not been publicly identified. Typically, beta thalassemia patients need regular transfusions to survive. The CRISPR-treated patient normally needed more than 16 transfusions every year, according to the companies. That patient too experienced health problems after the treatment but also recovered, and none is believed to have been caused by the treatment.

“This is the first evidence that in people the new CRISPR technology has the potential to be curative for serious genetic diseases,” said Dr. David Altshuler, the chief scientific officer at Vertex.

“And this is just the beginning for this new type of therapy. Its applications can go beyond sickle cell disease and beta thalassemia to other genetic diseases.”

Many researchers think CRISPR could revolutionize medicine. The technique enables scientists to make very precise changes in DNA much more easily than ever before.

Doctors are also trying to use CRISPR to treat cancer. Most of that research is happening in China, and almost none of the results have been reported. But the University of Pennsylvania, which has tried CRISPR on three cancer patients, recently reported that gene editing appears feasible and safe. Another study recently started recruiting cancer patients in the U.S. and Australia.

Later this year, doctors in Boston are planning to use CRISPR for the first time to edit cells while they are still inside patients’ bodies — in retinas — in hopes of restoring vision in patients with an inherited form of blindness.

When NPR interviewed Gray most recently, she had just driven five hours back to Nashville after spending about a month at home in Mississippi with her family. She had been in Nashville for about three months over the summer to undergo the procedure on July 2 and then recover from the treatment, which required the equivalent of a bone marrow transplant.

During the return visit, Gray wore a black hooded sweatshirt emblazoned with the word “warrior” across the front.

“You know, they call sickle cell patients warriors, and I saw this shirt at Walmart so I had to get it,” Gray says. “It’s a constant battle.”

Sickle cell disease is a cruel genetic disorder that deforms red blood cells into defective sickle-shaped cells. The cells jam up the bloodstream, damaging vital organs and causing myriad health problems, in addition to the bouts of intense pain. Many patients with the disease can’t work or go to school. Many die before reaching middle age from complications such as heart attacks and strokes.

“I had moments where I was just standing, laughing [and] talking with friends, and then the next thing you know, my husband had to carry me into the emergency room because I couldn’t use my legs because they hurt so bad,” says Gray, who has already suffered heart damage from her disease.

“And when you can’t help yourself, it’s just one of those things that just make you want to give up,” she says, her voice cracking with emotion.

Before Gray saw Frangoul, nurses at TriStar Centennial Medical Center took 16 vials of blood from her for tests as part of the clinical trial. The study is designed to eventually involve 45 patients in the United States, Canada and Europe. The beta thalassemia trial is designed to eventually involve 45 patients in Canada, Germany and London.

As the nurses filled one big blood tube after another, Gray described her homecoming a few weeks earlier.

“My oldest son — when he did his double take and realized I was in the car — he took off running, and he just grabbed me and held onto me. And the twins saw me from inside the house. My mama said that my daughter was, ‘My mama’s outside.’ She was just jumping. They knew it was Mama,” she says. “It’s emotional for me, you know, because I love them so much. I did this for them. So, it’s worth it.”

After Gray was done giving her blood sample, she met with Frangoul, who gave her a brief physical exam before showing her a sheet of paper with her latest test results.

“It looks like there are signs that you are starting to make fetal hemoglobin, which is very exciting,” Frangoul said.

Fetal hemoglobin is a protein that is normally produced only by fetuses and newborn babies for a short time after birth. So scientists used CRISPR to edit a gene in bone marrow cells that had been removed from Gray’s body.

The edited cells were infused back into her system, and the editing change allowed the cells to start producing fetal hemoglobin again. The hope is that the fetal hemoglobin will compensate for the genetic defect that has resulted in sickle cell disease and its abnormal form of adult hemoglobin.

The edited cells began functioning about a month after being infused into Gray’s body. Four months after Gray received the cells, her blood tests show that 46.6% of the hemoglobin in her system is fetal hemoglobin, according to the companies. That far exceeds the 20% to 30% that doctors thought would be needed to help her. And her fetal hemoglobin levels are still rising, Frangoul said in an interview. In addition, 94.7% of Gray’s red blood cells contain fetal hemoglobin, the companies reported.

Gray suffered a blood infection, gallstones and abdominal pain after the grueling procedure, which involved the equivalent of a bone marrow transplant. The beta thalassemia patient developed pneumonia and a liver problem. But none of those complications is believed to have been caused by the edited cells, the companies said.

Other researchers are testing another approach for sickle cell that involves using a virus to insert a healthy gene into sickle cell patients’ cells. That approach is also showing promise. Scientists are also planning to try to use CRISPR to correct the defective gene itself, which would be more difficult.

Frangoul stresses that it’s too soon to know if the fetal hemoglobin production will continue and how it might help Gray’s health over a longer period of time.

“I just want to make sure this is something we watch very carefully every visit and see how things are going,” he told Gray.

But Frangoul, medical director of pediatric hematology/oncology at HCA Healthcare’s TriStar Centennial Medical Center, knows Gray has been feeling better.

“You haven’t been in the hospital since I last saw you, correct?” he said. “No emergency rooms, no hospitals. How about that? That’s good. Excellent. Perfect. This is extremely encouraging.”

While Frangoul says some sickle cell patients can go for extended periods without severe attacks of pain, Gray says that normally she would have suffered some kind of episode in the period since she received the edited cells. In the two years before the treatment, Gray had experienced seven sickle cell crises a year.

“It’s special, especially coming up on the holidays, because sometimes I would be in the hospital on Christmas. And so I’m looking forward to a whole new life for all of us,” she said.

Gray calls edited cells her “supercells.”

“They seem to be super after all,” Gray said, laughing.

Frangoul plans to follow Gray for many more months to see if her “supercells” are really making her healthier, and for even longer to see if they help her live longer. Researchers plan to check up on Gray and other study subjects for 15 years to make sure the cells are not causing any long-term side effects of their own.

“This would be life-changing, not only for Victoria but for many sickle cell patients,” Frangoul said. “If this is determined to be safe and effective, I think it can be transformative for patients with sickle cell disease.”

Before the treatment, Gray was so weak from her disease that she couldn’t work or go to school and hadn’t been able to participate in many of her children’s activities.

Since the treatment, she felt strong enough to go to one of her son’s football games for the first time. She hopes that maybe now she’ll be able to spend a lot more time with her kids and see them grow up.

“I don’t really want anything extravagant,” Gray said. “I just want a simple life with my family and the people who I love and people that love me, and just live, you know? This could be the beginning of something special.”

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Over the past few years, abortion providers in Texas have struggled to reopen clinics that had closed because of restrictive state laws.

There were more than 40 clinics providing abortion in Texas on July 12, 2013 — the day lawmakers approved tough new restrictions and rules for clinics.

Even though abortion providers fought those restrictions all the way up to the U.S. Supreme Court, and managed to get the restrictions overturned in 2016, most of the affected clinics remain closed.

Today, there are just 22 open clinics in a state that is home to 29 million people.

Although abortion providers won the legal battle, they appear to be losing the ground war. Most clinics are clustered in the major cities of Dallas, Houston and Austin, while women who live in smaller cities and towns that once had clinics now have to travel long distances to get an abortion.

The town of San Angelo, for example, once had a Planned Parenthood clinic, but it had to close in 2013. It had been one of the last abortion providers in West Texas, a sprawling, dry and mostly rural region where most residents must drive at least three hours to reach a major city.

Susanne Fernandez, who worked at the San Angelo clinic for almost 30 years, gets emotional talking about its closure. “I loved working for Planned Parenthood.”

Fernandez blames the closure on the 2013 state law, known as House Bill 2, which required abortion clinics to have the same sort of equipment, standards and staffing as surgical centers — and also required the doctors performing abortions to obtain admitting privileges at a nearby hospital. She says complying with those rules would have been extremely difficult and expensive. Still, the decision to close the San Angelo clinic was tough.

“The last day was sad. It was somber,” Fernandez says. “We did a lot of cleaning up. We all knew that was it.”

Abortion providers in Texas eventually sued the state. But as the legal challenge worked its way through the courts, many of the clinics were forced to stop providing services.

At one point, Texas had only 17 clinics, says Kari White, an investigator with the Texas Policy Evaluation Project at the University of Texas, Austin. She says women living in rural Texas were affected the most.

“What we saw is that [in] West Texas and South Texas, access was incredibly limited,” White says, “and women living in those parts of the state were more than 100 miles — sometimes 200 or more miles — from the nearest facility.”

White’s research team conducted surveys and interviews with women who were seeking abortions as clinics were shutting down. A 19-year-old woman told the researchers she considered giving up because it was so hard to find an open clinic.

“It was a very hard thing to do, like to keep calling and calling and calling,” the woman told researchers. “I almost was like, you know, ‘Well, forget it.’ … But then, because I knew at the end of the day it was something that I had to do, it was like I don’t care how many people I have to call or how far I have to go. I have to do it.”

That woman eventually found a clinic 70 miles away and was able to get the abortion. But in some other cases, women had to carry unwanted pregnancies to term.

Under Texas law, women have to have two appointments with an abortion provider. After an initial appointment at a clinic, the women must wait 24 hours before getting the procedure. That means they often have to make a long trip at least twice, or pay for a hotel nearby. The waiting period is only waived if a woman lives more than 100 miles away from the closest clinic.

One 23-year-old woman from Waco, a married mother of two, told researchers she made appointments to get an abortion at two different clinics. But both appointments were canceled after the clinics were forced to close. She was unable to end the pregnancy.

“I was pretty upset, but I just decided that I guess I’ll have to just ride it out,” she told researchers. “I didn’t know what else to do, who else to call.”

Eventually, in the summer of 2016 — three years after H.B. 2 passed — the U.S. Supreme Court struck down the tough new restrictions on clinics. But most of the clinics never reopened.

“There hasn’t been this rush of clinics reopening following the Supreme Court decision,” White says. “So there are still just clinics concentrated in the major metropolitan areas of Texas.”

The ruling has also been a mixed bag for anti-abortion activists, says John Seago, the legislative director for Texas Right to Life.

“The closures of clinics is definitely a victory for the movement, obviously,” he says. “However, how are we in this situation in the first place is what my organization looks at.”

Seago says anti-abortion activists in Texas are in this situation because of Roe v. Wade, the Supreme Court case that made abortion legal in the U.S. He says it’s the reason anti-abortion activists fight legal battles on the state level in an effort to reverse Roe.

Seago says the Supreme Court ruling on Texas’ law was a big blow to the larger goal of slowly dismantling Roe.

Some new options in recent years

Over the past three years, a few abortion providers have decided to open clinics in Texas.

For example, earlier this year Kathy Kleinfeld opened a new abortion clinic in Houston — a city that already has a few clinics providing abortion.

Kleinfeld, a longtime consultant for abortion providers in Texas and other states, decided to open in Houston after carefully looking at the demand for services in that region. Her clinic provides medical abortions using pills, but not surgical abortions.

“Due to the closure of so many clinics, the remaining clinics that are open are very busy, and they are very strict in the scheduling,” Kleinfeld says. “So our goal was to offer flexibility in scheduling.”

Kleinfeld says her clinic could help take some pressure off the remaining clinics in Houston. She says so far her patients have been professionals, students and women who drive over from Louisiana.

But she emphasizes that getting her clinic up and running was not easy, despite her intimate knowledge of the complex rules and mandatory paperwork and the surprise inspections involved in operating as a licensed abortion provider in the state of Texas.

Kleinfeld predicts that opening, running and keeping a clinic open will always be difficult in Texas.

“There’s always been volatility and conflict and struggles,” she says. “Always. And this is not for the faint of heart.”

Andrea Ferrigno agrees with that assessment. As the corporate vice president of Whole Woman’s Health, Ferrigno helps operate several clinics that offer abortion in Texas.

She recalls that after H.B. 2 passed in 2013, Whole Woman’s Health was forced to close two clinics — one in Austin and another in Beaumont, a small city near the Louisiana border. So far, Whole Woman’s Health has only been able to reopen the Austin clinic.

“It’s basically starting from scratch,” Ferrigno says. “You laid off the staff, you don’t have any physicians that work there anymore. Some of the doctors didn’t even renew their physician licenses.”

Ferrigno says clinics that closed may have lost the required state-issued license needed to operate in Texas. Applying for a new one is a significant bureaucratic hurdle. Some clinics might have lost their leases, been forced to vacate their buildings, and sell off equipment.

“There are a lot of different limitations,” she says. “There’s also the question of — or the fear of — security challenges. People picketing the clinic, picketing their homes. There’s a lot that goes into that.”

But the cost of not reopening — particularly in a community that had only one clinic to begin with — may be high.

Take San Angelo, for example: Fernandez says she doubts there will be a clinic offering abortions opening in her town anytime soon. She sometimes wonders what happened to the women she used to help.

“Where did these women go? Where do they go now?” Fernandez says. “I don’t believe a lot of them found any other health care afterward.”

This story comes from NPR’s reporting partnership with KUT and Kaiser Health News.

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