The Environmental Protection Agency rule would many products that contain perfluoroalkyl and polyfluoroalkyl substances. They’re a family of chemicals that don’t degrade in nature and have been linked to cancer, birth defects, and hormone irregularities.

Companies would have to disclose any PFAS that have been manufactured or imported between 2011 and when the rule takes effect, with no exemptions for small businesses or for impurities or byproducts cross-contaminating goods with PFAS. Those disclosures would be available to the public, barring any trade secrets linked to the data. The EPA will finalize the rule in the coming months, agency spokesperson Catherine Milbourn said, then require companies to report back within 12 months.

The effort excludes pesticides, foods and food additives, drugs, cosmetics, and medical devices regulated under the Federal Food, Drug, and Cosmetic Act, Milbourn said. It also is essentially a one-time reporting and record-keeping requirement — and companies wouldn’t need to provide updates.

Still, the chemical and semiconductor industries are grumbling about what the EPA estimated is a to comply with the rule. The U.S. chemical industry says it generates .

On the other side, environmental health activists say the data collection exercise would be flawed, as it accounts for only a tenth of PFAS chemicals, which are used in everything from nonstick cookware to kids’ school uniforms. Moreover, they say, it wouldn’t stop PFAS from making their way into the air, waste, or consumer products, nor would it clean up existing contamination.

Congress gave the EPA the power to track PFAS chemicals in 2016, when it revised the Toxic Substances Control Act. Then a , which President Donald Trump signed into law, called for the EPA to inventory PFAS. However, health activists warn that unless Congress overhauls U.S. chemical laws to give the EPA and other agencies more power, PFAS will continue to threaten humans and the environment.

These so-called forever chemicals went from marvel to bête noire in just 50 years. When PFAS debuted, they were revered for making Teflon pans nonstick and Gore-Tex jackets waterproof. They are effective at repelling water and oil yet so durable they don’t break down in the natural environment. That strength has become their downfall, as the chemicals accumulate in landfills, soil, drinking water supplies, and, ultimately, human bodies. As scientists learn more about PFAS’ toxic nature, governments around the world have set limits or imposed outright bans.

Because PFAS are found in thousands of products — , cosmetics, , paper plates, clothing, and dental floss, to name just a few — regulators are scrambling to gather data on the scope of the PFAS threat. The EPA data collection proposal is a move in that direction.

Milbourn told �������ýҕ�l Health News that 1,364 types of PFAS may be covered by the rule, and EPA officials are reviewing public comments they received to determine whether they should modify its scope to capture additional substances.

By contrast, the European Union is discussing banning or limiting , according to Hanna-Kaisa Torkkeli, a spokesperson for the European Chemicals Agency.

“In the U.S., chemicals are innocent until proven guilty,” said , director of science policy at Public Employees for Environmental Responsibility, a nonprofit based outside Washington, D.C. “In the EU and Japan, chemicals are guilty until proven safe — and that’s why they have fewer PFAS.”

That lack of regulation in the U.S. is driving states to take matters into their own hands, pursuing PFAS bans as gridlock and in Washington thwart tougher federal laws. Minnesota’s limits the chemicals in menstrual products, cleaning ingredients, cookware, and dental floss. Maine’s law will . and ban PFAS in food packaging.

“The states are acting because our federal system doesn’t currently allow the government to say ‘no more use of PFAS,’” said , director of the federal policy program at Toxic-Free Future, a national advocacy group. “And even if it did, that wouldn’t clean up the mess already made.”

U.S. courts are also weighing in on PFAS contamination. On June 22, 3M up to $12.5 billion to settle lawsuits by communities around the country that argued their drinking water was contaminated by the company’s PFAS-containing products.

Additionally, the U.S. military is , after said more than 600,000 troops were in drinking water contaminated largely by PFAS-laden .

Just cleaning up PFAS waste could cost at least $10 billion. Removing it from U.S. drinking water supplies more than $3.2 billion annually to the bill, according to a report commissioned by the American Water Works Association.

“The CDC estimates that 99% of Americans have PFAS in their blood,” said , vice president of government affairs for the Environmental Working Group, a nonprofit that researches the ingredients in household and consumer products. “We estimate that 200 million Americans are exposed to PFAS in their drinking water right now.”

Officials with the U.S. Geological Survey released a similar finding that the agency’s researchers estimate more than 45% of U.S. tap water is contaminated with at least one PFAS chemical after they conducted a nationwide study of water samples.

As ubiquitous as PFAS are, the reason they haven’t generated more outrage among the public may be that the damage from PFAS chemicals isn’t immediate. They affect health over time, with repeated exposure.

“People aren’t getting headaches or coughing from exposure to PFAS,” Bennett said. “But they are getting cancer a few years down the line — and they don’t understand why.”

Some environmental health advocates, such as Arthur Bowman III, policy director at the , say the EPA’s data collection project could help. “It will be fairly straightforward for the EPA to gather PFAS information on cleaning products and other wet chemicals that contain PFAS,” Bowman said. “And this will lead to phaseouts of PFAS.”

Some retailers, such as and , have recently announced plans to remove the chemicals from many of their products.

But Bowman said it will be more difficult for manufacturers to remove PFAS used in the production of semiconductor chips and printed circuit boards, since alternative products are still in the research phase.

The Semiconductor Industry Association to the proposed reporting requirements because, it maintains, semiconductor manufacturing is so complex that it would be “impossible, even with an unlimited amount of time and resources, to discern the presence (if any) of PFAS in such articles.” Other industries have also asked for waivers.

The American Chemistry Council, which represents large PFAS manufacturers such as 3M, disagrees with those calling for the entire class of PFAS chemicals to be banned. “Individual chemistries have their own unique properties and uses, as well as environmental and health profiles,” said Tom Flanagin, a spokesperson for the trade group.

While the council’s member companies “support strong, science-based regulations of PFAS chemistries that are protective of human health and the environment,” Flanagin said, the rules shouldn’t harm economic growth “or hamper businesses and consumers from accessing the products they need.”

For their part, some environmental advocates welcome the reporting proposal, expecting it to reveal new and surprising uses of PFAS. “However, it’s going to be a snapshot,” said , the senior toxics policy adviser for the Sierra Club.

Lunder said even if PFAS were found in, for example, brands of baby bibs, pesticide containers, or pet food bags, it isn’t clear which federal agency would regulate the products. She said Americans should demand that Congress add PFAS and other harmful chemicals to all major environmental statutes for water, air, food, and consumer products.

And another worry: If the data does make it into the mainstream, will consumers simply tune it out — just as many do with ? Lunder doesn’t think so, since “the audience is scientists, regulators, and — for better or for worse — tort attorneys.”

Benesh, of the Environmental Working Group, said the disclosures could reach further and “embolden consumers to demand even more market change.”

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Sadé Lewis of Queens, New York, has suffered migraines since she was a kid, and as she started college, they got worse. A recent change in her insurance left the 27-year-old looking for a new neurologist. That’s when she found in New York.

MedicalArts recommended that she get an electroencephalogram (EEG) and an MRI to make sure her brain was functioning properly.

An EEG is a test to measure the electrical activity of the brain. It can find changes in brain activity that can help in diagnosing conditions including epilepsy, sleep disorders, and brain tumors. During the procedure, electrodes consisting of small metal discs with attached wires are pasted onto the scalp using adhesive, or attached to an electrode cap that you wear on your head.

A little over a week before her EEG, Lewis was given instructions that she didn’t remember getting before a previous EEG appointment.

To Lewis’ surprise, patients were told to remove all hair extensions, braids, cornrows, wigs, etc. Also, she was to wash her hair with a mild shampoo the night before the appointment and not use any conditioners, hair creams, sprays, oils, or styling gels.

“The first thing I literally did was text it to my best friend, and I was, like, this is kind of anti-Black,” Lewis said. “I just feel like it creates a bunch of confusion, and it alienates patients who obviously need these procedures done.”

The restrictions could discourage people with thick, curly, and textured hair from going forward with their care. People with more permanent styles like locs — a hairstyle in which hair strands are coiled, braided, twisted, or palm-rolled to create a rope-like appearance — might be barred from getting the test done.

Kinky or curly hair textures are and susceptible to damage. As a result, people with curlier hair textures often wear protective hairstyles, such as weaves, braids, and twists, which help maintain hair length and health by keeping the ends of the hair tucked away and minimizing manipulation.

After receiving the instructions, Lewis scoured the internet and social media channels to see if she could find more information on best practices. But she noticed that for people with thick and textured hair, there were few tips on best hairstyles for an EEG.

Lewis has thick, curly hair and believed that explicitly following the instructions on the preparation worksheet would make it harder, not easier, for the technician to reach her scalp. Lewis decided that her mini-twists — a protective style in which the hair is parted into small sections and twisted — would be the best way for her to show up to the appointment with clean and product-free hair that still allowed for easy access to her scalp.

Lewis felt comfortable with her plan and did not think about it again until she received a reminder email the day before her EEG and MRI appointment that restated the restrictive instructions and added a warning: Failure to comply would result in the appointment being rescheduled and a $50 same-day cancellation fee.

To avoid the penalty, Lewis emailed the facility with her concerns and attached photos.

“I got kind of worried, and I sent them pictures of my hair thinking that it would go well, and they would be, like, ‘Oh yeah, that’s fine. We see what you see,’” said Lewis.

Soon after, she received a call from the facility and was told she would not be able to get the procedure done with her hair in the twists. After the call, Lewis posted a detailing the conversation. She expressed her frustration and felt that the person on the phone was “close-minded.”

“As a Black woman, that is so exclusionary for coarse and thick hair. To literally have no product in your hair and show up with it loose, you’re not even reaching my scalp with that,” Lewis said in her video.

The comments section on Lewis’ TikTok video is full of people sharing in her frustration and confusion or recounting similar experiences with EEG scheduling.

West 14 Street MedicalArts declined to comment for this article.

The New York medical center is not the only facility with similar EEG prep instructions. , which has several locations in the Washington, D.C., area, provides EEG for patients reading, “Please remove any hair extensions or additions. Do not use hair treatment products such as hair spray, conditioners, or hair dressing, nor should you fix your hair in tight braids or corn rows.”

Marc Hanna, the neurophysiology supervisor at the center’s White Oak location in Silver Spring, Maryland, has more than 30 years of experience performing EEGs. He oversees 10-12 EEG technicians at the facility.

Hanna said the hair rules are meant to help a technician get an accurate reading from the test. “The electrodes need to sit flat on the scalp, and they need to be in precise spots on the scalp that are equally apart from each other,” Hanna said.

For people with thick and curly hair, this can be a challenge.

A from Science News detailed a study that measured how much coarse, curly hair could interfere with measuring brain signals. A good EEG signal is considered to have less than 50 kilo-Ohms of impedance, but the researchers found unbraided, curly hair with standard electrodes yielded 615 kilo-Ohms.

Researchers are working to better capture brain waves of people with naturally thick and curly hair. , a biomedical engineering major at the University of Miami, developed a clip-like device that can help electrodes better adhere to the scalp.

Experimentation with different braiding patterns and flexible electrode clips shaped like dragonfly wings, designed to push under the braids, has had promising results. A study, published by bioRxiv, found this method resulted in a reading well measurement.

But more research has to be done before products like these are widely used by medical facilities.

Hanna said the facility where he works does not automatically ask patients to remove their protective styles because sometimes the technician can complete the test without them doing so.

“Each one of those cases are an individual case,” Hanna said. “So, at our facility, we don’t ask the patient to take all their braids out. We just ask them to come in. Sometimes, if one of the technicians are available when the patient is scheduling, they’ll just look at the hair and say, ‘OK, we can do it’ or ‘We don’t think we can do it.’ And we even might say, ‘We don’t think we can do it but come in and we’ll try.’”

In practice, Hanna said, it’s not common for hair to be an issue. But for patients whose hairstyle might make the test inaccurate, he said, it becomes a conversation between the doctor and the patient.

When Lewis arrived the following day for her MRI and EEG appointment, she was told her EEG had been canceled.

“It was just kind of baffling a little bit because, literally, as soon as I walk in, I saw about four different Black women who all had either twists, locs, braids, or something,” she said. “And on the call, the woman was saying if you come in and my hair is not loose, we’re going to charge you. And she did recommend to cancel my appointment. But I never approved that.”

After Lewis explained what happened during the phone call, she said, the receptionist was very apologetic and said the information Lewis was given was not true. Lewis said she spoke with one of the EEG technicians at the facility to confirm that her mini-twists would work for the test — and felt a sigh of relief when she saw the technician was also a Black woman.

“The technician, I think overall, they just made me feel safe,” Lewis said. “Because I felt like they could identify with me just from a cultural standpoint, a racial standpoint. So, it did make me feel a little bit more valid in my feelings.”

Lewis later returned to the facility to get the procedure done while still wearing mini-twists. This time, the process was seamless.

Her advice for other patients? “When you feel something, definitely speak out, ask questions.”

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The office in Miami where she scheduled what’s known as a Brazilian butt lift had closed and transferred her records to a different facility, she said. The price she was quoted — and paid upfront — increased the day of the procedure, and she said she did not meet her surgeon until she was about to be placed under general anesthesia.

“I was ready to walk out,” said Ruston, 44, of Lake Alfred in Central Florida. “But I had paid everything.”

A few days after the July procedure, Ruston was hospitalized due to infection, blood loss, and nausea, her medical records show.

“I went cheap. That’s what I did,” Ruston recalled recently. “I looked for the lowest price, and I found him on Instagram.”

People like Ruston are commonly lured to office-based surgery centers in South Florida through social media marketing that makes Brazilian butt lifts and other cosmetic surgery look deceptively painless, safe, and affordable, say researchers, patient advocates, and surgeon groups.

Unlike ambulatory surgery centers and hospitals, where a patient might stay overnight for observation after treatment, office-based surgery centers offer procedures that don’t typically require an inpatient stay and are regulated as an extension of a doctor’s private practice.

But such surgical offices are often owned by corporations that can offer discount prices by contracting with surgeons who are incentivized to work on as many patients per day as possible, in as little time as possible, according to state regulators and physicians critical of the facilities.

Ruston said she now lives with constant pain, but for other patients a Brazilian butt lift cost them their lives. After a rash of deaths, and in the absence of national standards, Florida regulators were the first in the nation to enact meant to make the procedures safer. More than three years later, data shows .

Patient advocates and some surgeons — including those who perform the procedure themselves — anticipate the problem will only get worse. imposed by the state’s medical board in June expired in September, and the corporate business model popularized in Miami is spreading to other cities.

“We’re seeing entities that have a strong footprint in low-cost, high-volume cosmetic surgery, based in South Florida, manifesting in other parts of the country,” said , a vice president of the American Society of Plastic Surgeons and a practicing physician in Houston.

During a Brazilian butt lift, fat is taken via liposuction from other areas of the body — such as the torso, back, or thighs — and injected into the buttocks. More than 61,000 buttock augmentation procedures, both butt lifts and implants, were performed nationwide in 2021, a 37% increase from the previous year, from the Aesthetic Society, a trade group of plastic surgeons.

As with all surgery, complications can occur. Miami-Dade County’s medical examiner has documented nearly three dozen cosmetic surgery patient deaths since 2009, of which 26 resulted from a Brazilian butt lift. In each case, the person died from a pulmonary fat embolism, when fat entered the bloodstream through veins in the gluteal muscles and stopped blood from flowing to the lungs.

No national reporting system nor insurance code tracks outcomes and patient demographics for a Brazilian butt lift. About 3% of surgeons worldwide had a patient die as a result of the procedure, according to a from an Aesthetic Surgery Education and Research Foundation task force.

Medical experts said the problem is driven, in part, by having medical professionals like physician assistants and nurse practitioners perform key parts of the butt lift instead of doctors. It’s also driven by a business model that is motivated by profit, not safety, and incentivizes surgeons to exceed the number of surgeries outlined in their contracts.

In May, after a fifth patient in as many months died of complications in Miami-Dade County, Dr. Kevin Cairns proposed the state’s emergency rule to limit the number of butt lifts a surgeon could perform each day.

“I was getting sick of reading about women dying and seeing cases come before the board,” said Cairns, a physician and former member of the Florida Board of Medicine.

Some doctors performed as many as seven, according to disciplinary cases against surgeons prosecuted by the Florida Department of Health. The emergency rule limited them to no more than three, and required the use of an ultrasound to help surgeons lower the risk of a pulmonary fat clot.

But a group of physicians who perform Brazilian butt lifts in South Florida clapped back and formed . They argued the new requirements would make the situation worse. Qualified doctors would have to do fewer procedures, they said, thus driving patients to dangerous medical professionals who don’t follow rules.

The group has since donated more than $350,000 to the state’s Republican Party, Republican candidates, and Republican political action committees, according to campaign contribution data from the Florida Department of State.

Surgeons for Safety declined KHN’s repeated interview requests. Although the group’s president, , wrote in that he agreed not all surgeons have followed the standard of care, he called the limits put on surgeons “arbitrary.” The rule sets “a historic precedent of controlling surgeons,” he said during a meeting with Florida’s medical board.

In January, Florida state Sen. Ileana Garcia, a Republican, filed a that proposes no limit on the number of Brazilian butt lifts a surgeon can perform in a day. Instead, it requires office surgery centers where the procedures are performed to staff one physician per patient and prohibits surgeons from working on more than one person at a time.

The bill would also allow surgeons to delegate some parts of the procedure to other clinicians under their direct supervision, and the surgeon must use an ultrasound.

Florida’s legislature convenes on March 7.

Consumers considering cosmetic procedures are urged to be cautious. Like Ruston, many people base their expectations on before-and-after photos and marketing videos posted on social media platforms such as Facebook, Snapchat, and Instagram.

“That’s very dangerous,” said Basu, of the American Society of Plastic Surgeons. “They’re excited about a low price and they forget about doing their homework,” he said.

The average price of a buttocks augmentation in 2021 was $4,000, according to data from the Aesthetic Society. But that’s only for the physician’s fee and does not cover anesthesia, operating room fees, prescriptions, or other expenses. A “safe” Brazilian butt lift, performed in an accredited facility and with proper aftercare, costs between $12,000 and $18,000, according to a on the American Society of Plastic Surgeons’ website.

Although Florida requires a physician’s license to perform liposuction on patients who are under general anesthesia, it’s common in the medical field for midlevel medical practitioners, such as physician assistants and nurse practitioners, to do the procedure in office settings, according to , who co-authored the 2017 Aesthetic Surgery Education and Research Foundation task force study.

By relying on staffers who don’t have the same specialty training and get paid less, office-based surgeons can complete more butt lifts per day and charge a lower price.

“They’re doing all of them simultaneously in three or four different rooms, and it’s being staffed by one surgeon,” said Mofid, a plastic surgeon in San Diego, who added that he does not perform more than one Brazilian butt lift in a day. “The surgeon isn’t doing the actual case. It’s assistants.”

Basu said patients should ask whether their doctor holds privileges to perform the same procedure at a hospital or ambulatory surgery center, which have stricter rules than office surgery centers in terms of who can perform butt lifts and how they should be done.

People in search of bargains are reminded that cosmetic surgery can have other beyond the deadly fat clots, such as infection and organ puncture, plus problems with the kidneys, heart, and lungs.

Ruston’s surgery was performed by a board-certified plastic surgeon she said she found on Instagram. She was originally quoted $4,995, which she said she paid in full before surgery. But when she arrived in Miami, she said, the clinic tacked on fees for liposuction and for post-surgical garments and devices.

“I ended up having to pay, like, $8,000,” Ruston said. A few days after Ruston returned home to Lake Alfred, she said, she started to feel dizzy and weak and called 911.

Paramedics took her to an emergency room, where doctors diagnosed her with anemia due to blood loss, and blood and abdominal infections, her medical records show.

“If I could go back in time,” she said, “I wouldn’t have had it done.”

KHN’s Chaseedaw Giles contributed to this report.

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“I immediately called my mom and said, ‘Mom, is it possible that I have random siblings out there somewhere?'” said Woock, of Indianapolis. She recalled her mom responded, “No, why? That’s ridiculous.”

But the messages continued, and some of them mentioned an Indianapolis fertility practice that she knew her mom had consulted when she had trouble conceiving.

Woock researched and finally learned the truth. Dr. Donald Cline, the fertility doctor her mother saw in 1985, is her biological father.

“I went through an identity crisis,” she said. “I couldn’t look in the mirror and think about, ‘Where did my eyes come from? Where did my hair color come from?’ I didn’t even want to think about any of that.”

Woock hadn’t known that her mom had used artificial insemination to conceive her, and neither of them knew the doctor had used his own sperm.

“We now know Cline used his own sample and squirted it into my mom,” Woock said.

In the 1970s and ’80s, Cline deceived dozens of patients and used his sperm to impregnate them. He has more than 60 biological children — and counting.

For Woock, as the story of her parentage sunk in, it was distressing for another reason: She wanted to start her own family and was having trouble conceiving. And now she needed to turn to the fertility industry that had so badly betrayed her mom.

“We were doing all of the calendaring … everything that is out there to help you get pregnant, we were doing that,” Woock recalled.

But after six months, when she still wasn’t pregnant at 32, she went to a fertility clinic for some tests.

“I had to fill out all this paperwork, and there’s a slot that says kind of like, ‘Is there anything else you’d like to share?’ ” Woock said.

Yes, there most certainly was.

The Odds Of ‘Fertility Fraud’ These Days

New allegations of doctors using their own sperm keep coming to light — because of genetic-testing services like Ancestry revealing networks of half siblings — in states like , Ohio, Colorado and Arkansas.

But those doctors performed artificial inseminations decades ago. Could what happened to Woock’s mom happen in a modern fertility clinic?

Dr. Bob Colver, a fertility specialist in Carmel, Indiana, said it’s a question many of his patients have asked. But it’s unlikely, he said. These days, there are more people involved in the process, and in vitro fertilization happens in a lab, not an exam room.

“Unless you’re in a small clinic where there’s absolutely no checks and balances, I can’t even imagine that today,” Colver said.

It’s now illegal in�� for a doctor to use his sperm to impregnate his patients. But there’s no national law criminalizing what’s called “fertility fraud.”

Fertility medicine has advanced a lot since the 1980s, but women trying to get pregnant today with the help of medicine face a baffling array of treatment options that can be hard to navigate and can be hugely expensive. And some critics say the growing, multibillion-dollar fertility industry needs more regulation.

For example, sperm banks may not get accurate medical histories from their donors, who could pass along genetic diseases. And there’s no limit on how many times a donor’s sperm can be used, which some donor children worry could increase the chance of inbreeding. Sperm donation guidelines from organizations like the American Society for Reproductive Medicine are voluntary. There was a contestant on�� last year who said his sperm had helped father more than 100 kids.

Unrealistic Expectations

When Woock decided to get her first fertility treatment, she set preconditions with the clinic. She insisted on having a female doctor and insisted that a doctor be in the room for all appointments and oversee everything that happened.

Her experience with her clinic was very different from her mother’s with Cline, but nonetheless there were surprises along the way.

The clinic told her that her problems conceiving could be because of husband Rob’s low sperm count and motility (meaning his sperm weren’t great swimmers). They advised a form of in vitro fertilization that involved injecting one sperm directly into one of her eggs in a petri dish.

When doctors told Woock she needed IVF, she felt pretty optimistic.

“I’m thinking going into this that our chances of success are 70, 75%,” Woock said.

Fertility treatment can be really expensive, and patients may start treatment with unrealistic expectations. That’s because success rates are complicated, and some clinics use only the best numbers in their��.

For example, clinics can advertise high fertilization rates. But a 70% fertilization rate doesn’t mean 70% of eggs turn into babies — plenty can go wrong after the lab combines egg and sperm.

Success depends on your age, your clinic and the type of procedure you need. But most of the time, assisted reproduction procedures such as IVF don’t work. The Centers for Disease Control and Prevention, which ��in the U.S., reports only about 24% of attempts result in a baby.

‘Add-On’ Technology — And Prices

When Woock started her first IVF cycle, she gave herself shots, a couple a day, to stimulate her ovaries to get multiple eggs ready at once. Multiple eggs means more chances for fertilization.

But the drugs have side effects. They gave her headaches and made her moody and less patient.

“I was actually allergic to one of the medications, which just means that you keep taking it and deal with the itching and rash,” Woock said.

But she hung on until it was time for a doctor to surgically retrieve her eggs, at which point patients can face even more choices. Because the couple’s fertility problem appeared to be with Rob’s sperm, the clinic offered to use a special device to help pick the best sperm for IVF.

“We were kind of like, ‘Yeah, why wouldn’t you?'” Woock said. “If it’s gonna give us a better chance, do it.”

A device like that is called an add-on. Add-ons are often new technology, described as cutting-edge, which can appeal to patients. Examples of add-ons include — which some specialists argue improves the odds of a live birth — and �����Ի���, both methods claiming to facilitate implantation.

Jack Wilkinson, a biostatistician at the University of Manchester in England, , which he has found can increase costs — and, he said, they may not work.

“We quite often see there’s no benefit at all,” Wilkinson said. “Or, possibly even worse, that there’s a disadvantage of using that treatment.”

Wilkinson said the device Woock’s clinic offered could work, but the evidence supporting it is thin.

Failed Fertilizations

The clinic called Woock the morning after her egg retrieval. None of Woock’s eggs fertilized. The procedure revealed that her husband’s sperm quality wasn’t the only fertility issue the couple faced.

“They immediately saw that there was something wrong with my eggs,” Woock said. “My eggs are just total crap.”

She underwent a second round of IVF with the same result — no fertilization.

“Getting that news the second time … felt even more set in stone that this was going to be a very long, challenging road,” Woock said.

Challenging and expensive. Most states, including Indiana, don’t require insurers to cover fertility treatment. Without insurance, a round of IVF can cost more than $10,000 — even more than $20,000 — with no guarantee the patient will get pregnant.

Woock was lucky that her employer-provided insurance covered a lot. But it still wasn’t cheap. She had to pay for some medications, “plus, you have to pay lab and facility fees that insurance doesn’t pay,” Woock said.

Donor sperm and eggs aren’t generally covered, either. Those can be tens of thousands of dollars.

Woock faced a hard choice: After two failed attempts, did she want a kid enough to go through IVF again? She and her husband decided they did. So Woock did a third round of IVF. And then a fourth. When that didn’t work, she gave up on using her own eggs.

“What I expected as I was growing up and picturing my children is not what I will see,” Woock said.

Woock and her husband decided to try donor eggs. If all goes according to plan, she could still carry a child. She wants to keep trying.

“I realize that pregnancy is incredibly challenging on your body and your mental state,” she said. “If I can make it through a year of IVF, I can make it through morning sickness.”

This story is part of a partnership that includes , and Kaiser Health News. The story was adapted from Episode 6 of the podcast . You can hear more about the fallout from Dr. Donald Cline’s deception on Sick’s first season, at��.

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The cost of health care looms as a major issue going into the 2020 campaign. But even as Democratic presidential candidates debate ways to bring down prices and expand insurance to more Americans, Democrats and Republicans in Congress are trying to pass legislation to address the price of prescription drugs and put an end to “surprise” out-of-network medical bills.

Chris Jennings and Lanhee Chen know about both. Jennings, president of Jennings Policy Strategies, has been a health adviser to Presidents Bill Clinton and Barack Obama. Lanhee Chen is a research fellow at the Hoover Institution and a director in the public policy program at Stanford University. He has advised Republican presidential candidates Mitt Romney, Marco Rubio and others.

This week’s panelists for KHN’s “What the Health?” — recorded at the Aspen Ideas: Health festival — are Julie Rovner of Kaiser Health News, Joanne Kenen of Politico and Margot Sanger-Katz of The New York Times.

Among the takeaways from this week’s podcast:

• The term “health care costs” means different things to different people. For most of the public, it refers to the amount they must pay out-of-pocket for premiums, deductibles and services. For policymakers, it often means the total amount the U.S. spends on the health care system. That often creates a disconnect.
• Even small changes to the way drugs are priced and ending surprise medical bills might end up satisfying many members of the public, although those adjustments might have a minimal effect on overall health spending.
• Republicans are as divided as Democrats on health care. That is the main reason Republicans did not repeal the Affordable Care Act in 2017 and why there has been no major Republican replacement proposal since then.
• Many of the Democrats running for president, meanwhile, continue to advocate for a “Medicare for All” program run by the government, although many are hedging their bets by supporting other, less sweeping proposals to expand coverage, as well.

To hear all our podcasts,��click here.

And subscribe to What the Health? on��,��,��,��, or .

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The report, presented Thursday both in Austin and Atlanta, where the CDC is headquartered, covers 87 days last fall in Austin when almost 200 people were injured in scooter crashes. Just one of the riders wore a helmet and 33% of those riders were hurt on their first scooter ride.

Austin city officials requested the CDC’s help in tracking injuries last spring as e-scooters started taking over the city. The investigators identified 271 individuals with potential e-scooter-related injury incidents during the study period last fall; of those, 190 confirmed an e-scooter riding-related injury. Most accidents occurred on streets. Most riders were men. Among the injured, 48% suffered a fracture, laceration or abrasion to the head; 70% injured upper limbs; and 55% injured lower limbs. Of the 190 riders, 35% suffered some type of fracture.

Despite injuries, 38% indicated they will use a scooter again.

“These injuries may have been preventable,” the study concludes. “Studies have shown that bicycle riders reduce the risk of head and brain injuries by wearing a helmet. Helmet use might also reduce the risk of head and brain injuries in the event of an e-scooter crash.”

With the increasing availability of scooters as an urban transit alternative, Austin and other cities around the world are trying to balance the safety and needs of scooter riders and the motorists, bicyclists and pedestrians who must navigate around them on sidewalks and streets. Some localities ban the scooters outright, while others try to control the number permitted or specify boundaries for use or places to park them. Dockless scooters arrived in Austin last April and quickly went from zero to more than 15,000 permitted as 10 companies were licensed to operate, according to the .

Although all those scooters aren’t out at once, the two companies with the most devices in Austin — Bird and Lime — each boast on their websites about availability in more than 100 cities around the globe. As those numbers continue to multiply, the CDC’s report will help shape how cities approach transportation policies, regulation and public safety.

Paul Saffo, who has spent more than 20 years exploring large-scale, long-term change, teaches forecasting at Stanford University. He said cities also need to consider a fundamental question about private use of public property.

“Scooters are lying around on sidewalks and being used by a private company making profit off use of the public infrastructure. The question is: Is the public being fairly compensated for the private use by a for-profit of a public infrastructure?” he said. “Whose right of way is it? The pedestrian annoyed by scooter is presumably a taxpayer. Who gets the privileged use of a public infrastructure?”

The CDC epidemiologists, collaborating with Austin Public Health and the city’s Transportation Department, arrived in Austin last December to examine scooter-related injuries from September to November, including interviewing the injured and studying their medical records to determine road conditions, weather, helmet use and other behaviors, such as alcohol use while riding.

The CDC’s Laurel Harduar Morano said, “We know we’re missing cases of injuries. These are the injuries severe enough to require emergency medical care.”

Among the findings, 55% of the injured riders identified as male. The median age was 29, although riders ranged in age from 9 to 79. Most injuries (55%) occurred in the street, while 33% were injured on the sidewalk.

The study also notes that findings don’t support the perception that scooter injuries are due to collisions with vehicles. But speed is a factor, the study suggests.

“While more than half of the interviewed riders were injured while riding a scooter in the street, just 10% of riders sustained injuries by colliding with a motor vehicle,” the study found. However, 37% of injured riders reported that excessive e-scooter speed contributed to their injury. And 29% of riders had consumed alcohol within the 12 hours preceding the scooter ride.

“Overall, 63% of the injured riders had ridden an e-scooter nine times or fewer before injury,” the study said.

“This study is a critical first step in cities adopting clear standards for safety that all operators must adhere to,” said Paul Steely White, Bird’s director of safety policy and advocacy. “There’s actionable information here for riders, operators and cities alike.” Bird, based in Santa Monica, Calif., turns its scooters off between midnight and 5 a.m. and limits the top speed to 15 mph.

Injuries, which are being recorded at hospitals and emergency rooms across the country, have resulted in fewer than a dozen fatalities nationwide — including one in Austin earlier this year. Two scooter riders died in March in California and two others were killed last month after being hit by cars in Fort Lauderdale, Fla., and Hollywood, Calif. Last week, a 5-year-old in Tulsa, Okla., was killed while riding a scooter with his mother, who escaped the vehicle collision with minor injuries.��

The University of Texas at Austin in March reduced scooter speeds from 15 mph to 8 mph — made possible through geofencing, which uses GPS technology to create a virtual boundary and enables scooter companies to adjust scooter speeds within a defined area, such as the university campus.

The Texas Senate on Wednesday approved a bill to regulate e-scooters statewide, including prohibiting them on sidewalks and at speeds over 15 mph, as well as setting 16 as the minimum age to ride. The measure now moves to the House for consideration.��

During the city’s South by Southwest Conference & Festivals in March, Austin Mayor Steve Adler appeared at a session about scooters and explained the challenges communities such as Austin face.

“It’s hard when you’re trying to figure out what to do and you look around for other examples,” he said. “You look to California and you learn that the best practice is to make sure that the scooters are not on sidewalks but are in the street — until you look to Denver and the best practice is to make sure that the scooter is on the sidewalks and out of the street.”

Saffo, the Stanford forecaster, said discussion now needs to be “where do scooters fit in this larger, ever more complex ecology of transportation options. People better sort out how they feel about scooters quickly because there’s a whole menagerie of others,” he said.

Urban planner Sarah Kaufman, associate director of the NYU Rudin Center for Transportation, said scooters present a safety issue for riders and pedestrians alike, and it’s up to cities to provide the right infrastructure, such as protected lanes or wider sidewalks.

��“At some point, cities have to change the streets to move away from cars as the main mode of travel,” Kaufman said. “We can’t change the design of our cities overnight, but when we think of the long-term plans we’re making, the car cannot be the dominant mode.”

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The program provides contraceptives, screening and treatment for sexually transmitted diseases and other primary health services to 4 million patients each year, many of them low-income or uninsured, at more than 4,000 clinic sites. Planned Parenthood serves about 40 percent of that caseload.

None of the funds provided for Title X services may be used for abortion. That has been true since the program was created in 1970. But abortion opponents have for decades complained that since many Planned Parenthood affiliates that receive Title X support also provide abortion, the federal family planning money can be improperly commingled with funds used for the procedure.

The erase previous program rules requiring that women with unintended pregnancies be given “nondirective counseling” on all options, including birth, adoption and abortion.

Under the new rules, Title X recipients would be banned from making abortion referrals in almost all cases. This would reverse existing rules, which require that a referral be given if a woman requests one. Counseling would still be allowed but no longer required.

The new rules “will ensure compliance with, and enhance implementation of, the statutory requirement that none of the funds appropriated for Title X may be used in programs where abortion is a method of family planning,” says the executive summary.

Organizations would also have to physically separate facilities that provide Title X-funded services from those that provide abortions.

Abortion-rights and family planning provider groups were quick to decry the regulations. Planned Parenthood called the new rules a dealbreaker.

“This is direct interference with the practice of medicine and our ethical obligations to our patients,” the organization’s president, Dr. Leana Wen, told reporters on a conference call Friday. “Planned Parenthood cannot participate in a program that would force our providers to compromise their ethics.”

Other family planning groups called the rules out as well.

“This rule intentionally strikes at the heart of the patient-provider relationship, inserting political ideology into a family planning visit, which will frustrate and ultimately discourage patients from seeking the health care they need,” Clare Coleman, president and CEO of the National Family Planning & Reproductive Health Association, the group that represents Title X recipients, said in a statement.

The American Medical Association said, “The patient-physician relationship relies on trust, open conversation and informed decision making and the government should not be telling physicians what they can and cannot say to their patients.”

But abortion foes have been pushing hard for the changes.

“We thank President Trump for taking decisive action to disentangle taxpayers from the big abortion industry led by Planned Parenthood,” said Marjorie Dannenfelser, president of the anti-abortion Susan B. Anthony List. “The Title X program was not intended to be a slush fund for abortion businesses.”

Added Kristan Hawkins of the group Students for Life of America, “This is a life-saving policy change, as abortion vendors have used these family planning resources to underwrite their deadly enterprise.”

Defunding Planned Parenthood has been a goal of the anti-abortion movement for decades. Republicans thought they could make the group ineligible to provide care to Medicaid patients at part of their bill — which did not pass — to rewrite the Affordable Care Act in 2017. The Planned Parenthood provisions were struck from the bill under Senate rules even before the measure collapsed.

New York Attorney General Letitia James and Oregon Attorney General Ellen Rosenblum promised to file suit against the regulation. California Attorney General Xavier Becerra also said he is prepared to sue, particularly because an estimated one-quarter of all women potentially affected by the changes live in California.

However, a similar set of rules, issued by President Ronald Reagan’s administration in 1987, were eventually in 1991.

The rules will take effect in stages, starting 60 days after they are published in the Federal Register. The portion requiring physical and financial separation would not take effect for a year.

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The state’s new staffing requirements for nursing homes, quietly passed in last year’s budget bill, seem universally unpopular. Patient advocates say the new regulations don’t go far enough and that residents remain at risk in poorly staffed homes. Nursing home operators say they can’t hire enough staff to comply.

Under the new rules, which took effect in July but haven’t yet been enforced, skilled nursing facilities must provide at least 3.5 hours of direct care per resident per day, up from 3.2 hours of care previously. That care can range from inserting a feeding tube to changing an adult diaper or helping residents with eating and bathing.

The California Department of Public Health, which oversees nursing homes, is expected to announce in late January which — if any — facilities it will exempt from the new regulations. But some patient advocates don’t like the nursing homes’ balking.

“We’re appalled by the waiver system. It’s sending the worst possible message to California nursing homes that it’s OK to staff at levels that endanger residents,” said Mike Connors of California Advocates for Nursing Home Reform, a consumer advocacy group.

(Check to see which California nursing homes have applied for workforce shortage waivers and .)

Researchers have strongly linked more nursing staff with better care, with some experts recommending from 3.8 to 4.1 hours of care per patient per day as a bare minimum for quality nursing home care. Having enough staff helps prevent falls, pressure sores and other problems that can land fragile seniors in the hospital.

A recent Kaiser Health News found that for years nursing homes nationwide overstated staffing to the federal government. Now, nursing homes are required to report actual payroll records to remain eligible for Medicare and Medicaid payments.

During the first three months of 2018, 58 percent of California’s skilled nursing facilities averaged at least 3.5 hours of patient care a day, according to a Kaiser Health News analysis of payroll records submitted to the federal government. That rose to 76 percent when including nursing homes where administrators also were counted.

California is one of only a few states that set their own minimum requirements for nursing home staffing. Most states abide by federal government standards requiring skilled nursing facilities that receive money from Medicare or Medicaid to have enough staff to meet residents’ needs, said Robyn Grant, director of public policy and advocacy for National Consumer Voice for Quality Long-Term Care, an advocacy group.

Illinois requires nursing homes to provide a minimum of 3.8 hours of care per patient a day and the District of Columbia requires 4.1 hours, Grant said. Maine and Oklahoma take a different approach, establishing staff-to-patient ratios, rather than hours of care, for nursing homes.

Nursing home officials and their lobbyists say it’s tough to find qualified nurses and assistants in California’s robust economy, and they bemoan what they describe as inadequate reimbursement from Medicare and Medicaid. They also have criticized a provision of the new requirements that 2.4 of the 3.5 hours of patient care must be provided by a certified nursing assistant, rather than another nursing professional.

Nursing homes need flexibility because “not every patient is the same, not every diagnosis is the same,” said Matt Robinson, legislative affairs director for the California Association of Health Facilities, an industry group. “We’re not opposed to more staff. But we want quality staff. We want to make sure there’s a sustainable workforce to meet that mandate, otherwise it’s just an empty mandate.”

Robinson said facilities are applying for waivers on a “good-faith basis.” If waiver requests aren’t granted, he said, nursing homes may reduce their beds or even shut down.

In Los Angeles, the 300-bed Kei-Ai Los Angeles Healthcare Center has applied for an exemption citing a “workforce shortage.” But Cynthia Sakaki Sirlin, whose 86-year-old father, a veteran of the Korean War, lives there says, “I think it’s wrong.”

“I don’t know why they’re doing this. They need more nursing staff to improve patient care, not less, the research shows that. So why are they asking for a waiver? Why is the state allowing them? That just rewards owners who are not willing to staff the homes,” Sakaki Sirlin said.

Sakaki Sirlin, a nurse practitioner and a representative of Kei-Ai’s family council, said that since the formerly nonprofit nursing home was purchased by a real estate developer in 2016, she has noticed more staff turnover. She worries that her father, a wheelchair user who can’t feed himself, won’t get the care he needs. Representatives from Kei-Ai did not respond to a request for comment.

There are nearly 100,000 certified nursing assistants in California, according to federal labor data. Patient advocates say many CNAs choose not to work for nursing homes because of the comparatively low pay and tough workload.

“If they paid them better, they’d have plenty of staff,” even in remote parts of California, said Suzi Fregeau, long-term care program manager in Humboldt and Del Norte counties. The mean hourly wage for certified nursing assistants in California was $16.13 in 2017, according to .

Some of the California homes seeking exemptions have been repeatedly cited by the state’s Department of Public Health for inadequate staffing that led to patient harm. Among them are homes owned by Shlomo Rechnitz, who reportedly controls 1 in 14 nursing home beds in California. He has faced numerous federal and state probes of understaffing and quality problems at his homes.

The CEO of one of Rechnitz’s nursing home management companies said in a written statement that several homes submitted “patient needs” waiver requests on their own with data provided by the company. “All of these facilities prioritize the needs of their patients above all else and these facilities have a stellar history of complying with applicable staffing requirements,” said��David Silver, CEO of Rockport Administrative Services LLC.

“What we’re seeing is that the facilities that already are understaffed — the facilities for which we do get complaints — are the ones asking for waivers,” said Joe Rodrigues, the state’s long-term care ombudsman. “We’re not supportive of those requests.”

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The Food and Drug Administration declared Wednesday that vaping among teenagers has reached “.” The agency told five major e-cigarette manufacturers that they had 60 days to find ways to keep their products away from minors.

“I use the word epidemic with great care,” FDA Commissioner Scott Gottlieb in a Wednesday news release. “E-cigs have become an almost ubiquitous — and dangerous — trend among teens.” Yet, as the panel discusses, health advocates warned that the actions may not be strong enough.

This week’s panelists are Sarah Jane Tribble of Kaiser Health News, Stephanie Armour of The Wall Street Journal, Kimberly Leonard of the Washington Examiner and Rebecca Adams of CQ Roll Call.

They also look at Arkansas’ announcement that more than 4,000 Medicaid enrollees will be suspended for not meeting new work requirements, the Census Bureau’s announcement that the nation’s uninsured rate was unchanged last year, legislation under consideration on Capitol Hill that will affect the Affordable Care Act and efforts to stem the opioid epidemic.

Among the takeaways from this week’s podcast:

• The FDA’s announcement on e-cigarettes appears to be a turning point on officials’ views of how to handle the issue. It was spurred by reports of dramatic growth in teen vaping. Sen. Dick Durbin (D-Ill.) recently reported that teen use has increased by in the past year.
• The e-cigarette industry is largely unregulated. Many brands offer a variety of sweet flavors, even though makers of traditional cigarettes are prohibited from doing that.
• Arkansas’ move to cut adults from the Medicaid expansion program the state rolled out under the ACA is likely to be challenged in court.
• The Trump administration has been a strong supporter of work requirements in the Medicaid program and Seema Verma, who heads the Centers for Medicare & Medicaid Services, tweeted Wednesday night after the Arkansas announcement that she was excited about the work Arkansas has done to connect beneficiaries to jobs and education.
• The Census Bureau’s report Wednesday is the first time since the implementation of ACA coverage expansions that the national uninsured rate did not fall.
• The Republican-led House is expected to vote soon on a package of bills that will remove or postpone more taxes in the ACA, including the penalty for employers who do not offer coverage for workers and a tax on tanning salons. It is doubtful, however, that the measure will get through the Senate this year.

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

Sarah Jane Tribble: Bloomberg News’ by Robert Langreth, David Ingold and Jackie Gu

Kimberly Leonard: Harper’s Magazine’s by Katie Booth

Rebecca Adams: The New York Times and ProPublica’s by Charles Ornstein and Katie Thomas

Stephanie Armour: The Financial Times’

To hear all our podcasts,��click here.

And subscribe to What the Health? on��,����or��.

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But a review of the responses found that some individuals were not aware they apparently had become part of an organized campaign to oppose what’s known as the “340B” program. Some had no memory of signing anything, much less sending their opinions about it.

Of the 1,406 comments that specifically mentioned 340B — part of several thousand comments submitted on a broad proposal to revise medical payment systems — about half included the same or similar wording and were submitted anonymously, an analysis by Kaiser Health News found. Those comments lamented “abuse” of the drug discounts, faulted hospitals for being “greedy” and used phrasing such as “quality, affordable, and accessible.”

Two that were duplicated hundreds of times made the very same grammatical mistake.

They “are clearly related,” said Robert Leonard, a forensic linguistic expert at Hofstra University whose team analyzed the submissions for KHN.

In fact, the wording in the duplicate comments tracks language in a formal letter submitted to regulators by a nonprofit trade group, the Community Oncology Alliance, which receives funding from pharmaceutical companies.

Cancer survivor Janice Choiniere’s name is on a public comment saying reform of the 340B program will help “those suffering from this insidious disease.” But when reached by phone, the 69-year-old Florida resident said she had “no idea” what the program is and didn’t recall signing a petition.

“My first thought is, I don’t fill out and send in responses casually,” Choiniere said. “I’m hoping nobody lifted my information.”

The quarter-century-old federal program requires pharmaceutical companies to sell certain drugs at steep discounts to eligible hospitals and clinics, which don’t have to share their savings with patients. Critics, including Republican lawmakers, have questioned what the facilities do with the money. Doctors in private practice, who are not eligible for the reduced rates, have warned that the program’s continued growth makes it susceptible to exploitation.

The administration’s plan, finalized in November, reduced by $1.6��billion annually what the����pays for the targeted drugs. In late July, the agency proposed expanding those payment cuts.

As with any proposed rule, the purpose of requesting public comments is to help lawmakers and regulators consider the potential effects of their actions. But the pattern identified in the 340B comments, which were posted online by CMS, suggests the system can easily be manipulated. Patients may be especially vulnerable to being used.

“It feels like inappropriate influence,” said Peter Ubel, a physician and behavioral scientist at Duke University’s Fuqua School of Business. “When you have a life-threatening illness, you need to know you can trust your physician to care about your interests ahead of their own.”

KHN reached 10 individuals whose names appeared in the comments — either as a signature on a personal note or on a petition also signed by others. All were patients, former patients or caregivers seen at private practices connected to the Community Oncology Alliance.

Two patients confirmed they had written notes, although they couldn’t say when. Several said they must have signed or written something amid the paperwork handed to them at a doctor’s office during appointments or in follow-up correspondence. A few drew mental blanks.

The name of an 84-year-old melanoma patient shows as an online signature in an individual public comment that described the program’s reform as a matter of “life or death.” But the Florida man, who asked not to be identified, had little recollection of writing it. His wife remembered that he signed something at his doctor’s office “out front on a clipboard” before getting his biweekly cancer treatment.

“If my doctor wanted me to sign something, I would sign it for him,” the man said. He “saved my life.”

Julie Yarbrough, whose husband received treatment at New England Cancer Specialists in Maine, remembered signing a petition “at the [doctor’s] check-in area” about hospitals abusing 340B discounts. She was the only individual contacted who had a basic understanding of the program.

The patients reached by KHN sought care at either New England Cancer Specialists, which has three locations in Maine, or Florida Cancer Specialists, which runs nearly 100 treatment centers in that state. Data posted on the federal website����show that more than 60��percent of the 340B-specific comments originated in Florida.

“We do a good job of educating patients and letting them know how to get involved,” said Michael Diaz, director of patient advocacy for Florida Cancer Specialists and vice president on the Community Oncology Alliance’s executive committee. “They need to be able to contribute and give their opinion.”

Steve D’Amato, executive director of New England Cancer Specialists and an Alliance board member, mentioned patients’ support in a����accompanying a petition posted multiple times to the government portal Oct.��10. The petition included the trade group’s website; D’Amato noted that “patient signatures obtained in just 2 days” were attached.

When asked recently about patients who didn’t recall signing something, D’Amato said he did not have the petition in front of him and referred all questions to the Alliance’s executive director, Ted Okon. In an interview, Okon denied that the organization had any role in soliciting patient comments.

“We didn’t do anything with patient petitions,” said Okon, although talking points and material were sent to practices nationwide for them to use when submitting comments. “This is what we do in terms of advocating.”

Susannah Rose, scientific director of research in the Cleveland Clinic’s patient experience office, said there is “always a worry about coercion” when doctors make a request of patients, but more so when oncologists do the asking.

“Cancer patients often feel very much in the hands of their oncologists, and they are often suffering from significant distress,” said Rose, who serves on the ethics committee of the American Society of Clinical Oncology.

The Washington-based Alliance represents private oncology practices as well as about 50��, according to its website. Formed in 2003 when Congress approved Medicare’s prescription drug program, it was a leading critic of a controversial 2016 proposal to change how CMS paid for some drugs in Medicare. The group’s revenue nearly quadrupled that year, to $16.3 million from $4.4 million in 2015, according to federal tax filings. The proposal never became reality.

Pharmaceutical giants Sanofi, Pfizer, Eli Lilly, Bristol-Myers Squibb and Merck each confirmed paying annual dues of $75,000 to the Alliance. The five companies also paid it nearly $1��million between 2014 and 2017 for research papers, conferences, filming and patient education, according to corporate transparency reports.

Walgreens and PhRMA, the pharmaceutical industry trade group, also confirmed membership but did not disclose how much they pay in dues. Okon said corporate membership fees range from $25,000 to $75,000 annually while individual oncologists and their practices pay “usually on the order of a thousand dollars, two thousand dollars.”

Drug manufacturers do not influence the Alliance’s position on 340B, he said, noting in an email that “correlation is not causality.”

After the comment period ended, CMS slashed 340B payments to hospitals by $1.6 billion annually. Medicare had been paying hospitals 6 percent above a drug’s average sales price; it now pays them 22.5 percent less than the average sales price.

CMS Administrator Seema Verma and Eric Hargan, deputy secretary of the Health and Human Services Department, emphasized that public comments played into their decision. In the 1,133-page��, they said they shared the concern that current Medicare payments “are well in excess of the overhead and acquisition costs” for drugs bought under the program.

“We thank the commenters for their support,” they wrote.

Kaiser Health News data correspondent Sydney Lupkin contributed to this report.

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