US government is testing avian flu vaccines for birds, but ending the historic outbreak isn’t that simple | CNN



CNN
 — 

The United States is facing what some experts are calling “a new era for bird flu.”

Since January 2022, the country has been battling the biggest outbreak yet of highly pathogenic avian influenza in wildlife. The virus is a major threat to commercial and backyard flocks, and it has started to show up in hundreds of mammals, including a handful of pet cats.

The risk to humans is low; there has been only one human case of this virus in the US since the outbreak began, according to the US Centers for Disease Control and Prevention, and nine cases globally, mostly among people who work with birds. The CDC says there are trials underway of vaccines that could be used to protect humans in case the virus changes and becomes more of a threat.

Separately, the US Department of Agriculture, the US National Poultry Research Center and labs at a handful of American universities have been experimenting with vaccine candidates to be used in birds.

The USDA’s Agriculture Research Service started trials of four vaccine candidates for animals in April and expects to have initial data on a single-dose vaccine available this month. A two-dose vaccine challenge study – in which animals are exposed to the virus to see how well the vaccine works – should produce results in June.

If the animal vaccines look to be protective, the USDA’s next step would be to work with manufacturers on whether it would be feasible to use them.

One manufacturer, Zoetis, announced April 5 the development of a vaccine geared toward currently circulating virus strains. The company says it would take about a year to get to the distribution stage in the US.

Vaccines are already available in other countries, including China, Egypt, Indonesia, Italy, Mexico and Vietnam, and some nations are vaccinating their commercial flocks.

However, in the United States, not all poultry experts are ready to use a vaccine, even if one becomes available – at least, not yet. Instead, their focus remains on eradicating the virus.

As of April 26, the CDC says, nearly 58.8 million poultry have been affected by avian flu since January 2022. The virus has been detected in at least 6,737 wild birds, and the number is likely to be much higher. There have been poultry outbreaks in 47 states.

Although this is the worst outbreak in history, improved biosecurity measures have vastly reduced the number of cases in the commercial sector, according to the USDA. When the outbreak began in early 2022, there were 51 detections among commercial poultry. In March 2023, there were only seven.

The USDA says close surveillance work among its Animal and Plant Health Inspection Service (APHIS) and state and industry partners led to the reduction in cases.

Generally, there ares two ways of confronting this kind of highly infectious disease in poultry, according to Rodrigo Gallardo, a professor in poultry medicine and a specialist in avian virology at the University of California, Davis.

“One of them is through vaccination action. And then the other one is through eradication,” he said.

In the United States, the latter is the approach for now, Gallardo said.

If farmers detect even a single case in a flock, they will put down the birds right away.

“The virus keeps replicating and amplifying if the birds are alive, so the only way of stopping the replication and limiting the dissemination is by depopulation,” Gallardo said.

Tom Super, the senior vice president for communications for the National Chicken Council, the national trade association for the US broiler chicken industry, said in an email to CNN that although it supports the ongoing discussions about a vaccination program, “currently we support the eradication policy of APHIS and believe that right now this is the best approach at eliminating [bird flu] in the U.S.”

The US Poultry and Egg Association said it’s “certainly a topic of discussion,” but the organization doesn’t have a position on implementing a vaccination program.

A vaccination program comes with several complications, Gallardo said. Vaccinated birds would be protected, but with this highly infectious disease, they still could shed some virus that could infect unprotected birds.

“So vaccination, in that case, creates amplification if it is not done right,” Gallardo said.

Plus, it’s difficult to detect the disease in vaccinated birds. Birds that are vaccinated don’t always show signs if they’re sick, so it would be hard to know what birds to keep separate from the others. Tests also have a hard time telling the difference between antibodies generated by vaccination and antibodies from an infection.

“If you’re not able to diagnose it, it might spread more than what it would do if you are able to diagnose it and eradicate it,” Gallardo said.

Countries that have chosen the vaccination route see more endemic strains develop, meaning the virus is never really totally wiped out.

“This is a very variable virus, and if you don’t update the vaccine that you’re applying to meet the change in the virus, then you won’t be able to completely protect the birds. Partial protection means more birds will be spreading the virus,” Gallardo said.

A vaccine has never been used against highly pathogenic avian influenza in the US, according to the USDA. The agency created a vaccine after an outbreak in 2014 and 2015, but that involved a different strain, so it wouldn’t work on the latest version of the virus.

The logistics of a vaccine like this are difficult, said Dr. Yuko Sato, an associate professor in the College of Veterinary Medicine at Iowa State University.

“You have to make sure that the new vaccine will protect against this current virus and hope that it doesn’t mutate or change so that the vaccine will continue to be protective,” Sato said.

“The vaccine is not a silver bullet. This is not going to prevent infection of the birds, so in order to have an exit strategy as the country, you would have to make sure that if you vaccinate, if you still have positive birds, you have to be able to make sure that you could stamp out the virus. Otherwise, we’ll never be looking at eradicating the virus from the United States.”

Another concern: Birds are a big business in the US.

The US has the largest poultry industry in the world, with 294,000 poultry farms. The market size for chicken and turkey meat production alone for 2023 is projected to generate $57.8 billion, according to market analysis firm IbisWorld.

Bird flu has hurt business in the US, but it could do so in a bigger way if the nation vaccinates poultry, according to the National Chicken Council.

“The National Chicken Council does not support the use of a vaccine for [bird flu] for a variety of reasons – the primary one being trade. Most countries, including the US, do not recognize countries that vaccinate as free of [bird flu] due to concerns that vaccines can mask the presence of the disease. Therefore, they do not accept exports from countries that do vaccinate,” Super wrote in his email.

The US broiler industry is the second largest exporter of chicken in the world. It exports about 18% of the chicken meat produced in the United States, valued at more than $5 billion annually.

“If we start vaccinating for [bird flu] in the U.S., the broiler industry will lose our ability to export which will have a significant impact on the industry – while costing billions and billions of dollars to the U.S. economy every year,” Super said.

With the way the disease is spreading, scientists would also probably have to vaccinate wildlife – which is nearly impossible.

Of the birds affected in this outbreak, about 76% are commercial egg-laying hens, 17% are turkeys, and only 5% are broilers, the chickens used for meat, Super said. The rest of the cases have been among ducks, backyard chickens and game birds.

“So the U.S. poultry sector that least needs a vaccine would have the most to risk from using one,” he said.

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Free Covid-19 tests aren’t guaranteed after May 11, but there’s still time to stock up | CNN



CNN
 — 

When the US Covid-19 public health emergency ends this month, coronavirus tests will still be available, but there will be changes to who pays for them.

Questions remain about exactly what those coverage changes will look like, but the guarantee of free testing will be lost for many – and some costs may shift to become out-of-pocket.

There are still ways to take advantage of the benefits provided by the public health emergency before it expires May 11.

For the past two years, the federal government has required private insurance companies to cover up to eight Covid-19 tests each month. Packs of home tests can be found at pharmacies and other local retailers, and costs may be covered upfront or reimbursed by insurance plans.

The Biden administration launched COVIDtests.gov in January 2022 to allow US households to order free Covid-19 test kits to be delivered to home. The site is still up and running, with four free tests available to any household that hasn’t ordered since December.

Also, the US Food and Drug Administration has extended the expiration date for many home tests beyond what is printed on the box. Check the agency’s website before throwing them out.

“People should go out and ensure that they have tests available, because what we know about Covid is it’s quite pernicious, and clearly, people can get it more than once,” said Mara Aspinall, a professor at Arizona State University’s College of Health Solutions and a testing and diagnostics expert.

“It’s critical that people have the ability to test and then isolate or stay at home if they test positive.”

Once the public health emergency ends, Covid-19 tests – both home tests and laboratory tests – will be subject to cost sharing, in which costs of services are divided between the patient and their insurance plan.

Private insurers will no longer be required to cover the costs of testing. The federal government has encouraged continued coverage, but each company will ultimately be able to make their own decision. So far, details on those plans are scarce.

The Blue Cross Blue Shield Association told CNN that it’s evaluating the best way to keep members informed of changes. Moving into the next phase, coverage may include “reasonable limits” on tests.

“As COVID-19 becomes endemic, each Blue Cross and Blue Shield company is looking at how best to support access to diagnostic testing for COVID-19, just as is done for all other diagnostic testing,” said David Merritt, senior vice president of policy and advocacy for the Blue Cross Blue Shield Association. “We are committed to protecting patients from unnecessary costs, while ensuring they receive the care they need, when they need it.”

Aetna told CNN that it did not have any details to share. Cigna, Humana and UnitedHealthcare did not respond to multiple requests for comment.

Medicare Part B beneficiaries will continue to have coverage for lab tests when ordered by a provider, but the same will not apply for home tests.

For those on Medicaid plans, all tests will continue to be covered for free until the end of September 2024.

The US Centers for Disease Control and Prevention will also continue to support uninsured individuals and socially vulnerable communities “pending resource availability,” according to a roadmap outlined by the US Department of Health and Human Services.

There may be other avenues to free or cheap testing, too – perhaps through state and local governments or other programs.

Recently, for example, the North Carolina Department of Health and Human Services announced the expansion of a program that now allows all state residents to order free tests through June.

The Rockefeller Foundation, a private philanthropic organization, has also extended a public-private partnership program that works with states to get free tests to at-risk communities.

“The testing phenomenon during Covid changed many times,” Aspinall said.

It was a core focus at the beginning, but the priority then shifted to vaccines, she said. The initial Omicron wave brought a renewed interest in testing, and long waits for lab-based tests drove people to home tests.

“It put power and privacy in an individual consumer’s hand,” Aspinall said.

Millions of households took advantage of free Covid-19 tests provided by the federal government in the months after it launched, and a recent CDC report shows that the program helped to get kits to many who otherwise wouldn’t have tested and improved equity in testing overall.

About 60% of US households ordered a test kit from COVIDTests.gov, and nearly a third of all US households reported using at least one of those tests by April or May last year.

Nearly a quarter of people who reported using the government-provided tests said that they probably would not have tested for Covid-19 if not for the free kits, according to the report – suggesting that more than 13 million people took a Covid-19 test who otherwise wouldn’t have. More than 1 in 5 people who used their free tests reported at least one positive result.

Overall, use of the free test kits was similar across racial and ethnic groups. This is a “considerable difference” from other home test kits, where use was “highly inequitable,” according to the report. Black people were more likely than White people to use tests provided through COVIDTests.gov but 72% less likely than White people to use other at-home test kits.

Now, however, Covid-19 cases are a third of what they were a year ago, and hospitalizations and deaths are about as low as they’ve ever been. Testing rates have dropped significantly, too.

Along with the decreased transmission, the volume of testing may have dropped as people better understand what the course of an infection looks like, Aspinall said.

She estimates that people may use an average of one or two tests per incident, down from an average of five or six.

While Covid-19 “remains a public health priority,” the federal government says “we are in a better place in our response than we were three years ago, and we can transition away from the emergency phase.”

Still, experts agree that continued monitoring is key. Advancements in technologies like wastewater surveillance have helped supplement dwindling testing data, but testing will continue to be an important tool for individuals to keep themselves and their loved ones safe and healthy.

“The public health emergency may be over but Covid is not over,” Aspinall said.

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These women ran an underground abortion network in the 1960s. Here’s what they fear might happen today | CNN



CNN
 — 

The voice on the phone in 1966 was gruff and abrupt: “Do you want the Chevy, the Cadillac or the Rolls Royce?”

A Chevy abortion would cost about $200, cash in hand, the voice explained. A Cadillac was around $500, and the Rolls Royce was $1,000.

“You can’t afford more than the Chevy? Fine,” the voice growled. “Go to this address at this time. Don’t be late and don’t forget the cash.” The voice disappeared.

Dorie Barron told CNN she recalls staring blankly at the phone in her hand, startled by the sudden empty tone. Then it hit her: She had just arranged an illegal abortion with the Chicago Mafia.

The motel Barron was sent to was in an unfamiliar part of Chicago, a scary “middle of nowhere,” she said. She was told to go to a specific room, sit on the bed and wait. Suddenly three men and a woman came in the door.

“I was petrified. They spoke all of three sentences to me the entire time: ‘Where’s the money?’ ‘Lie back and do as I tell you.’ And finally ‘Get in the bathroom,’” when the abortion was over, Barron said. “Then all of a sudden they were gone.”

Bleeding profusely, Barron managed to find a cab to take her home. When the bleeding didn’t stop, her bed-ridden mother made her go to the hospital.

At 24, Barron was taking care of her ailing mother and her 2-year-old daughter when she discovered she was pregnant. Her boyfriend, who had no job and lived with his parents, “freaked,” said Barron, who appears in a recent HBO documentary. The boyfriend suggested she get an abortion. She had never considered that option.

“But what was I to do? My mom was taking care of my daughter from her bed while I worked — they would read and play games until I got home,” Barron said.”How was either of us going to cope with a baby?

“Looking back, I realize I was taking my life in my hands,” said Barron, now an 81-year-old grandmother. “To this day it gives me chills. If I had died, what in God’s green earth would have happened to my mom and daughter?”

Women in the 1960s endured restrictions relatively unknown to women today. The so-called “fairer sex” could not serve on juries and often could not get an Ivy League education. Women earned about half as much as a man doing the same job and were seldom promoted.

Women could not get a credit card unless they were married — and then only if their husband co-signed. The same applied to birth control — only the married need apply. More experienced women shared a workaround with the uninitiated: “Go to Woolworth, buy a cheap wedding-type ring and wear it to your doctor’s appointment. And don’t forget to smile.”

Marital rape wasn’t legally considered rape. And, of course, women had no legal right to terminate a pregnancy until four states — Alaska, Hawaii, New York and Washington — legalized abortion in 1970, three years before Roe v. Wade became the law of the land.

Illinois had no such protection, said Heather Booth, a lifelong feminist activist and political strategist: “Three people discussing having an abortion in Chicago in 1965 was a conspiracy to commit felony murder.”

Despite that danger, a courageous band of young women — most in their 20’s, some in college, some married with children — banded together in Chicago to create an underground abortion network. The group was officially created in 1969 as the “Abortion Counseling Service of Women’s Liberation.”

But after running ads in an underground newspaper: “Pregnant? Don’t want to be? Call Jane,” each member of the group answered the phone as “Jane.”

Despite their youth, members of Jane managed to run an illegal abortion service dedicated to each woman's needs.
From left: Martha Scott, Jeanne Galatzer-Levy, Abby Pariser, Sheila Smith and Madeline Schwenk.

“We were co-conspirators with the women who called us,” said 75-year-old Laura Kaplan, who published a book about the service in 1997 entitled “The Story of Jane: The Legendary Underground Feminist Abortion Service.”

“We’ll protect you; we hope you’ll protect us,” Kaplan said. “We’ll take care of you; we hope you’ll take care of us.”

What started as referrals to legitimate abortion providers changed to personalized service when some members of Jane learned to safely do the abortions themselves. Between the late 1960s and 1973, the year that the Supreme Court decided Roe v. Wade, Jane had arranged or performed over 11,000 abortions.

“Our culture is always searching for heroes,” said Kaplan. “But you don’t have to be a hero to do extraordinary things. Jane was just ordinary people working together — and look what we could accomplish, which is amazing, right?”

Even after several members were caught and arrested, the group continued to provide abortions for women too poor to travel to states where abortion had been legalized.

“I prayed a lot. I didn’t want to go to jail,” said 80-year-old Marie Learner, who allowed the Janes to perform abortions at her apartment.

“Some of us had little children. Some were the sole breadwinners in their home,” Learner said. “It was fearlessness in the face of overwhelming odds.”

Marie Learner opened her home to women undergoing abortions. Her neighbors knew, she said, but did not tell police.

The story of Jane has been immortalized in Kaplan’s book, numerous print articles, a 2022 movie, “Call Jane,” starring Elizabeth Banks and Sigourney Weaver, and a documentary on HBO (which, like CNN, is owned by Warner Bros. Discovery).

Today the historical tale of Jane has taken on a new significance. After the 2022 Supreme Court reversal of Roe v. Wade and the mid-term takeover of the US House of Representatives by Republicans, emboldened conservative lawmakers and judges have acted on their anti-abortion beliefs.

Currently more than a dozen states have banned or imposed severe restrictions on abortion. Georgia has banned abortions after six weeks, even though women are typically unaware they are pregnant at that stage. In mid-April, Florida Governor Ron DeSantis signed a bill that would ban most abortions after six weeks. It won’t go into effect until the state Supreme Court overturns its previous precedent on abortion. Several other states are considering similar legislation. In other states, judicial battles are underway to protect abortion access.

“It’s a horrific situation right now. People will be harmed, some may even die,” said Booth, who helped birth the Jane movement while in college.

“Women without family support, without the information they need, may be isolated and either harm themselves looking to end an unwanted pregnancy or will be harmed because they went to an unscrupulous and illegal provider,” said Booth, now 77.

A key difference between the 60s and today is medication abortion, which 54% of people in the United States used to end a pregnancy in 2022. Available via prescription and through the mail, use of the drugs is two-fold: A person takes a first pill, mifepristone, to block the hormone needed for a pregnancy to continue.  A day or two later, the patient takes a second drug, misoprostol, which causes the uterus to contract, creating the cramping and bleeding of labor.

In early April a Texas judge, US District Judge Matthew Kacsmaryk – a Trump appointee who has been vocal about his anti-abortion stance — suspended the US Food and Drug Administration’s approval of mifepristone despite 23 years of data showing the drug is safe to use, safer even than penicillin or Viagra.

On Friday, the Supreme Court froze the ruling and a subsequent decision by the Fifth US Circuit Court of Appeals at the request of the Justice Department and the drug manufacturer. The action allows access to mifepristone in states where it’s legal until appeals play out over the months to come.

However, 15 states currently restrict access to medication abortion, even by mail.

The actions of anti-abortion activists, who have been accused of “judge shopping” to get the decisions they want, is “an unprecedented attack on democracy meant to undermine the will of the vast majority of Americans who want this pill — mifepristone — to remain legal and available,” Heather Booth told CNN.

“This is a further weaponization of the courts to brazenly advance the end goal of banning abortion entirely,” she added.

If women in her day could have had access to medications that could be used safely in their homes, they would not have been forced to risk their lives, said Dorie Barron, thinking back to her own terrifying abortion in a sketchy Chicago motel.

“I’m depressed as hell, watching stupid, indifferent men control and destroy women’s lives all over again,” she said. “I really fear getting an abortion could soon be like 1965.”

Chicago college student Heather Booth had just finished a summer working with civil rights activists in Mississippi when she was asked to help with a different kind of injustice.

Heather Booth, 18, with civil rights heroine Fannie Lou Hamer during

A girl in another dorm was considering suicide because she was pregnant. Booth, who excelled at both organization and chutzpah, found a local doctor and negotiated an abortion for the girl. Word spread quickly.

“There were about 100 women a week calling for help, much more than one person could handle,” Booth said. “I recruited about 12 other people and began training them how to do the counseling.”

Counseling was a key part of the new service. This was a time when people “barely spoke about sex, how women’s bodies functioned or even how people got pregnant,” Booth said. To help each woman understand what was going to happen to them, Booth quizzed the abortion provider about every aspect of the procedure.

“What do you do in advance? Will it be painful? How painful? Can you walk afterwards? Do you need someone to be with you to take you home?” The questions continued: “What amount of bleeding is expected, and can a woman handle it on their own? If there’s a problem is there an urgent number they can call?”

Armed with details few if any physicians provided, the counselors at Jane could fully inform each caller about the abortion experience. The group even published a flyer describing the procedure, long before the groundbreaking 1970 book “Our Bodies, Ourselves” began to educate women about their sexuality and health.

“I don’t particularly like doctors because I always feel dissatisfied with the experience,” said Marie Learner, who spoke to many of the women who underwent an abortion at her home.

“But after their abortion at Jane, women told me, ‘Wow, that was the best experience I’ve ever had with people helping me with a medical issue.’”

Eileen Smith, now 73, was one of those women. “Jane made you feel like you were part of this bigger picture, like we were all in this together,” she said. “They helped me do this illegal thing and then they’re calling to make sure I’m OK? Wow!

“For me, it helped battle the feeling that I was a bad person, that ‘What’s wrong with me? Why did I get pregnant? I should know better’ voice in my head,” said Smith. “It was priceless.”

Like many young women in the 60s, Heather Booth often protested for civil and women's rights.

Many of the women who joined Jane had never experienced an abortion. Some viewed the work as political, a part of the burgeoning feminist movement. Others considered the service as simply humanitarian health care. All saw the work as an opportunity to respect each woman’s choice.

“I was a stay-at-home mom with four kids,” said Martha Scott, who is now in her 80s. “We knew the woman needed to feel as though she was in control of what was happening to her. We were making it happen for her, but it was not about us. It was about her.”

Some volunteers, like Dorie Barron, experienced the Jane difference firsthand when she found herself pregnant a few years after her abortion at the hands of the Mafia.

“It was a 100% total reversal — I had never experienced such kindness,” Barron said. Not only did a Jane hold each woman’s hand and explain every step of the process, “they gave each of us a giant supply of maternity sanitary pads, and a nice big handful of antibiotics,” she said. “And for the next week, I got a phone call every other day to see how I was.”

Barron soon began volunteering for Jane by providing pregnancy testing for women in the back of a church in Chicago’s Hyde Park.

“It wasn’t just abortion,” Barron explained. “We also said, ‘You could consider adoption,’ and gave adoption referrals. And if the woman wanted to continue with her pregnancy, we said, ‘Fine, please by all that is holy make sure you get prenatal care, take your vitamins, and eat as best you can.’ It was women helping women with whatever they needed.”

Most of the women who contacted Jane were unable to support themselves, in unhealthy relationships, or already had children at home, so the service was a way of “helping them get back on track,” said Smith, who, like Barron, had begun working for Jane after her abortion.

“We were telling them ‘This isn’t the end of the world. You can continue to leave your boyfriend or your husband or continue to just take care of those kids you have.’ We were there to help them get through this,” said Smith, who later became a homecare nurse.

From left: Eileen Smith, Diane Stevens and Benita Greenfield were three of the dozens of women who volunteered for Jane.

Diane Stevens says she came to work for Jane after experiencing an abortion in 1968 at the age of 19. She was living in California at the time, which provided “therapeutic abortions” if approved in advance by physicians.

“I’d had a birth control failure, and I was coached by Planned Parenthood on how to do this,” said Stevens, now 74. “I had to see two psychiatrists and one doctor and tell them I was not able to go through with the pregnancy because it would a danger to both my physical and mental health.

“I was admitted to the psychiatric ward, although I didn’t really know that — I thought I was just in a hospital bed. But oh no, ‘I was mentally ill,’ so that’s where they put me,” said Stevens, who later went to nursing school with Smith. “Then they wheeled me off for the abortion. I had general anesthesia, was there for two days, and then I was discharged. Isn’t that crazy?”

Sakinah Ahad Shannon, now 75, was one of the few Black women who volunteered as a counselor at Jane. She joined after accompanying a friend who was charged a mere $50 for her abortion. At that time, Jane’s fee was between $1 and $100, based on what the woman could afford to pay, Shannon said.

“When I walked in, I said, ‘Oh my God, here we go again. It’s a room of White women, archangels who are going to save the world,’” said Shannon, a social worker and member of the Congress of Racial Equality, an interracial group of non-violent activists who pioneered “Freedom Rides” and helped organize the March on Washington in 1963.

What she heard and saw at her friend’s counseling session was so impressive it “changed my life,” Shannon said. She and her family later opened and operated three Chicago abortion clinics for over 25 years, all using the Jane philosophy of communication and respect.

“It was a profoundly amazing experience for me,” she said. “I call the Janes my sisters. The color line didn’t matter. We were all taking the same risk.”

Sakinah Ahad Shannon and her daughters went on to open and run three abortion clinics in Chicago.

It wasn’t long before the women discovered a “doctor” performing abortions for Jane had been lying about his credentials. There was no medical degree — in the HBO documentary, he admitted he had honed his skills by assisting an abortion provider.

The group imploded. A number of members quit in horror and dismay. For the women who stayed, it was an epiphany, said Martha Scott. Like her, several of the Janes had been assisting this fake doctor for years, learning the procedures step by step.

“You’d learn how to insert a speculum, then how to swap out the vagina with an antiseptic, then how to give numbing shots around the cervix and then how to dilate the cervix. You learned and mastered each step before you moved on to the next,” said Laura Kaplan, who chronicled the procedure in her book.

By now, several of the Janes were quite experienced and willing to do the work. Why not perform the abortions themselves?

“Clearly, this was an intense responsibility,” said Judith Acana, a 27-year-old high school teacher who joined Jane in 1970. She started her training by helping “long terms,” women who were four or five months along in the pregnancy.

“Remember, abortion was illegal (in Illinois) so it could take weeks for a woman to find help,” said Arcana, now 80. “Frequently women who wanted an abortion at 8 or 10 weeks wound up being 16 or 18 weeks or more by the time they found Jane.”

The miscarriage could happen quickly, but it rarely did, she said. It usually took anywhere from one to two days.

“Women who had no one to help them would come back when contractions started,” Arcana said. “One of my strongest memories is of a teenage girl who had an appointment to have her miscarriage on my living room floor.”

The group also paid two Janes to live in an apartment and be on call 24/7 to assist women who had no one to help them miscarry at home, said Arcana, a lifelong educator, author and poet. “But many women took care of it on their own, in very amazing and impressive and powerful ways,” she said.

Judith Arcana learned how to do abortions herself and wrote about the Jane experience in poems, stories, essays and books.

Any woman who had concerns or questions while miscarrying alone could always call Jane for advice any time of the day or night.

“People would call in a panic: ‘The bleeding won’t stop,’” Smith recalled. “I would tell them, ‘Get some ice, put it on your stomach, elevate your legs, relax.’ And they would say ‘Oh my gosh, thank you!’ because they were so scared.”

For women who were in their first trimester, Jane offered traditional D&C abortions — the same dilation and curettage used by hospitals then and today, said Scott, who performed many of the abortions for Jane. Later the group used vacuum aspiration, which was over in a mere five to 10 minutes.

“Vacuum aspiration was much easier to do, and I think it’s less difficult for the woman,” Scott said. “Abortion is exactly like any other medical procedure. It’s the decision that’s an issue — the doing is very straightforward. This was something a competent, trained person could do.”

It was May 3, 1972. Judith Arcana was the driver that day, responsible for relocating women waiting at what was called “the front” to a separate apartment or house where the abortions were done, known as “the place.”

On this day, a Wednesday, the “place” was a South Shore high-rise apartment. Arcana was escorting a woman who had completed her abortion when they were stopped by police at the elevator.

“They asked us, ‘Which apartment did you come out of?’ And the poor woman burst into tears and blurted out the apartment number,” Arcana said. “They took me downstairs, put cuffs on me and hooked me to a steel hook inside of the police van.”

Inside the apartment on the 11th floor, Martha Scott said she was setting up the bedroom for the next abortion when she heard a knock at the door, followed by screaming: “You can’t come in!”

“I shut the bedroom door and locked it,” Scott said, then hid the instruments and sat on the bed to wait. It wasn’t long until a cop kicked the door in and made her join the other women in the living room.

“We tell this joke about how the cops came in, saw all these women and said, ‘Where’s the abortionist?’ You know, assuming that it would be a man,” Scott said.

By day’s end, seven members of Jane were behind bars: Martha Scott, Diane Stevens, Judy Arcana, Jeanne Galatzer-Levy, Abby Pariser, Sheila Smith and Madeleine Schwenk. Suddenly what had been an underground effort for years was front page headlines.

“Had we not gotten arrested, I think no one would ever have known about Jane other than the women we served,” Scott said.

Top: Sheila Smith and Martha Scott.
Bottom: Diane Stevens and Judith Arcana.

An emergency meeting of Jane was called. The turnout was massive — even women who had not been active in months showed up, anxious to know the extent of the police probe, according to the women with whom CNN spoke.

Despite widespread fear and worry, the group immediately began making alternate plans for women scheduled for abortions at Jane in the next few days to weeks. The group even paid for transportation to other cities where abortion had already been legalized, they said.

News reports over the next few days gave further details of the bust: There was no widespread investigation by the police. It was a single incident, triggered by a call from a sister-in-law who was upset with her relative’s decision to have an abortion, they said.

“It wasn’t long after I was arrested that I came back and worked for quite a few months,” said Scott, one of the few fully trained to do abortions.

“I like to think I was a good soldier,” Scott said. “I like to think what did made a difference not only to a whole bunch of people, but also to ourselves. It gave us a sense of empowerment that comes when you do something that is hard to do and also right.”

As paranoia eased, women began to come back to work at Jane, determined to carry on.

“After the bust, we had a meeting and were told ‘Everybody needs to start assisting and learn how to do abortions.’ I was like, ‘Whoa, whoa, whoa!’” said Eileen Smith, who had not been arrested. “But you felt like you really didn’t have much of a choice. We had to keep the service running.”

Laura Kaplan volunteered for the Janes, later immortalizing the group in her book,

The preliminary hearing for the arrested seven was in August. Several of the women in the apartment waiting for abortions the day of the arrest suddenly developed amnesia and refused to testify. According to Kaplan’s book, one of the women later said, “The cops tried to push me around, but f**k them. I wasn’t going to tell on you.”

It didn’t matter. Each Jane was charged with 11 counts of abortion and conspiracy to commit abortion, with a possible sentence of up to 110 years in prison.

As they waited for trial, the lawyer for the seven, Jo-Anne Wolfson, adopted delaying tactics, Kaplan said. A case representing a Texas woman, cited as “Jane Roe” to protect her privacy, was being considered by the US Supreme Court. If the Court ruled in Roe’s favor, the case against the Jane’s might be thrown out.

That’s exactly what happened. On March 9, 1973, three months after the Supreme Court had legalized abortion in the US, the case against the seven women was dropped and their arrest records were expunged.

Later that spring, a majority of Janes, burned out by the intensity of the work over the last few years, voted to close shop. An end of Jane party was held on May 20. According to Kaplan’s book, the invitation read:

“You are cordially invited to attend The First, Last and Only Curette Caper; the Grand Finale of the Abortion Counseling Service. RSVP: Call Jane.”

Today, most of the surviving members of Jane are in their 70s and 80s, shocked but somehow not surprised by the actions of abortion opponents.

“This is a country of ill-educated politicos who know nothing about women’s bodies, nor do they care,” said Dorie Barron. “It will take generations to even begin to undo the devastating harm to women’s rights.”

In the meantime, women should research all available options, keep that information confidential, seek support from groups working for abortion rights, and “share your education with as many women as you can,” Barron added.

As more and more reproductive freedoms have been rolled back over the past year, many of the Janes are angry and fearful for the future.

Abortion rights demonstrators walk across the Brooklyn Bridge in New York nearly two weeks after the leak of a draft Supreme Court opinion that would overturn Roe v. Wade.

“This is about the most intimate decision of our lives — when, whether and with whom we have a child. Everyone should have the ability to make decisions about our own lives, bodies, and futures without political interference,” said Heather Booth, who has spent her life after leaving Jane fighting for civil and women’s rights.

“We need to organize, raise our voices and our votes, and overturn this attack on our freedom and our lives. I have seen that when we take action and organize we can change the world.”

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Biden administration declares fentanyl laced with xylazine ‘an emerging threat’ in the US | CNN



CNN
 — 

The White House has declared that the powerful synthetic opioid fentanyl combined with xylazine – an animal tranquilizer that’s increasingly being used in illicit drugs – is an “emerging threat” facing the United States due to its role in the ongoing opioid crisis.

Administration officials call the threat FAAX, for fentanyl-adulterated or -associated xylazine.

The move, announced Wednesday, marks the first time in history that any administration has declared a substance to be an emerging threat to the country, said Dr. Rahul Gupta, director of the Office of National Drug Control Policy. The SUPPORT Act of 2018 established that the office has authority to declare such “emerging threats,” and no administration has used it until now. Last year, Congress declared methamphetamine an emerging drug threat but none have been declared by an administration previously. Under other agencies or in separate circumstances, concerns such as bioterrorism, infectious diseases or climate change may be identified as “emerging threats.”

“This drug, which is an animal sedative, is being mixed with fentanyl and is being found in almost all 50 states now,” Gupta said Tuesday. “It’s become an important part for us to make sure that we’re declaring it an emerging threat.”

Now that the administration has declared fentanyl combined with xylazine an emerging threat, it has 90 days to coordinate a national response. “We are working quickly to develop and implement a whole of government nationwide plan, with real deliverable action, that will save lives and will be published within 90 days of this designation,” Gupta said.

Xylazine, also known as tranq or tranq dope, has been linked to an increasing number of overdose deaths in the United States due to its rising illicit use. Between 2020 and 2021, overdose deaths involving xylazine increased more than 1,000% in the South, 750% in the West and about 500% in the Midwest, according to an intelligence report released last year by the US Drug Enforcement Administration.

And in some cases, people might not even know that xylazine was in the drug they used.

Just last month, authorities at the DEA issued a public safety alert about the “widespread threat” of fentanyl mixed with xylazine, reporting that in 2022 approximately 23% of fentanyl powder and 7% of fentanyl pills seized by the DEA contained xylazine.

Fentanyl, which has been driving the opioid crisis, is a fast-acting opioid, and people who use it illicitly say that adding xylazine can extend the duration of the high the drug provides.

Xylazine is not an opioid. It is approved by the US Food and Drug Administration for use as a tranquilizer in veterinary medicine, typically in horses, but it is not approved for use in humans. And xylazine can do major damage to the human body, including leaving drug users with severe skin ulcers, soft-tissue wounds and necrosis – sometimes described as rotting skin – that can lead to amputation.

“Xylazine is one of the contaminants in fentanyl, but there could be others,” Gupta said. “So, I think with the declaration of an emerging threat, we’re sending a clear message to producers and traffickers of illicit xylazine and illicit fentanyl that we’re going to respond quicker, we’re going to match the challenge of evolution of these drugs supply, and that we’re going to protect lives first and foremost.”

Now that xylazine has been declared an emerging threat, some of President Biden’s $46 billion drug budget request to Congress can be used to respond.

This year, the Biden administration announced that the President has called on Congress to invest $46.1 billion for agencies overseen by the Office of National Drug Control Policy to tackle the nation’s illicit drug crisis.

If the budget request is not approved, there could be the option to reallocate money within the Office of National Drug Control Policy, but “we don’t want to be in a position where moneys that are being utilized for some other important aspect of saving lives has to be moved away for this purpose,” Gupta said Tuesday. “That is the reason we are asking Congress to act.”

Such funds could be used to test drugs on the street for xylazine, collect data on FAAX, invest in care for people exposed to FAAX and develop potential treatments for a xylazine-related overdose.

The medication naloxone, also known as Narcan, is an antidote for an opioid overdose, but people who have overdosed on a combination of opioids and xylazine may not immediately wake up after taking naloxone, as it may not reverse the effects of xylazine in the same way it does opioids.

“We need to recognize, first of all, that there is a shift that is occurring from organic compounds and substances like heroin and cocaine to more synthetics,” Gupta said of the state of the nation’s illicit drug crisis.

“Both the types of drugs have changed – from predominantly organic to predominantly synthetics – but the way drugs are bought and sold have also changed,” he said. “Now, all you need is a phone in the palm of your hand and a social media app to order and buy some of the most dangerous substances on planet Earth.”

Xylazine is just one of the many adulterants – or substances that are typically added to others – found in the nation’s illicit drug supply.

“All of a sudden, you can synthesize hundreds of compounds and kind of mix them together and see what does the best in the market,” Joseph Friedman, a researcher at the University of California, Los Angeles, told CNN in March. “People are synthesizing new benzodiazepines, new stimulants, new cannabinoids constantly and adding them into the drug supply. So people have no idea what they’re buying and what they’re consuming.”

Some of these adulterants may be as simple as sugar or artificial sweeteners added for taste or additives or fillers that bulk up the drug. Sometimes, they may be contaminants left over from the manufacturing process.

Addicted? How to get help

  • If you’re addicted to prescription drugs, help is available. You can call the Substance Abuse Mental Health Services Administration 24/7 hotline at 1-800-662-HELP(4357) or visit their website.
  • But all of these things can carry real-life health harms, says Naburan Dasgupta, an epidemiologist and senior scientist at the Gillings School of Global Public Health at the University of North Carolina, Chapel Hill.

    Like an opioid, xylazine can depress the respiratory system, so the risk of overdose multiplies when it’s combined with heroin or fentanyl.

    Also, “in the veterinary literature, we know that it causes a really bad severe form of anemia. And so when people are injecting heroin that’s contaminated with xylazine, they can end up with a near-fatal form of blood iron deficiency,” Dasgupta said in March. “We had one person here who ended up going to the hospital needing multiple blood transfusions. And it was all because of the xylazine.”

    US lawmakers are moving to classify xylazine as a controlled substance.

    In March, bipartisan legislation – the Combating Illicit Xylazine Act – was introduced in the House and Senate. It describes illicit xylazine as an “urgent threat to public health and safety” and calls for it to be a Schedule III drug under the Controlled Substances Act, a category on the five-level system for substances with moderate to low potential for physical or psychological dependence. Xylazine would be one level below opioids like fentanyl.

    “Our bipartisan bill would take important steps to combat the abuse of xylazine by giving law enforcement more authority to crack down on the illicit distribution of this drug, including by putting stiffer penalties on criminals who are spreading this drug to our communities,” Sen. Maggie Hassan, D-N.H., said in a statement in March.

    The bill would also require manufacturers to send reports on production and distribution to the DEA so the agency can ensure that the product is not being diverted to the black market.

    “This bill recognizes the dangers posed by the increasing abuse of animal tranquilizers by drug traffickers, and provides new tools to combat this deadly trend,” Sen. Chuck Grassley, R-Iowa, said in the statement.

    “It also ensures that folks like veterinarians, ranchers and cattlemen can continue to access these drugs for bona fide animal treatment.”

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    Concerned about the courts, some states and universities are stockpiling abortion drugs | CNN



    CNN
     — 

    With an eye on the courts, a growing number of Democratic-led states are stockpiling the pills that can be used for a medication abortion, the most common form of the procedure in the US.

    The officials want to be prepared, in case US District Judge Matthew Kacsmaryk’s decision to suspend the US Food and Drug Administration’s approval of mifepristone goes through, so medication abortions would still be available in their states for some period of time. But they’re taking different approaches to the idea.

    New York Gov. Kathy Hochul announced Tuesday that her state’s Department of Health would buy 150,000 doses of misoprostol, the other of the two drugs typically used in a medication abortion.

    Misoprostol can be used off-label for an abortion, without mifepristone, but patients often have to use more of it. It would not be covered by the court case, and if Kacsmaryk’s decision stands, the New York City’s Health Department tweeted, it will change to using this medication only.

    “Medication abortion continues to be available at our Sexual Health Clinics and NYC Health + Hospitals locations. Should mifepristone become unavailable, we will continue to make medication abortion accessible to all in NYC by shifting to a misoprostol-only treatment regimen,” the tweet said.

    The state says the 150,000 doses should represent a five-year supply of pills.

    “Anti-choice extremists have shown that they are not stopping at overturning Roe, and they are working to entirely dismantle our country’s reproductive health care system, including medication abortion and contraception,” Hochul said. “New York will always be a safe harbor for abortion care, and I am taking action to protect abortion access in our State and continue to lead the nation in defending the right to reproductive autonomy.”

    California is also stocking up on misoprostol.

    “While California still believes Mifepristone is central to the preferred regimen for medication abortion, the State negotiated and purchased an emergency stockpile of Misoprostol in anticipation of Friday’s ruling by far-right federal judge Matthew Kacsmaryk to ensure that California remains a safe haven for safe, affordable, and accessible reproductive care,” Gov. Gavin Newsom’s office said in a release Monday.

    California plans to purchase up to 2 million pills through CalRx, a state initiative set up to make drugs more affordable.

    The governor’s office said the state now has more than 250,000 pills on hand, which it purchased for about $100,000.

    California said it shared the terms of its purchase agreement with other members of the Reproductive Freedom Alliance, a nonpartisan coalition of 21 governors who are committed to protecting reproductive rights, and who might also be interested in taking such action.

    Another member of that alliance, Washington Gov. Jay Inslee, announced last week that his state bought a three year-supply of mifepristone, the drug at the center of Kacsmaryk’s ruling.

    Inslee directed the state Department of Corrections – which has a pharmacy license and is legally able to buy medications – to buy the drug last month, he said, and the shipment was delivered March 31. The University of Washington also purchased 10,000 doses.

    Lawmakers are introducing a bill to authorize officials to distribute or sell the medication to licensed providers throughout the state.

    “This Texas lawsuit is a clear and present danger to patients and providers all across the country. Washington will not sit by idly and risk the devastating consequences of inaction,” Inslee said. “Washington is a pro-choice state, and no Texas judge will order us otherwise.”

    In the meantime, its attorney general, Bob Ferguson, is helping lead a multistate lawsuit to protect access to mifepristone.

    On Friday, the same day Kacsmaryk’s ruling came down, a federal judge in Washington ordered the US not to make any changes that would restrict access to mifepristone in the territories that brought the lawsuit: 17 states and the District of Columbia.

    On Monday, Massachusetts Gov. Maura T. Healey announced that at her request, the University of Massachusetts and health care providers have also taken action to stockpile doses of mifepristone.

    The governor’s office said last week that the university bought about 15,000 doses of mifepristone, enough to cover the commonwealth for about a year, and the pills are expected to arrive this week. Local health care providers have agreed to buy more, and the government agreed to set aside $1 million to pay for those doses.

    The Massachusetts governor also signed an executive order confirming protections for medication abortion under existing law.

    “Here in Massachusetts, we are not going to let one extremist judge in Texas turn back the clock on this proven medication and restrict access to care in our state,” Healey said. “The action we are taking today protects access to mifepristone in Massachusetts and protects patients and providers from liability. In Massachusetts, we stand for civil rights and freedom. We will always protect access to reproductive health care, including medication abortion.”

    Danco Laboratories, the manufacturer of the brand-name version of mifepristone, says that orders for the drug have increased substantially in recent months and are significantly higher than they were at this time last year.

    Demand for mifepristone is up across all types of customers, including clinics, pharmacies and individual providers, said Abby Long, Danco’s director of public affairs. But Massachusetts is the only state that has requested an especially large number of pills from the company.

    Maine Gov. Janet Mills, who called the Texas decision “reckless” and a “fundamental assault on women’s rights,” said Monday that her administration is evaluating its options, “including procuring mifepristone if needed, to protect access to medication abortion for Maine women.”

    The Connecticut governor’s office said Wednesday that it is also monitoring the situation.

    Oregon Gov. Tina Kotek’s office said in an email Wednesday that she has directed the Oregon Health Authority to “explore all available avenues for ensuring Oregon is prepared should Mifepristone become less available. That includes evaluating the supply of Mifepristone and Misoprostol and consulting with providers to better understand the potential impact on the provision of abortion and reproductive health care and what additional support might be necessary.”



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    New drug shortages in the US increased nearly 30% in 2022, Senate report finds | CNN



    CNN
     — 

    When a pharmaceutical plant in Shanghai that made contrast material for radiological scans shut down last year, half the United States’ supply of the radioactive substance immediately became unavailable. Health care providers had to make difficult choices about who got potentially lifesaving tests.

    “I work in the VA system. This impacted veterans literally overnight, where we needed to make decisions about whether we were going to allow some scans to be done to evaluate someone’s cancer or treat someone’s heart disease,” said Dr. Andrew Shuman, a head and neck surgeon who works at the US Department of Veterans Affairs and is an associate professor at University of Michigan Health. “Veterans deserve better and we should not be reliant on a supply chain that’s that tenuous.”

    Shuman was one of several experts who testified Wednesday in front of the US Senate’s Homeland Security and Governmental Affairs Committee that shortages like these make the US drug and medical supply far too vulnerable and put national security at risk.

    New drug shortages in the US increased nearly 30% between 2021 and 2022, according to a report commissioned by the Senate that was published Wednesday. At the end of 2022, drug shortages experienced a record five-year high of 295 active drug shortages, according to the report. It also found that while the average drug shortage lasts about 1.5 years, more than 15 critical drug products have been in shortage for over a decade.

    Many Americans became aware of national shortages during the Covid-19 pandemic. In one of the most notable examples last year, anxious parents reported going from store to store in search of common pain relievers and antibiotics during an especially rough RSV season.

    Increased demand can cause shortages, but the way drugs are made and sold for the US market is also a large part of the problem, the experts said Wednesday.

    Shortages of common and specialized drugs have been a constant for decades, the report says.

    “Since 2007, the FDA identified an average of over 100 separate drug shortages per year. In 2011, the FDA identified a whopping 267 drugs in short supply and despite possessing the most innovative medical industry in the world, the US is unable to maintain a consistent supply of the most crucial medicines,” ranking committee member Sen. Rand Paul, R-Kentucky, said at the hearing.

    Under the current regulatory system, the problem won’t probably get better any time soon, the experts said.

    “Even drugs needed to treat childhood and adult cancers, including some that have simply no alternative treatment, are regularly in shortage. And while some shortages may only be an inconvenience, others have had devastating impacts on patient care,” said Sen. Gary Peters, D-Michigan, who commissioned the new report.

    At its peak last year, there were 295 drugs in shortage, Peters said. In years past, the number has been even higher. The US Food and Drug Administration currently lists 130 drugs in shortage.

    Some common medications like Adderall have been on the list for months. Many others like albuterol sulfate, which doctors use to treat breathing problems, are a staple in hospitals.

    Albuterol has been in short supply since last summer, according to the American Society of Health-System Pharmacists, and it’s been on the FDA shortage list since October. That particular shortage is expected to get even worse because a major supplier to US hospitals shut down at the beginning of March.

    The albuterol shortage shows how consolidation in the market has been a real problem for a number of drugs, experts say. In a consolidated market, labor issues and manufacturing disruptions can make drugs particularly hard to find.

    Only one company made certain albuterol products used for continuous nebulizer treatment. The manufacturer that shut down, Akorn Operating Co., filed for Chapter 11 bankruptcy in May 2020.

    Lower-priced drugs, generics like albuterol and certain antibiotics like amoxicillin tend to have a higher likelihood of being in shortage, according to an analysis presented at the hearing by US Pharmacopeia, a nonprofit that works to strengthen the global supply chain of medicines and publishes a set of guidelines for medicines. Economics is largely to blame.

    “Manufacturers only receive pennies per dose for some of these drugs,” testified Dr. Vimala Raghavendran, senior director of the pharmaceutical supply chain center at US Pharmacopeia. That means there is little financial incentive for multiple manufacturers to make a generic medicine.

    Another problem is with the suppliers of the ingredients that make the drugs. Nearly 80% of the manufacturing facilities that produce these active pharmaceutical ingredients are outside the US, the Senate report says. And there is no one agency that keeps track of all these manufacturers, so it is difficult to get a big picture of where the next problem will come from, Raghavendran said.

    “Policymakers are flying blind in our understanding of US reliance on other countries for critical ingredients used in the manufacture of medicines,” she said.

    Many ingredient makers are based in China or India. If there are work stoppages there, as during the pandemic, it can affect thousands of products.

    Consolidation in ingredient manufacturing was a problem even before the pandemic. In 2018, regulators discovered that material created by a Chinese-based company, Zhejiang Huahai Pharmaceutical Co., that went into certain heart drugs was contaminated with a potential cancer-causing impurity. Thousands of drugs had to be recalled in dozens of countries, causing shortages around the world.

    In too many cases, the experts said Wednesday, it is not clear why drugs wind up in such short supply. Part of the problem is a lack of transparency about quality results and inspections information. The cause of a specific shortage may be known to regulators, but the information is rarely publicly available.

    “FDA sees really clear quality differences between products and manufacturing sites, but this information is confidential, and it’s not available to people making the purchases. Buyers can’t easily see the reliability of manufacturing operations,” Erin Fox, associate chief pharmacy officer at the University of Utah, said at the hearing.

    Fox urged the government to develop a rating system for pharmaceutical manufacturing reliability. The FDA has been working on quality metrics ratings, but it doesn’t intend to make the scores publicly available, she said.

    Without knowing whether a company is reliable, a health care system can’t always anticipate that a facility is likely to be shut down and create a shortage. A government rating system could help health systems pick more reliable suppliers, Fox said. Because it is so difficult to anticipate what drugs will be in short supply, most health systems must employ someone full-time to exclusively deal with shortage management.

    At Michigan, Shuman said, there are multiple pharmacists whose full-time jobs are to manage drug shortages.

    “Not every hospital has that resource. Patients should not have better access to scarce drugs based on the hospital they go to,” he said.

    Shortages have a direct negative impact on patients and on their providers. Studies show that people often have worse health outcomes when they can’t be treated with the appropriate medication and even, in some cases, when alternative drugs are used.

    “One of the challenges of drug shortages is that it requires hospitals to essentially MacGyver different treatment opportunities and regimens, which is not necessarily evidence for data based,” Shuman said.

    People with sepsis, for instance, had a higher mortality rate when there was a shortage of the drug norepinephrine.

    With shortages of cancer drugs, Shuman described “a tragedy that’s happening in slow motion.”

    He cited etoposide, a medicine used to manage a wide variety of cancers, including those of the prostate, bladder, stomach and lung. It’s a low-cost drug at $50 a vial and has been on the market for more than 40 years.

    In 2018, when a manufacturing delay caused a national shortage, some doctors had to make terrible choices.

    “Which of our patients with cancer should get it? How can we prioritize between American lives? Should our limited vials go to an older woman who was just diagnosed with lung cancer, a young man who’s already been successfully taking it for testicular cancer, or a baby with neuroblastoma and aggressive cancer for which this drug is recommended but others might substitute?” Shuman said. “As a doctor who’s devoted my life to fighting cancer, it’s hard to express how horrible that is.”

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    Ohio, Pennsylvania offer health services following train derailment, but some residents feel skeptical | CNN


    Darlington Township, Pennsylvania
    CNN
     — 

    The municipal building in tiny Darlington Township, Pennsylvania, was buzzing with activity on Wednesday afternoon as a stream of locals arrived seeking information on health screenings, chemical exposures and well testing.

    Darlington, home to about 1,800 people, sits just over the border from East Palestine, Ohio, the site of a catastrophic train derailment and controlled burn of toxic chemicals that sent black smoke billowing over the area for days in early February. Residents here say the wind blew acrid smoke into their homes and coated their cars with a fine ash. State and federal officials gave East Palestine residents the all-clear to return to their homes days later.

    But residents in both places are now wondering whether their water is safe to drink and their air safe to breathe. The characteristic floral, fruity odor of butyl acrylate still permeates some homes and wafts up from some of the impacted streams that run through the town. Some say they’re experiencing symptoms – cough, headaches, rashes, watering eyes and dripping noses – that might be related to a chemical exposure.

    Government-run community resource centers and health clinics have opened in East Palestine and Darlington to answer residents’ questions and connect them to any care they might need. More than 140 people have come to the clinic in East Palestine since it first opened on February 21, according to the Ohio Department of Health. The Darlington center opened February 28, and more than 200 people visited in its first two days, according to the Pennsylvania Department of Health.

    Still, some residents are skeptical of the clinics, and the response overall. While many residents who live near the derailment site are following the testing for chemicals in the air and water, what they really want to know is whether they’ve had chemicals from the accident in their bodies, and whether those chemicals have impacted their health.

    They’re swapping information online, and seeking out blood tests they hope will identify potential problems. Some are seeking out medical care so there’s a record of their symptoms.

    On the advice of a lawyer, Ron Book and his wife came to the East Palestine Health Assessment Clinic on Wednesday afternoon to have their illnesses documented. Book says since the derailment, his nose has been running constantly. He has a sore throat, and he feels stuffy.

    “It’s like I have a cold, but I don’t have a cold,” he said.

    Book said he saw a doctor who took his vitals and advised him to keep up with the regular blood work that he needs for his ongoing treatment for prostate cancer. He was inside for about 45 minutes, and said the experience was helpful, and about what he expected.

    “They can’t heal you,” Book says, “because nobody knows about this chemical.”

    At the Darlington center, tables were staffed with experts to answer questions about the chemicals involved in the train derailment, free well and air testing for residents, and potential impacts to area farms.

    There were pamphlets on how to manage stress following a disaster and mental health counselors, as well as Zuko, a 3-year-old Great Dane therapy dog.

    Residents are also invited to take a nine-page questionnaire to contribute data to a newly launched Assessment of Chemical Exposure, or ACE, study, which is being conducted by the federal Agency for Toxic Substances and Disease Registry. Health investigators can use their data to inform a study into the health effects associated with the chemical exposures after the derailment.

    People could see a doctor, or get referrals for a primary care physician.

    “I think approximately 40% of people sought some sort of clinical evaluation,” said Nate Wardle, who is the special response project manager for the Pennsylvania Department of Health.

    Wardle said when they opened the clinic, they weren’t sure what to expect – whether residents would be angry that it took more than three weeks to get them these services. So far, he said, people have been grateful and eager to get the help.

    Jim Denes, who is 71, came to the health clinic in Darlington Township on Wednesday. He said he lives less than 2 miles from the accident site. On Friday of last week, Denes said he felt awful.

    “I was just miserable. I was trying to cough up stuff, I couldn’t,” Denes said. “My eyes were all runny and watery.”

    He said he took a Covid-19 test, but it was negative.

    Denes said he’s extremely tired and had to drag himself to the clinic, but he’s glad he did. The doctor he saw diagnosed him with bronchitis and prescribed an antibiotic. The clinic was a lot closer than his regular doctor in Ellwood City, and he was able to walk in and be seen without a wait.

    Denes said the doctor told him he couldn’t say whether it was related to the chemicals that were spilled or not.

    Some residents said they have no interest in going to government-run health clinics.

    “I honestly, at this point, don’t know who’s working with who and I really just don’t trust anything that has to do with the government right now,” said Giovanni Irizarry, whose family lives within a mile of the train derailment site.

    In the evening hours of February 3, his wife Ashley Irizarry was driving to work when she noticed she could see thick black smoke hanging in the air, even though it was dark. Eventually, she saw the raging fire along the railroad tracks.

    That night, Ashley had a red rash on her cheeks, her eyes were burning and red and a metallic chemical smell had burned her nose and throat. On Saturday, Giovanni said, his lips burned like he’d had scalding hot soup. Giovanni’s mother, who was living with them, developed a cough so severe she couldn’t catch her breath. The Irizarrys evacuated on Sunday to Boardman, Ohio, about 15 miles away.

    They returned home on Saturday, February 11, in anticipation of school restarting on Monday.

    As soon as they got close to town, Giovanni said, “I immediately felt my lips like start that burning sensation.”

    He and his mom started coughing. His wife and kids developed debilitating and unrelenting headaches. After the kids came home from school on Monday, both started vomiting.

    Ashley says she has taken the family to their primary care doctor, an urgent care and the hospital.

    “It was not getting better,” she said.

    Medical records reviewed by CNN show Ashley was prescribed a steroid and given a chest X-ray due to “toxic effects of gas exposure.” Her son was also diagnosed with chemical exposure.

    When the doctors looked into her nose and throat they told her ” ‘Your mucous membranes are all pale. Like they were burned,’ but they didn’t know what to do at this time,” Ashley said in an interview with CNN on Wednesday.

    On public Facebook groups, residents are sharing names of providers who will order blood testing for chemical exposures, which isn’t something either of the government-run clinics is doing currently. Some have even tried to do their own research to try to identify the medical codes needed to order tests for specific chemicals in the blood from large labs.

    Instead of going to the government health clinic, on Wednesday, Ashley went to see their chiropractor, Richard Tsai, who has been ordering certain blood tests for existing patients who think they have having health problems connected to chemical exposures from the derailment.

    Tsai’s practice, Blackhawk Chiropractic, is right next door to the Darlington Township community resource center and clinic that was opened by the Pennsylvania Department of Health and other state agencies this week.

    The tests Tsai orders are general and standard in medical care – a test called a complete blood count, which measures levels of red cells, white cells, and clotting factors in the blood; and a test called a basic metabolic panel, which measures blood sugar, electrolytes, and kidney function. If his patients ask for it, he also orders a more specialized test that measure exposure to the chemical benzene. In the past two days, he estimates about 15 patients have asked him for blood testing.

    Tsai, who lives in East Palestine, says he’s been frustrated by the government’s response.

    “We shouldn’t be having to do this,” Tsai said, in an interview with CNN on Wednesday.

    “Why are people having to figure this out on Facebook? These people need to know where to go and what’s available.”

    Dr. Bruce Vanderhoff, director of the Ohio Department of Health, pushed back against the idea that the government wasn’t giving people enough information. He said that during the course of the medical assessment at the health clinic, the clinic physician might make recommendations for further testing, but that would be done by the person’s regular doctor.

    If people don’t have a doctor that they see regularly, Vanderhoff said they are trying to help residents find one.

    Vanderhoff said it would be important for the primary care providers to continue to monitor changes in a patient’s overall health.

    “Because when we look at the chemicals involved, especially the primary chemical vinyl chloride, there is simply not a blood test that we can do or a urine test that we can do that would say ‘Aha! You had an exposure,’ ” Vanderhoff said. “That would be great, but that’s just not the case.”

    Tsai, who lives in East Palestine, said that he’s legally able to order medical tests, so he does, within limits. “Why wouldn’t you do that?” he said.

    Dr. Erin Haynes, the chairperson of the department of epidemiology and environmental health at the University of Kentucky, says she thinks it’s sound for residents to seek out common blood tests.

    In an email to CNN, Haynes said in addition to a complete blood count and basic metabolic panel she would add a liver function test, since vinyl chloride, one chemical that was on the train, can damage the liver.

    But Haynes says trying to test for specific chemicals may be a step too far.

    “Testing for chemical exposure at this point is a difficult,” says Haynes, who has helped impacted communities investigate environmental exposures. “The high levels are now gone, and we aren’t exactly sure what to measure in blood or urine since we don’t know what chemicals formed during the fire. There are suspects, but not clear answers yet.”

    Haynes said it would be ideal to collect blood and urine samples now, but store them for later testing, but this would be difficult for a local clinic to do.

    Overall, Haynes says the government’s response to chemical spills like this one leaves something to be desired.

    “The community is in dire need of an organized and coordinated health monitoring study that includes exposure assessment,” said Haynes, who hopes to bring such a study to the area soon.

    Down the road, she says, there’s still a lot to learn about the health impacts of environmental exposures to toxins.

    “We also need more research on what these chemicals do and methods for rapid testing,” Haynes said. “Communities with railroad must know what is moving through their community, when and how much. They also must receive training on how to safely respond when a disaster occurs.”

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    Beware the budget butt lift, regulators warn amid social media-inspired boom | CNN

    In hindsight, Nikki Ruston said, she should have recognized the red flags.

    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 rules in 2019 meant to make the procedures safer. More than three years later, data shows deaths still occur.

    Patient advocates and some surgeons – including those who perform the procedure themselves – anticipate the problem will only get worse. Emergency restrictions 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 Dr. Bob Basu, 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, according to data 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 2017 report 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 Surgeons for Safety. 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, Dr. Constantino Mendieta, wrote in an August editorial 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 draft bill with the state legislature 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 recent article 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 Dr. Mark Mofid, 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 serious risks 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 (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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    Celebrities may have helped shape anti-vaccine opinions during Covid-19 pandemic, study finds | CNN



    CNN
     — 

    Covid-19 vaccines are known to be safe and effective, and they’re available for free, but many Americans in the US refuse to get them – and a recent study suggests that celebrities may share some of the blame for people’s mistrust.

    Celebrities have long tried to positively influence public health, studies show, but during the Covid-19 pandemic, they also seemed to have a large influence on spreading misinformation.

    Decades ago, in the 1950s, people could see stars like Elvis Presley, Dick Van Dyke and Ella Fitzgerald in TV ads that encouraged polio vaccination. This celebrity influence boosted the country’s general vaccination efforts, and vaccination nearly eliminated the deadly disease.

    In 2021, US officials used celebrities in TV ads to encourage more people to get vaccinated against Covid-19. Big names like lifestyle guru Martha Stewart, singer Charlie Puth and even Senate Minority Leader Mitchell McConnell showed up in spots that had billions of ad impressions.

    The world isn’t restricted to only three TV networks any more, so celebrities like actress Hilary Duff, actor Dwayne “The Rock” Johnson, singer Dolly Parton and even Big Bird also used their enormous presence on Instagram and Twitter to promote a pro Covid-19 vaccine message.

    But social media also became a vehicle for celebrities to cast doubt about the safety and effectiveness of the vaccine and even to spread disinformation about Covid.

    Their negative messages seemed to find an audience.

    For their study, published in the journal BMJ Health & Care Informatics, researchers examined nearly 13 million tweets between January 2020 and March 2022 about Covid-19 and vaccines. They designed a natural language model to determine the sentiment of each tweet and compared them with tweets that also mentioned people in the public eye.

    The stars they picked to analyze included people who had shared skepticism about the vaccines, who had Covid-related tweets that were identified as misinformation or who retweeted misinformation about Covid.

    They included rapper Nicki Minaj, football player Aaron Rodgers, tennis player Novak Djokovic, singer Eric Clapton, Sen. Rand Paul, former President Donald Trump, Sen. Ted Cruz, Florida Gov. Ron DeSantis, TV host Tucker Carlson and commentator Joe Rogan.

    The researchers found 45,255 tweets from 34,407 unique authors talking about Covid-19 vaccine-related issues. Those tweets generated a total of 16.32 million likes. The tweets from these influencers, overall, were more negative about the vaccine than positive, the study found. These tweets were specifically more related to antivaccine controversy, rather than news about vaccine development, the study said.

    The highest number of negative comments was associated with Rodgers and Minaj. Clapton had “very few” positive tweets, the study said, and that may have had an influence, but he also caught flak for it from the public.

    The most-liked tweet that mentioned Clapton and the vaccine said, “Strongly disagree with [EC] … take on Covid and the vaccine and disgusted by his previous white supremacist comments. But if you reference the death of his son to criticize him, you are an ignorant scumbag.”

    Trump and Cruz were found to have the most substantial impact within this group, with combined likes totaling more than 122,000.

    They too came in for criticism on the topic, with many users wondering whether these politicians were qualified to have opinions about the vaccines. The study said the most-liked tweet mentioning Cruz was, “I called Ted Cruz’s office asking to make an appointment to talk with the Senator about my blood pressure. They told me that the Senator was not qualified to give medical advice and that I should call my doctor. So I asked them to stop advising about vaccines.”

    The most-liked tweet associated with Rogan was an antivaxx statement: “I love how the same people who don’t want us to listen to Joe Rogan, Aaron Rodgers about the covid vaccine, want us to listen to Big Bird & Elmo.”

    Posts shared by news anchors and politicians seemed to have the most influence in terms of the most tweets and retweets, the study found.

    “Our findings suggest that the presence of consistent patterns of emotional content co-occurring with messaging shared by those persons in the public eye that we’ve mentioned, influenced public opinion and largely stimulated online public discourse, for the at least over the course of the first two years of the Covid pandemic,” said study co-author Brianna White, a research coordinator in the Population Health Intelligence lab at the University of Tennessee Health Science Center – Oak Ridge National Laboratory Center for Biomedical Informatics.

    “We also argue that obviously as the risk of severe negative health outcomes increase with the failure to comply with health protective behavior recommendations, that our findings suggest that polarized messages from societal elite may downplay those severe negative health outcome risks.”

    The study doesn’t get into exactly why celebrity tweets would have such an impact on people’s attitudes about the vaccine. Dr. Ellen Selkie, who has conducted research on influence at the intersection of social media, celebrity and public health outcomes, said celebrities are influential because they attract a lot of attention.

    “I think part of the influence that media have on behavior has to do with the amount of exposure. Just in general, the volume of content that is focused on a specific topic or on a specific sort of interpretation of that topic – in this case misinformation – the repeated exposure to any given thing is going to increase the likelihood that it’s going to have an effect,” said Selkie, who was not involved in the new research. She is an adolescent health pediatrician and researcher with UW Health Kids and an assistant professor of pediatrics at the University of Wisconsin School of Medicine and Public Health.

    Just as people listen to a friend’s thoughts, they’ll listen to a celebrity whom they tend to like or identify with because they trust their opinion.

    “With fandoms, in terms of the relationship between musical artists and actors and their fans, there is this sort of mutual love that fans and artists have for each other, which sort of can approximate that sense that they’re looking out for each other,” Selkie said.

    She said she would be interested to see research on the influence of celebrities who tweeted positive messages about the Covid-19 vaccine.

    The authors of the study hope public health leaders will use the findings right away.

    “We argue this threat to population health should create a sense of urgency and warrants public health response to identify, develop and implement innovative mitigation strategies,” the study says.

    Exposure to large amounts of this misinformation can have a lasting impact and work against the public’s best interest when it comes to their health.

    “As populations grow to trust the influential nature of celebrity activity on social platforms, followers are disarmed and open to persuasion when faced with false information, creating opportunities for dissemination and rapid spread of misinformation and disinformation,” the study says.



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    Recently identified inflammatory disease VEXAS syndrome may be more common than thought, study suggests | CNN



    CNN
     — 

    David Adams spent half a decade fighting an illness he couldn’t name. He was in and out of the hospital several times per year. His inflamed joints made his hands feel like they had been squeezed into gloves – and he could no longer play his beloved classical and jazz guitars.

    He had constant fevers and fatigue. He even developed pain and swelling in his genitalia, which was his first sign that something was really wrong.

    “At the turn of the year 2016, I started with some really painful effects in the male anatomy,” said Adams, now 70. “After that, again, a lot of fatigue – my primary care physician at that point had blood tests done, and my white blood cell count was very, very low.”

    Next, Adams, who lives in Alexandria, Virginia, saw a hematologist, a pulmonologist, a urologist, a rheumatologist and then a dermatologist. Some of them thought he might have cancer.

    Adams’ symptoms continued, with even more fatigue, pneumonia and a large rash below his waist. He tried at least a dozen medications, saw about two dozen doctors, and nothing helped.

    In 2019, worsening symptoms forced him to retire early from his decades-long career in clinical data systems. But he remained in the dark about what was causing the problems.

    Finally, in 2020, scientists at the National Institutes of Health discovered and named a rare genetic disorder: VEXAS syndrome, which wreaks havoc on the body through inflammation and blood problems.

    Adams had an appointment with his rheumatologist at the time, and when he walked into the office, he saw that his physician “was giddy like a little kid.”

    In his doctor’s hands was a copy of a paper in the New England Journal of Medicine detailing the discovery of VEXAS syndrome.

    Adams had his answer.

    “For the first time, there was a one-to-one correlation of symptoms,” he said. “It was quite a shock.”

    An estimated 1 in about 13,500 people in the United States may have VEXAS syndrome, a new study suggests, which means the mysterious and sometimes deadly inflammatory disorder may be more common than previously thought.

    In comparison, the genetic disorder spinal muscular atrophy affects about 1 in 10,000 people and Huntington’s disease occurs in about 1 in every 10,000 to 20,000 people.

    Since its discovery, occasional VEXAS cases have been reported in medical research, but the study reveals new estimates of its prevalence.

    The research, published Tuesday in the journal JAMA, suggests that about 1 in 13,591 people in the US have mutations in the UBA1 gene, which develop later in life and cause VEXAS syndrome.

    “This study is demonstrating that there’s likely tens of thousands of patients in the US that have this disease, and the vast majority of them are probably not being recognized because physicians aren’t really considering this as a diagnosis more broadly,” said Dr. David Beck, an assistant professor in the Department of Medicine at NYU Langone Health and a lead author of the study.

    VEXAS syndrome is not inherited, so people who have it don’t pass the disease to their children. But the UBA1 gene is on the X chromosome, so the syndrome is an X-linked disease. It predominantly affects men, who carry only one X chromosome. Women have two X chromosomes, so if they have a mutation in a gene on one X chromosome but not the other, they are generally unaffected.

    “It’s present in 1 in 4,000 men over the age of 50. So we think it’s a disease that should be thought about in terms of testing for individuals that have the symptoms,” said Beck, who also led the federal research team that identified the shared UBA1 mutation among VEXAS patients in 2020.

    “The benefit of VEXAS syndrome is that we have a test. We have a genetic test that can help directly provide the diagnosis,” he said. “It’s just a question of patients who meet the criteria – who are older individuals with systemic inflammation, low blood counts, who really aren’t responding to anything but steroids – then advocating to their doctors to get genetic testing to get a diagnosis.”

    Adams, who became a patient of Beck’s, said that finally getting a diagnosis – and understanding the cause of his symptoms – was life-changing.

    “It really was incredibly freeing to have the diagnosis,” he said.

    “You can’t fight your enemy unless your enemy has a name,” he added. “We finally had something where we could point to and say, ‘OK, we understand what’s going on. This is VEXAS.’ “

    For the new study, Beck and his colleagues at the NIH, New York University, Geisinger Research and other institutions analyzed data on 163,096 patients in a health system in central and northeastern Pennsylvania, from January 1996 to January 2022, including electronic health records and blood samples.

    Eleven of the patients had a disease-causing UBA1 variant, and a 12th person had a “highly suspicious” variant.

    Only three of the 12 are still alive. A five-year survival rate of 63% has been previously reported with VEXAS.

    Among the 11 patients in the new study who had pathogenic variants in UBA1, only two were women. Seven had arthritis as a symptom, and four had been diagnosed with rheumatologic diseases, such as psoriasis of the skin or sarcoidosis, which causes swollen lumps in the body. All had anemia or low blood cell counts.

    “None had been previously clinically diagnosed with VEXAS syndrome,” Beck said.

    The finding “is emphasizing how it’s important to be able to pick these patients out, give them the diagnosis and start the aggressive therapies or aggressive treatments to keep their inflammation in check,” he said.

    VEXAS – an acronym for five clinical characteristics of the disease – has no standardized treatment or cure, but Beck said symptoms can be managed with medications like the steroid prednisone or other immunosuppressants.

    “But the toxicities of prednisone over years is challenging. There are other anti-inflammatory medications that we use, but they’re only partially effective at the moment,” he said. “One treatment for individuals that we’ve seen that’s very effective is bone marrow transplantation. That comes with its own risks, but that’s just underscoring the severe nature of the disease.”

    Although the new study helps provide estimates of the prevalence and symptoms of VEXAS syndrome, the data is not representative of the entire United States, and Beck said that more research needs to be done on a larger, more diverse group of people.

    Some men might be hesitant to seek medical care for VEXAS symptoms, but Adams said that doing so could save their life.

    “Eventually, it’s going to get so bad that you’ll end up like my first hospitalization, where you’re on death’s door,” Adams said. “You don’t want to be in that situation.”

    Adams has been taking prednisone to ease his symptoms, and it’s helped. But because steroid use can have side effects such as cataracts and weight gain, he has been working with his doctors to find other therapies so he can reduce his intake of the medication.

    Beck and his colleagues are studying targeted therapies for VEXAS syndrome, as well as conducting stem cell bone marrow transplant trials at the NIH.

    “There are many different facets of the disease,” Dr. Bhavisha Patel, a hematologist and researcher in the National Heart, Lung and Blood Institute’s Hematopoiesis and Bone Marrow Failure Laboratory, said in an NIH news release last month.

    “I believe that is what is challenging when we think about treatment, because it’s so heterogeneous,” said Patel, who was not involved in the new study.

    “Both at NIH and worldwide, the groups that have dedicated themselves to VEXAS are looking for medical therapies to offer to other patients who don’t qualify for a bone marrow transplant,” she said. “We continue to collaborate on many projects in order to categorize this disease further and ultimately come up with the best treatment options.”

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