Exclusive: An investigation into coercive sterilization for women with sickle cell disease

And: genetic risk of breast cancer in women of African descent 

May 21, 2024 Check out STAT+

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By Annalisa Merelli General Assignment Reporter

Buongiorno readers. A year ago, my colleague Eric Boodman was looking into a research paper on the pregnancy complications faced by some sickle cell disease patients when he started hearing stories about women with the disease who had been discouraged from having children. That led him into a deep investigation of how women with sickle cell are pushed toward sterilization procedures they aren't sure about — and the downstream impacts of these procedures. The first chapter is out today.

EXCLUSIVE How women with sickle cell disease are pushed toward sterilization EMILY KASK for STAT The term "coercive sterilization" brings to mind some of the vilest moments of America's history — but it doesn't strictly belong to the past. A STAT investigation found that women with sickle cell disease, a condition most common among people of African descent, have felt pushed towards tubal ligations and hysterectomies even when they aren't sure about ending their reproductive life (tubal ligation can be reversed, though it's costly and isn't guaranteed to work).  In the first installment of his series Coercive Care, STAT's Eric Boodman looks at how interventions billed as lifesaving — pregnancy for sickle cell patients is higher risk, and the disease is hereditary — carry echoes of eugenics. Though patients do give consent, it isn't always fully informed. "I just felt like, I guess this is for the best. But it wasn't the best for me. I guess it was the best for them, because they didn't have to deal with another sickle cell patient coming into their office saying they're pregnant," one of the patients told Eric. Read more here. h5n1 bird flu FDA identifies states with milk samples containing H5N1 virus fragments A bird flu update from Megan Molteni: In mid-April, the majority of milk products on shelves in a handful of states likely contained traces of the H5N1 bird flu virus, according to new data released Monday by the FDA. Milk processed in big dairy-producing states like California, New York, and Wisconsin were free of any signs of H5N1, at least when the samples were collected. But in some states with known outbreaks in dairy cattle — like Kansas and Texas — half or more of milk samples tested positive for genetic remnants of H5N1. It also showed up at high rates in states without reported cases, including Oklahoma and Kentucky. Some scientists have said the prevalence of the virus in the commercial milk supply is evidence the virus is more widespread than official numbers indicate. But it's hard to read more into the latest analysis, which represents a snapshot in time and doesn't say where the milk was produced. Meanwhile, Helen Branswell reports that scientists have managed to generate a full genetic sequence of H5N1 virus from milk. As dairy farmers remain reluctant to allow testing of their cattle, the scientists suggest the development means commercially purchased milk could be used to monitor the outbreak and to check for changes in the virus over time. Read more. technology A new device could treat paralysis without surgery A spinal cord stimulator combined with rehab therapy successfully improved hand and arm function in 72% of participants in a study published on Monday in Nature Medicine. Stimulators have recently gained popularity as a treatment for spinal cord injuries, though they are typically implanted. But this device — which medical device startup Onward Medical submitted to the FDA for approval in April — delivers stimulation through the skin, so it doesn't require surgery, report STAT's Lizzy Lawrence and Timmy Broderick.  Not all experts think the device has the potential to make a big impact in paralysis treatment — especially because it's unclear how the device aids movement. "It may be a step forward, but it's definitely not the answer," said Dimitry Sayenko, a neurosurgeon who was not involved in the study. But patients see small improvements in function and independence as crucial. "There's no miracles in spinal injury, but tiny gains can be life changing," said Melanie Reid, a study participant. Read more.

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first opinion What if AI were a physician's friend, and not a foe? ADOBE There are many reasons for physicians to be suspicious of artificial intelligence. Technology has burned them before: Most are still feeling the fallout of the chaotic introduction of electronic health records, and the extra work they entail. But history doesn't need to repeat itself, writes Jeffrey Millstein, the regional medical director of Penn Primary Care, in a new First Opinion.  He argues that AI has enormous potential if doctors can see it as a partner — one that can help hone a diagnosis, deal with the dreaded electronic records, connect patients with treatments for rare conditions, and take on some of the menial tasks that lead to burnout. But it's important not to think AI can, by itself, deal with medical issues, not even the ones that might seem "simple." For those, a human mind, and ear, is still irreplaceable. More here. cancer Genetic variants for breast cancer risk in women of African ancestry Researchers have long known that certain gene variants can increase breast cancer risk. Most of those findings are based on studies of women of European descent. But last week, the results of a study of 40,000 women of African descent were published in Nature Genetics, providing new insight into breast cancer risk for an underrepresented population, reports my colleague Angus Chen.  By compiling results from 30 studies, researchers identified 12 gene variants significantly associated with breast cancer, three of which were linked with triple negative breast cancer. The study is "definitely a big step forward for achieving racial equity," according to Swati Biswas, a statistician and cancer researcher at the University of Texas at Dallas who did not work on the study. Read more. OUTBREAKS CDC warns of meningococcal disease cases linked to pilgrimage travel Since April, 12 people have contracted meningococcal disease in connection to travels to the Kingdom of Saudi Arabia for Umrah, a pilgrimage to Mecca that can happen anytime during the year. As the larger Hajj pilgrimage is scheduled for June, the Centers for Disease Control and Prevention is reminding physicians that travelers aged a year or older should have a current quadrivalent meningococcal vaccination, which is routine in the U.S.  The CDC also warned doctors to be on higher alert for possible signs of meningococcal disease, including fever, headache, stiff neck, and light sensitivity. Symptoms can worsen quickly, becoming life-threatening in a matter of hours, and fatality is 10% to 15%, even with antibiotic treatment. Anyone who has been in contact with people with the disease should receive a prophylactic antibiotic course.

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Thanks for reading! More tomorrow, Nalis

annalisa.merelli@statnews.com

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