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Exclusive: Part 2 of STAT’s investigation into coercive care for women with sickle cell disease 

May 28, 2024
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Health Tech Correspondent

Good morning! I heard a chilling story from a doctor at a recent conference: A patient who couldn't get an appointment with him asked, expectantly, if the AI version of him was available instead. If wait times are bad enough to push patients to computational models out of desperation, something's gone horribly wrong in health care. On to the news, after the long weekend!

exclusive

A 'deal with the devil': A doctor would only treat a woman's sickle cell pain if she didn't have an abortion

Screenshot 2024-05-24 at 3.58.00 PM-1

Michael Starghill for STAT 

In Part 2 of STAT's yearlong investigation into the systematic denial of reproductive autonomy for people with sickle cell disease, Eric Boodman highlights a troubling incident: A woman's pain management specialist in Texas agreed to treat her only if she agreed not to have an abortion, despite her fears that pregnancy complications could kill her. "He told me that he would give me pain medicine while I was in the hospital if I decided to keep the baby," she told Eric. Read that story here.

Last week, Eric reported on another facet of the coercive care that has faced patients with sickle cell disease for decades: doctors pressuring them into unwanted sterilizations, framing them as potentially life-saving, without fully-informed consent about their potential irreversibility.


biotech

Gene therapies for deafness heighten fears of a shrinking community

Scientists are celebrating gene therapy advances that could permanently reverse deafness. But for some deaf people, they arouse existential dread: If deafness is cured, what happens to their communities and cultural identity? STAT's Timmy Broderick examines those and other questions about individual choice and unintended consequences in their latest piece. 

There aren't easy answers. "For the signing and deaf community to continue to exist, we need to have a critical mass of people," said Teresa Blankmeyer Burke, a deaf philosophy professor at Gallaudet University, a college for deaf and hard of hearing people, through an interpreter. "What happens if the number of deaf people dwindles to a low enough point? What is the impact of that technology, then?" Read more


policy

Methadone clinic industry blasts doctor prescribing

Methadone clinics are the only place patients can legally acquire the medication to treat opioid use disorder. A bipartisan, bicameral bill in Congress wants to open up that access, allowing any board-certified addiction doctor or psychiatrist to prescribe the medication directly to patients. But at a gathering of methadone clinic leaders and staff in Las Vegas this week, a longtime clinic industry leader argued that allowing doctors to prescribe the medication directly to patients isn't a good idea, STAT's Lev Facher reports from the ground.

From the conference, Lev brings us into the ongoing tug-of-war between methadone clinics and addiction doctors. Groups representing methadone clinics face mounting pressure to expand access to the medication — as patient advocates, politicians and major medical groups view them as restrictive and punitive. Read more about how clinics are reacting to the proposed legislation.



closer look

Achieving telehealth equity for people with hearing loss

Captions might be widely available on streaming sites and social media. But they're not common in telehealth visits — a gap that has a disproportionate impact on people with hearing loss, write hearing loss community members Zina Jawadi, Alexander Chern and Stephen McInturff in a STAT First Opinion. 

One friend, they write, spent more than an hour struggling to communicate over video chat with a doctor who was in a noisy area and wore a mask; there wasn't a captioning or chat function. "Access to effective communication, including captioning, is a legal right for people with hearing loss," they write — despite misconceptions that captioning could violate the federal privacy law HIPAA. More here.


cyber

When cybersecurity impacts patients' health

An urgent Lancet editorial warns health systems and clinicians of growing and seemingly inevitable cybersecurity risks. Health data hacks damage more than just patients' privacy; they can often lead to delayed care and financial distress. "Cybersecurity is not just an IT issue. It is a matter of health," the editorial notes. 

An attack on insurance payment processor Change Healthcare, for instance, disrupted billing for millions of patients across the country for weeks after the February intrusion; an inability to process payments has led some medical practices to the brink of closure. And the collision of new AI tools, telehealth services, and remote monitoring devices with outdated hospital IT makes health organizations easy targets. "[C]ybercriminals only need to find one weak entry point to paralyze the entire system," the piece notes


behavioral health

Disparities in mental health care access

White adults who self-report fair or poor mental health were more likely than Black and Hispanic counterparts to receive mental health care over the past three years, according to a KFF survey of more than 6,000 adults

About half of Black and Asian adults who got or tried to get mental health care said they struggled to find a provider who understood their background and experiences — compared to just about 38 percent of white adults who received or searched for mental health care. U.S.-born adults with fair or poor mental health were also far more likely than immigrants to receive mental health care, at a rate of 48 percent compared to 26 percent of immigrants. 


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What we're reading

  • Weeks later, Ascension cyberattack fallout persists, NYT

  • New evidence supports fear that drinking raw milk containing bird flu viruses may be dangerous, STAT
  • FDA urged to relax tissue donation restrictions for gay and bisexual men, KFF Health News
  • Nursing homes sue over Biden administration's minimum staffing rule, STAT

Thanks for reading! More tomorrow,


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