Breaking News

Gene therapy for Afghan refugee family's infant will be fully covered

February 6, 2024
Reporter, Morning Rounds Writer
Good morning. We have good news for a child awaiting a gene therapy, words of wisdom from a student of "rebel patients," and two studies on sleep and housing as social determinants of health.

exclusive

Texas Medicaid will fully cover gene therapy for Afghan refugees' infant
genetherapytexas_illo3-768x432

Illustration: STAT; photo courtesy

It took months to hear the words he had been waiting for, and he still couldn't believe them. "I kept asking her again and again, are you sure it's the full approval, the full approval?" N. Pashai told STAT's Megan Molteni. The long-awaited call told him that Texas Medicaid will cover doctors' attempt to cure the Pashai family's 4-and-a-half month-old son Sufyan, who has an ultra-rare disorder that attacks the central nervous system, with an experimental gene therapy. 

As Megan reported last month, Orchard Therapeutics offered its multimillion-dollar treatment for metachromatic leukodystrophy, Libmeldy, to the Pashais free of charge. But the costs of the associated procedures — bloodwork, cell harvesting, chemotherapy, and hospital stays while Sufyan recovers — could add up to $300,000. The Pashai family immigrated to Texas in 2021 from Afghanistan, where Sufyan's father worked security for an elite unit of American-trained Afghan special forces. Read more.


politics

Is Covid misinformation free speech? The Supreme Court will weigh in

For some time now, social media sites have been awash with misleading posts about vaccine safety, mask effectiveness, Covid-19's origins, and federal shutdowns. At first, Biden administration officials urged tech platforms to pull down such posts, delete accounts, and amplify correct information. Now the Supreme Court could decide whether the government violated Americans' First Amendment rights with those actions — and dictate a new era for what role, if any, officials can play in combating misinformation on social media.

The Supreme Court will hear arguments next month in a Murthy v. Missouri, a case that alleges that federal officials coerced social media and search giants like Facebook, Twitter, YouTube, and Google to remove or downgrade  these posts. Biden lawyers argue that officials made requests but never forced companies to take action. This all comes on the heels of last week's public battering by senators demanding more content moderation from tech titans to protect children's safety on their platforms. STAT's Sarah Owermohle sorts out a confusing picture.


insurance

In a first, J&J faces lawsuit over how it handled its employees' drug benefits

Here's an interesting question: Are employers liable if they overpay for drugs? That's the idea behind a consequential new class action lawsuit filed against Johnson & Johnson. The pharma giant is being sued not in its role as a manufacturer of drugs, but as an employer and purchaser of prescription drugs for its workers. Ann Lewandowski, a health care policy and advocacy director at J&J, sued her company yesterday for allegedly overpaying its pharmacy benefit manager for its employees' medicines. 

Citing previous STAT reporting, some of the allegations in the lawsuit say those overpayments ultimately come out of workers' paychecks in the form of high health insurance premiums, higher out-of-pocket drug costs, and stunted wage growth. "This is very significant. It's massive," independent benefits consultant Chris Deacon told STAT. J&J did not immediately respond to STAT's request for comment. Bob Herman and Ed Silverman have more.



closer look

A 'patient-led revolution' is key to improving care
SusannahFox

Photo illustration: Casey Shenery for STAT 

The throughline of Susannah Fox's career has always been studying how patients leverage technology and online communities to get answers about their health. The author of "Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care" told STAT's Isabella Cueto that the work patients do isn't just about technology; it's about humanity, whether they're mobilizing around accessing their own data from continuous glucose monitors or bringing about at-home sickle cell tests. Isa asked her more:

When did you realize for yourself that "rebel patients" were shaping health in unseen or unacknowledged ways?

It was not until talking with people who were undiagnosed or living with something so rare that unless they went online, they were not likely to ever meet another person who had this condition, much less find any kind of a path toward treatment. That's when I saw the importance of connecting online for support and information exchange, but also to solve problems. 

Where do you fall on the spectrum from optimism to pessimism?

I do believe that technology, in general, brings good things to individuals and to health care.

Read the full interview.


health equity

After officer-involved killings of unarmed Black people, sleep suffers for Black people nearby

A new study in JAMA Internal Medicine looks at how officer-involved killings of unarmed Black people can impact a key component of health for broader Black communities. Researchers analyzed two large nationally representative surveys of nearly 2 million Americans who'd answered questions about how much sleep they got in a 24-hour span. When compared to a database mapping officer-involved killings of unarmed Black people, more Black people (46%) who lived nearby or in the same state as the killing reported short sleep compared to white respondents in proximity to the killing (33%). 

"While we have focused, over the last decade, on the social impact of the high-profile police killings of George Floyd and multiple other unarmed Black individuals in the U.S.," an editor's note says, "the health effects of both fatal and nonfatal police violence on Black populations need to be documented as a critical first step to reduce these harms."


social determinants of health

Help with housing improves health, too

It stands to reason that if someone's housing is unstable, their health might also be teetering. A new study in Health Affairs looked at a hospital system's program that enlisted primary care providers to help prevent homelessness and improve health for more than 1,100 patients on Medicaid with more chronic conditions and higher emergency room use than the general population. By 2021, among participants who were unhoused, facing eviction, or living in unsafe housing conditions, people who received integrated support from the program's care team had 2.5 fewer primary care visits and 3.6 fewer outpatient visits per year, including for social work, behavioral health, psychiatry, and urgent care. 

Patients also enjoyed better physical and mental health; many said they felt more connected to their health care clinic and clinical team. But there was no difference in emergency department or inpatient use or chronic disease control.


More around STAT
Check out more exclusive coverage with a STAT+ subscription
Read premium in-depth biotech, pharma, policy, and life science coverage and analysis with all of our STAT+ articles.

What we're reading

  • GoFundMe is a health-care utility now, The Atlantic
  • She wanted to make a chicken sandwich with fewer chemicals for schoolkids. How hard could it be? The Guardian
  • The lone Democrat willing to weaken Medicare's power to negotiate drug prices, STAT
  • Matt's Take: Novo's Catalent deal is great for GLP-1s. But what about drug manufacturing? STAT

Thanks for reading! More tomorrow,


Enjoying Morning Rounds? Tell us about your experience
Continue reading the latest health & science news with the STAT app
Download on the App Store or get it on Google Play
STAT
STAT, 1 Exchange Place, Boston, MA
©2024, All Rights Reserved.

No comments