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How sickle cell became the first CRISPR’d disease
Nearly a decade ago, consultants delivered to Rodger Novak a kind of Sears catalog of human malady: 200 pages, listing dozens of different diseases, each annotated with — from a business standpoint — their best and worst attributes. It was supposed to help Novak, then the chief executive of CRISPR Therapeutics, navigate a pressing quandary. His company was founded to commercialize the new revolutionary gene-editing tool CRISPR-Cas9, which promised to cure numerous genetic diseases. But which should they target first?
The result today is one of the more welcome twists of the CRISPR story. Novak dismissed all the consultants’ recommendations and picked sickle cell disease. Now, these patients who have long faced discrimination in medical settings, stand poised to be the first to benefit from a groundbreaking technology. Any day, the FDA is expected to approve exa-cel, the treatment built by CRISPR Therapeutics and its partner Vertex Pharmaceuticals.
The story of how sickle cell became the first “CRISPR’d” disease is instructive in thinking about the future of both sickle cell and the gene-editing tool. In some ways, it was the perfect test case. Read the story by STAT’s Jason Mast.
Disabled doctors make much less money than non-disabled doctors
Disabled patients can often have trouble getting their needs accommodated by physicians, many of whom hold misconceptions about disability. But what about the experiences of physicians who are disabled themselves? They account for about 2% of the workforce, according to a new study from JAMA Health Forum that assessed the income of those who are disabled against those who aren’t. And the payment disparities are stark: disabled doctors make 20% less than non-disabled doctors annually. Per hour, they tend to make 13% less, even when accounting for differences like race, gender, and whether the doctor is a surgeon or not.
The researchers looked at survey data from 2005 to 2019 that included over 92,000 physicians, about 1900 of whom have disabilities. Employer discrimination may be a key factor in the income disparities, they wrote, making it critical to collect such data. They also believe the study should encourage more research on the nature of the pay disparities as it relates to the degree of a person’s disability, the longitudinal earning trajectories, and more.
Remember Big Tobacco? Meet Big Weed.
A century ago, Big Tobacco calmed people’s health fears with outrageous claims that smoking was actually good for you. Camel “promote[s] good digestion” and gives you “healthy nerves,” it touted. In a new First Opinion, physician and former NYC commissioner of health Thomas Farley draws parallels between Big Tobacco then, and Big Weed now.
Farley and others worry about weed’s risk of addiction, strong link to schizophrenia, intoxicated-driver car crashes, and harms not yet proven. A true public health approach to legal marijuana should be based on the tobacco model, he writes, and would first regulate the product to reduce its risk: putting safer limits on potency and prohibiting new THC delivery forms until they were evaluated for safety. That includes prohibiting, for example, gummies, lollipops, sodas, and other edibles that are attractive to toddlers.
Read more on the comparison, and how Farley believes we should approach it.
Native scientists lead $9 million research project on Covid-19 in indigenous communities
STAT’s Annalisa Merelli has this report: On Friday, the National Institute of Health announced $9 million in funding for the creation of a repository of Indigenous Tribal data for research on Covid-19. The hub, led by Stanford University with the Native BioData Consortium, an indigenous nonprofit biodata repository and research institution, will be led and monitored by Native scientists, with the goal of ensuring responsible data collection and sharing among scientists working with indigenous communities.
The project addresses the lack of stated rules in the access of indigenous health data, a longstanding issue for research focusing on a segment of the population that already tends to be neglected in public health. For instance, when it comes to Covid-19 data, researchers would have to negotiate data access with each individual tribe, which would add significant hurdles to data collection. Now, all tribal Covid-data is available in one place, available to all researchers.
It’s a welcome initiative, but one that won’t be so easy to implement, said Joe Yracheta, the Native BioData Consortium’s executive director. “This is a big task, and there’s lots of contention, not only between tribes and the United States, but between the 574 tribes that exist. They are not always on the same page. Tribes are independent nations, and they all have their own ways of thinking and negotiating with outsiders,” he said.
Black children are less likely to receive life-extending epilepsy surgery, study finds
Children with drug-resistant epilepsy who are Black or insured through Medicaid may be less likely than white and privately insured patients to receive surgical treatments that can end or minimize their seizures and extend their lives, according to new research being presented today at the American Epilepsy Society’s annual meeting in Orlando, Fla. The study of 18,000 children who were treated at 49 pediatric hospitals in the U.S. between 2004 and 2020 found that those who had cranial surgery, which involves removing or disconnecting the brain portion where seizures occur, were 83% more likely to be alive 10 years later.
But the surgeries were not received equally. While 57.8% of the children in the study were white and 14.6% were Black, 63.6% of those receiving cranial surgery were white and 10.1% were Black. “When you look at who is getting these treatments, it’s very different,” Sandi Lam, lead author of the study and division chief of pediatric neurosurgery at Lurie Children’s Hospital, told STAT’s Usha Lee McFarling. “It really isn’t fair.” Read more.
Study: Chronic health disparities among queer and straight cancer survivors
Young adult lesbian, gay, and bisexual cancer survivors are more likely to have chronic health conditions than their straight peers and other queer people who haven’t had cancer, according to a new study in CANCER. Researchers analyzed survey data from 170 LGB cancer survivors who were diagnosed between age 15-39, matching them to 1,700 LGB people without a history of cancer and 1,700 straight cancer survivors from 2013-2020.
Over 70% of lesbian, gay, and bi cancer survivors reported at least one chronic health condition, compared to 59% of straight cancer survivors — 21% and 15% respectively reported having more than two. As experts often tell me, the disparity isn’t inherent to their queerness: study authors found that lesbian, gay, and bi survivors were less likely to be married or living with a partner than their straight counterparts. It may not sound important, but the authors noted that not only does marriage allow the sharing of insurance benefits, but it’s associated with earlier detection, improved cancer-specific survival, and with higher use of follow-up cancer care.
What we’re reading
• Giving birth in Gaza, The Atlantic
• STAT readers on burnt-out infectious disease doctors, 12-month prescriptions, and counting disabled Americans, STAT
• At core of Purdue Pharma case: Who can get immunity in settlements? New York Times
• Pfizer to halt development of its twice-daily oral obesity drug, following disappointing trial, STAT
• ‘Forever chemicals’ found in freshwater fish, yet most states don’t warn residents, NPR
