Gaslit patient-researchers band together to crack Ehlers-Danlos syndromes

(Maria Fabrizio for STAT)

Patients with Ehlers-Danlos syndromes might look healthy and their tests might show no signs of disease, but they endure repeated joint dislocations, headaches, and pain, as well as gastrointestinal issues, fatigue, and stretchy and fragile skin. All of these symptoms are present in some forms of EDS and all of the patients STAT’s Isabella Cueto spoke to experienced medical gaslighting in one form or another. After all, EDS patients have adopted a zebra as their mascot — doctors are trained to associate hoofbeats with horses, but sometimes, it’s a zebra.

Cortney Gensemer and other patients are doing more. Young patient-researchers who have the form called hEDS are studying the disease — its genetic sources, the way connective tissues break down, how modern diagnostic tools are failing patients — and redefining what the study of chronic disease can look like by smudging the line between patient and researcher. Read more about their progress.

A Covid-19 test maker becomes a health insurance company

Curative rose to prominence early in the pandemic for its Covid-19 tests — until the FDA and states said its tests led to too many false negatives. Now Curative has switched to health insurance. Curative co-founder and CEO Fred Turner spoke with STAT’s Bob Herman about what’s next.

Why the pivot?
We realized the more you scale as a national provider, you’re spending more time thinking about and dealing with payers, and less time solving patient problems.

So Curative’s plan has no deductible, no copays, and no out-of-pocket costs for in-network care if people come in once a year for a preventive health screening. What if they don’t?
If you don’t do your baseline, it’s a $5,000 deductible and 80/20 coinsurance. What we’re trying to do is remove the complex financial incentives and just put in place one big carrot and stick.

Read the full interview here.

Extreme cold is more deadly than heat for people with heart failure

Heat waves can grievously harm people with chronic illnesses, as STAT’s Isabella Cueto reported this past summer, but extreme cold is even worse for people with heart disease, a new analysis in Circulation tells us. In the study across five continents and of more than 32 million cardiovascular deaths from 1979 to 2019, there were more deaths on days when temperatures were at their highest or lowest. On the hottest days, there were 2.2 additional deaths for every 1,000 cardiovascular deaths but on the coldest days, there were 9.1 additional deaths.

People with heart failure fared the worst, compared to those with narrowed coronary arteries, strokes, or arrhythmias. “The intersections between extreme temperatures and cardiovascular health need to be thoroughly characterized in the present day — and especially under a changing climate,” the authors wrote.

Closer look: OSHA’s making Covid safety rules permanent. Not everyone’s on board

(DAVID RYDER/GETTY IMAGES)

OSHA's temporary Covid-19 rules — the ones governing masks and vaccination requirements in hospitals for health care workers — will sone become permanent, but not everyone is happy about it. After putting out proposed standards and then gathering hundreds of comments from hospitals, clinicians, unions, and others, the workplace safety agency sent a final version of the regulation to the White House budget office for review last week.

It’s a surprisingly contentious, STAT’s Tara Bannow reports. Hospitals and their lobbying group say they already comply with rules from the CDC and CMS. Assisted living executives, residents, and their families argued that such facilities should be exempt because they are more like homes. But unions that represent nurses, janitors, and other health care workers contend hospitals and other health care facilities don’t have great track records of keeping workers safe during the pandemic, making explicit rules necessary. Read more on what's next.

High school athletes are more likely to vape

High school students who play on sports teams are much less likely to smoke cigarettes than other students, but they are more likely to be vaping, a new study in Pediatrics says. Surveys of student-athletes over the five years before the pandemic found that vaping was more popular among students on competitive teams, even though their other choices — eating well and being physically active — are healthier than their peers’. The researchers, who studied over 30,000 teenagers, better than half of whom played sports, say there’s a halo effect around vaping, based on a 2014 survey in which nearly three-quarters of high schoolers said they believed e-cigarettes were less harmful than regular cigarettes.

Even though these athletes tended to smoke or vape less frequently than other students, the researchers say “aggressive efforts must be taken to educate student athletes … about the demonstrated (and suspected) health risks” of vaping.

And both smoking and vaping are linked to poor oral health

Here’s more research on tobacco: A study in JAMA Network Open highlights the harmful effects of tobacco on oral health, from old-fashioned cigarettes, cigars, and pipes to newer hookahs and e-cigarettes. It’s a gruesome list: gum bleeding, precancerous oral lesions, bone loss around teeth, bleeding after brushing or flossing, loose teeth, and teeth removed because of decay or gum disease. Among the more than 28,000 adults who responded to surveys, cigarette smoking was associated with a gum disease diagnosis, loose teeth, and one or more teeth removed. Cigar smoking but not cigarette smoking was linked to precancerous oral lesions.

Vaping was tied to bleeding after brushing or flossing, but because vapers were often former or current smokers, the researchers couldn’t say for sure what caused the bleeding. “In addition to informing FDA’s tobacco regulatory actions, the findings emphasize the continued importance of tobacco cessation counseling and resources in clinical practice,” they write.

What we're reading

Authorities are urging indoor masking in major cities as the 'tripledemic' rages, NPR
Behind New York City’s shift on mental health, a solitary quest, New York Times
Bone marrow transplant patients could be spared from ‘bland’ diet, study finds, STAT
Whoop draws criticism for claiming its fitness tracker may predict premature births, Boston Globe
Novartis develops CAR-T therapy that can be made in a fraction of the standard time, STAT