Battle lines over Medicare Advantage, test strips for ‘tranq,’ & pivoting after gene therapy transforms a rare disease

To grasp the impact of gene therapies on children with SMA, look at the two tiny wheelchairs gathering dust inside Kelly Eakin's garage.

March 27, 2023 Check out STAT+

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By Elizabeth Cooney Reporter, Morning Rounds Writer

Good morning. Today Jason Mast takes a closer look at what happens when a gene therapy changes what children with a rare genetic disease need from a foundation created to help them.

insurance Health insurers fight — and overstate — Medicare Advantage changes Insurers are outraged, warning older Americans they'll lose prized perks and pay higher premiums for Medicare Advantage, the alternative to traditional Medicare run by private health insurers. But the government's proposed revisions, due April 3, are relatively tame, according to researchers and experts who have no ties to the health insurance industry. Instead, they say, the Biden administration could do more to combat the most egregious coding practices in these plans, which increase costs. The changes target Medicare Advantage's "risk adjustment" system, which pays in part based on "risk scores" saying how sick insurers' enrollees are. Risk adjustment has been a source of rampant overcoding and a major reason why Medicare Advantage hasn't produced any savings for the government. The federal government hopes more rigorous audits will help crack down on the most blatantly bad behaviors. STATs Bob Herman explains. addiction Coming soon: New test strips to detect 'tranq' If you know 'tranq' is short for a veterinary tranquilizer, xylazine, you may also recall it can cause people to stop breathing and lead to serious skin wounds. The sedative is present in roughly 90% of illicit opioid samples in Philadelphia and it's also showing up in illicit drug supplies elsewhere in the U.S., making the time ripe for test strips to detect it, experts say. Like similar tools to identify fentanyl, the test strips fit into the model of harm reduction, whose goal is to help users protect themselves from disease transmission, overdose, and death. "Their utility is really going to be among people who are using opioids who want to know if their opioids are adulterated," said Alex Krotulski, a forensic toxicologist at the Center for Forensic Science Research & Education, which published a recent study of the strips' effectiveness. STAT's Lev Facher has more. health Minnesota sees its future as a 'trans refuge state' As more U.S. states restrict gender-affirming care — despite evidence that it provides major health benefits —Minnesota is looking to establish itself as a "trans refuge state" — a legislative effort led by state Rep. Leigh Finke, the first openly trans person in Minnesota's state government. STAT's Theresa Gaffney recently spoke with Finke. What is Minnesota doing?  Many states make it not just illegal to receive gender-affirming care, but illegal to travel to receive that care. So we are saying while you're in the state of Minnesota receiving that care, Minnesota's jurisdictional system of custody and courts will protect you. How might that work? What's happening in Minnesota will stay in Minnesota, essentially. We will not return medical records to a state that intends to use those records to prosecute. And it also allows temporary emergency custody for court proceedings to unfold in the state of Minnesota.  Read the full interview here.

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Closer Look When a gene therapy transforms a disease, what's next? Courtesy Eakin family To grasp the impact of gene therapies on children with spinal muscular atrophy born at just the right time, look at the two tiny wheelchairs gathering dust inside Kelly Eakin's garage in suburban Maryland. Eakin, president of a foundation to help SMA families, stored the 7-pound wheelchairs there for children whose disease could shorten life and stunt growth so severely they couldn't use the child wheelchairs insurance covered. Now three powerful SMA therapies have been approved since 2016, allowing many children born with the rare neuron-wasting disease to not only live and grow but even walk. That raises what STAT's Jason Mast calls a blessedly existential question: What happens once your disease is no longer really the same disease? Families and researchers wonder what comes next, while Eakin's foundation focuses on patients who were caught in between — including her twins James and Bryce (from left, above) — born recently enough to benefit from new medicines but too late to receive them from birth. Read more. environmental health  Stronger air pollution standards may benefit Black and low-income Americans the most In January, the EPA announced it would consider lowering allowable levels of particulate matter in the air, based on extensive research linking it to premature death. A new New England Journal of Medicine study looks more deeply into the impact of exposure to this form of air pollution, finding unequal effects depending on race and income. The analysis of Medicare data from more than 73 million Americans between 2000 and 2016 found that all older Americans would benefit from stricter pollution standards, but some more than others. Black higher-income adults would see their mortality rate fall by 7%, Black and white low-income adults would see theirs drop by 6%, while white higher-income adults would see a decline of 4%. "Our results suggest that a lower [particulate matter standard] may reduce environmental inequities among a broad swath of Americans marginalized by structural racism and social exclusion and disproportionately affected by air pollution," the authors write. heart disease A genetic variant for heart disease turns up as an 'incidental' finding. What's next? Surprising genetic results, whether part of medical care for another issue or the fruit of consumer testing, are becoming more common as sequencing becomes more mainstream. These genetic variants, known as incidental findings, might be related to cardiovascular disease risk, but the American Heart Association advises caution before taking action. Some of their recommendations out today: Patients should be told about incidentally identified variants if they are among the genes already known to be associated with cardiovascular disease and if patients agreed during pretest genetic counseling to be informed about them. Incidentally identified variants in genes with an uncertain association with cardiovascular disease should not be reported. If a discovered variant may increase the risk of cardiovascular disease, getting a family history and medical evaluation are suggested to determine whether there is evidence of the disease or any warning signs. The genetic variant should be re-evaluated periodically.

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What we're reading Their child's obesity drug was working. Then their plan refused to pay, Washington Post Opinion: I helped make the Covid vaccine. Here's what I learned, New York Times Under protest, FDA to convene advisory panel to review controversial cell therapy for ALS, STAT How Cigna saves millions by having its doctors reject claims without reading them, ProPublica Opinion: Strengthen science by funding living evidence synthesis, STAT

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Thanks for reading! More tomorrow,

elizabeth.cooney@statnews.com

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