First Opinion Podcast

Duchenne muscular dystrophy is a devastating disease and, until very recently, was one without much hope. When Hawken Miller was diagnosed at age 5, the physician told his parents to enjoy the time they had with him, as there wouldn't be much. Over 20 years later, Miller is a journalist and content strategist for CureDuchenne, an organization started by his mother when he was diagnosed, and new treatment is on the horizon. Last month, the FDA approved a new gene therapy from Sarepta Therapeutics that will provide hope for many patients and families. The new drug, however, has its limitations — it's only approved for children age 4-5, for example. Miller joined the podcast to discuss how this drug may change lives, what more needs to happen, and what his personal experience has been living with Duchenne.

Physician and professor Jason Karlawish argues that new promising drugs like lecanemab, an anti-amyloid antibody expected to be approved by the FDA July 6, will introduce complicated issues into the field of Alzheimer's care. These medications require a great deal of testing and patient monitoring, trained physicians, and other resources in a system that is already stretched thin.

Drug shortages are a growing problem in the U.S., and a shortage of live-saving cancer drugs has reached crisis levels. Oncologist Kristen Rice explains that drug shortages have been happening for several years but have been getting progressively worse in the last few months. Oncologists are facing critical shortages of common, generic cancer medications and have even begun to ration care for certain patients who are able to delay treatment, according to Rice.

Under the Affordable Care Act, health insurers are required to cover all costs associated with preventive care — including PrEP, or pre-exposure prophylactic treatment for HIV. But now all preventive care coverage is under threat, thanks to a lawsuit filed by employers who believe they shouldn’t be required to pay for care that violates their religious beliefs. While coverage for PrEP access largely unchanged as the court case makes its way through the legal system, Richard Hughes IV, a partner with the law firm Epstein Becker Green, says that protecting the status quo isn’t enough.

Just days after the end of Roe v. Wade, Caitlin Bernard, an OB/GYN in Indiana, told the Indianapolis Star a heartbreaking story: She had recently been asked to perform an abortion on a 10-year-old Ohio girl who had been raped. In late May, the Indiana Medical Licensing Board held a hearing on Bernard. While they did not revoke her license, they fined Bernard $3,000 and issued a letter of reprimand, saying that by speaking out, she had violated the 10-year-old girl’s privacy. This week, Gabriel Bosslet and Tracey Wilkinson, who are both friends and colleagues of Bernard, talk about her story, its lessons for physicians, and why advocacy is a professional responsibility.

When a loved one is living with serious substance use disorder and refuses to get help, sometimes it seems like the only solution is to force them into it. In many states, people can be “arrescued” — that is, forced under penalty of law into a treatment program that is nearly identical to being incarcerated, down to orange jumpsuits. But Sarah Wakeman, an addiction medicine physician, says that while she understands the love that makes people see involuntary treatment as a solution, it doesn’t actually work.

The high cost of cancer treatment in the U.S. is literally killing people. “Over a quarter of cancer patients delay medical care, go without care, or make changes in their cancer treatment because of cost,” Ezekiel J. Emanuel, an oncologist and co-director of the Health Care Transformation Institute at the University of Pennsylvania, wrote in a recent First Opinion essay.

But Emanuel says there’s a solution: Cancer patients shouldn’t have to pay any out-of-pocket costs for their treatment, especially in the first (and typically most expensive) year after diagnosis.

We've all had the experience of a clinician staring at screen while asking us sensitive questions to fill out our electronic health records. But that frustrating experience is made even worse by a new trend in health care. As Sanjay Basu wrote in a recent First Opinion, hospitals are using so-called "screen and refer" systems to identify people with social needs, like those who are experiencing domestic violence or hunger. The idea is that workers ask patients about their needs, then refer them to organizations such as food banks that can help. But according to Basu, a primary care provider, these well-intended efforts are instead dehumanizing and ineffective for patients, and burdensome for the organizations buried by referrals.

As an oncologist, Jennifer Lycette gets to know her patients particularly well. She’s doubtful that artificial intelligence could replace that personal connection, but new research based on, of all things, Reddit Q&As, says otherwise. New study findings raised questions about the potential for using chatbots, like ChatGPT, to help physicians answer questions submitted from patients through electronic medical records — a task that can take hours of stolen, rushed time between appointments at the clinic.

Alex Rosenblat is particularly careful when it comes to her digital privacy. She requests to fill out paper forms instead of digital ones; she documents and tracks what she signs. But even her diligence can't always save her. Rosenblat recently spent months retracing her digital steps after Phreesia, a company that collects demographic information, claimed to have her authorization to share her data — authorization she knew she hadn't consented to. This week, Rosenblat talks to host and editor Torie Bosch about tracking down her own information and the amorphous harm caused by invasions of privacy.