Representative Ayanna Pressley knows what it’s like “to experience a transformation not of your own choosing,” as she puts it. The Massachusetts congresswoman, part of the quartet of progressives known as “the Squad,” revealed last year that she was among the nearly 7 million Americans living with alopecia—an autoimmune disease where the immune system attacks healthy hair follicles, causing hair loss. “When you feel like your body is betraying you and you feel less like yourself—that’s already challenging,” Pressley told me in an interview. But “to be bald as a woman really does disrupt conventional and societal norms of what is appropriate, what is professional, what is attractive, what is feminine,” she said. “It’s so much more than cosmetic…. It takes a real toll.”
Pressley brings that lived experience to the bill she and Rep. James McGovern, her colleague in the Massachusetts House delegation, plan to unveil Thursday. On the last day of Alopecia Awareness Month, the pair are reintroducing a bill requiring Medicare to pay for wigs for those experiencing hair loss due to medical treatments or disease. Given the few effective treatment options for alopecia—which has no known cause or cure—many with the condition look to cranial prosthetics (a.k.a. medical wigs) to address their hair loss. “But these prosthetics can be out of reach for people with low or fixed incomes like our seniors,” Pressley notes, with some costing as much as several thousand dollars.
McGovern, the ranking member of the House Rules Committee, introduced the bill in 2018, before Pressley, Massachusetts’s first African American woman to be elected to Congress, took office. In an interview, McGovern recalled how a constituent who runs a shop to help women undergoing physical changes caused by their treatment brought his attention to the cost-prohibitive issue. “Doctors have told me that patients have refused lifesaving cancer treatments because they were afraid they were going to lose their hair and didn’t know how to deal with it,” he said. The congressman knows this anxiety firsthand: His 20-year-old daughter, who has a rare cancer diagnosis, is living it. “The thing she’s most worried about is having to go through chemotherapy,” he said. “Losing your hair at 20—that’s really kind of a traumatic thing.”
Though many private insurance plans may cover the cost of wigs, Medicare does not. The bill reintroduced Thursday would change that by recategorizing cranial prosthetics as durable medical equipment covered under the Social Security Act. “This is about basic human dignity and respect,” McGovern said. “It’s a simple legislative fix, and I think it’ll have a profound impact,” Pressley added. While the bill stalled in the past, Pressley’s public alopecia journey could help it move forward now.
“If there’s not someone up here with a lived experience explaining why something is important, it gets put on the back burner,” McGovern said. “Often people have just not understood a bill and when they hear that testimony or that story, it shifts,” Pressley added, recalling early debates around breast-reconstruction surgery in which people who “did not understand the trauma” of a mastectomy saw it as purely cosmetic. The procedure wasn’t covered by insurance, she noted, until “enough people amplified their stories.” McGovern’s perch in Congress may also help see it through. “I’m the chairman of the Rules Committee. Every bill that comes through the floor has to come through me. So if I can’t find something to attach it to, then shame on me.”
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