Pressley, McGovern, Colleagues Honor Alopecia Areata Awareness Month, Unveil Bill to Support Individuals Experiencing Hair Loss

September 30, 2021
Press Release
Bill Allows Medical Wigs to be Covered by Medicare

Bill Text | Bill Summary

WASHINGTON – Today, as Alopecia Awareness Month comes to a close, Congresswoman Ayanna Pressley (MA-07) and House Rules Committee Chairman James P. McGovern (MA-02) led their colleagues in re-introducing the Wigs as Durable Medical Equipment Act, legislation to help individuals affected by Alopecia Areata and patients with cancer who are undergoing chemotherapy.

Many private insurance plans cover wigs for those undergoing treatments that cause hair loss or who are affected by alopecia areata. This bill would allow cranial prosthetics (wigs) to be covered under the Medicare program.

“Since I first revealed my alopecia diagnosis, I’ve been intentional about creating space and creating community for those of us who have medical conditions that impact our hair - and this bill is a continuation of those efforts,” said Rep. Pressley. “Every person living with Alopecia, battling cancer, or facing another medical condition that leads to hair loss, should be able to access wigs and other head coverings. Our bill is responsive and sends a powerful message to these communities: we see you, you belong, and you deserve to be treated with dignity and respect. I am grateful to my friend Congressman McGovern for his partnership on this deeply personal and critical legislation.”

“For people impacted by Alopecia or undergoing cancer treatment, a wig can make all the difference in the world. It can provide them with the confidence and courage the need to get back to normal during a challenging time,” said Rep. McGovern. “But wigs can cost thousands of dollars, and despite the enormous and clear benefits they provide, they are not currently covered by programs like Medicare. Congresswoman Ayanna Pressley and I think that needs to change, and we are introducing this important new bill to ensure equitable access to wigs and extend dignity and respect to folks who are impacted by Alopecia or who are undergoing cancer treatment.”

With no known cause or cure, Alopecia Areata is an autoimmune skin disease affecting approximately 6.9 million Americans. The disease disproportionately affects children and Black Americans, particularly Black women. Many individuals affected by Alopecia Areata utilize wigs as there are currently few effective treatment options. Unfortunately, these prosthetics can come with a significant out-of-pocket cost from $100 to several thousand dollars for individuals with low or fixed incomes. This is especially burdensome for children, who often want cranial prosthetics for attending school.

“The National Alopecia Areata Foundation (NAAF) applauds the introduction of the Wigs as Durable Medical Equipment Act and the historic efforts of Representatives Ayanna Pressley and Jim McGovern to better the lives of the 6.9 million Americans affected by alopecia areata,” said Gary Sherwood, Communications Director, National Alopecia Areata Foundation. “Passage of this critical legislation will ease the onerous financial burden placed on alopecia areata patients who cannot afford cranial prosthetics without incurring tremendous cost, and will hopefully bring about more fair insurance coverage for those with this disease. NAAF’s Legislative Liaisons and Legislative Mentors - our patient advocates - will work tirelessly to obtain co-sponsors for this essential legislation, and expect every House member who cares about their constituents with this disease to support it.”

“Wigs are not a cosmetic choice—they are a medical necessity for those of us living with Alopecia who struggle daily with people staring at us and wondering why we don’t have hair. However, not everyone can afford to pay out-of-pocket for a good wig. Few insurance companies recognize wigs as a medical necessity for those folks struggling with Alopecia,” said Chrissa Kaselis, leader of the Boston Area Alopecia Areata Support Group. “This legislation would make wigs more affordable for the 6.8 million people diagnosed with Alopecia, and I am proud that Boston’s own Congresswoman Ayanna Pressley, a true Alopecian, is championing this bill and this cause. It is a true honor to have her fighting for us.”

Rep. Pressley and Rep. McGovern were joined by Rep. Mike Quigley (IL-05) in introducing the bill.

Rep. McGovern first introduced the bill in 2018 after a meeting with Mary Aframe, who runs the Women’s Image Centers located in Worcester and Leominster, Massachusetts. Aframe said she has heard from many women who are looking for a wig due to hair loss after cancer treatment – specifically breast cancer. Many were on Medicare and struggled to afford a wig, sometimes even choosing different treatment paths to avoid hair loss.

In 2019, Rep. Pressley revealed in a powerful video that she had been diagnosed with Alopecia Universalis, an auto-immune disease which attacks the hair follicles. Since then, she has championed policies in Congress that support and express solidarity with the nearly 7 million Americans living with alopecia.

In March 2021, Rep. Pressley, Senator Cory Booker (D-NJ) and Representatives Representative Bonnie Watson Coleman (NJ-12), Barbara Lee (CA-13), Ilhan Omar (MN-05) and Gwen Moore (WI-04)) reintroduced the Creating a Respectful and Open World for Natural Hair (CROWN) Act, a bill that would ban race-based discrimination based on hair textures and hairstyles. The legislation originally passed the House in September 2020 and was most recently marked up by the House Judiciary Committee this week.

Last year, she delivered remarks on the House floor in which she recognized September as Alopecia Areata Awareness Month, celebrated long time advocates, and discussed her own experience with Alopecia.

Last year, the House passed an amendment introduced by Congresswoman Pressley to provide $5 million dollars for the National Institutes of Health’s National Institute of Arthritis and Musculoskeletal and Skin Diseases to fund research on the causes, impacts, and possible treatments of Alopecia Areata. 

In an op-ed published in ELLE in September 2020, Rep. Pressley and Aisha Francis, Ph.D., Chief Executive Officer of the Benjamin Franklin Institute of Technology, opened up about their experiences with hair loss and the need to rethink antiquated notions about what hairstyles are considered “acceptable.” Pressley and Francis called for the enactment of the CROWN Act, which had passed the House earlier in the month.

 

 

 

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