Advocating for Scarring Alopecia as Part of
Hill Day for the Coalition of Skin Diseases

By Larraine Bernstein

This past April, I had the privilege of representing the Scarring Alopecia Foundation at the Coalition of Skin Diseases (CSD) Capitol Hill Day in Washington, D.C. Like many of you, I suffer from Frontal Fibrosing Alopecia and have lost my eyebrows, sideburns, and some of my hairline. My disease started in 2008 when my eyebrows fell out and it took six years to get a diagnosis and another four years to identify a dermatologist who specializes in hair loss and knew how to treat my disease. The emotional, physical, and financial toll this disease has caused many women and men is enormous and that is why it was my honor to advocate on behalf of the CSD and SAF with legislators and their staff from my home state.

I joined the Florida delegation for CSD Hill Day. There were more than forty advocates who met with various legislative offices. My team met with legislative assistants to Representatives Laurel Lee, Brian Mast, Carlos Gimenez and Senator Marco Rubio. They were attentive and asked great questions. Two of the four had personal experience with skin diseases. Four of us from Florida shared their disease and their story and we each made one ask, which included the following information that was prepared by CSD. We asked our legislators through their staff to:

    • Provide NIH with $50.924 billion for FY 2024. Also provide a proportional increase to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). We expressed thanks that Congress approved $47.459 billion in FY 2023 to NIH.We shared that we are concerned that without the increased dollars there will be a delay in the development of treatment options, and we do not want to lose prospective talented young researchers to foreign competition or other fields.
    • Provide $6 million for the Chronic Diseases Education and Awareness Program at CDC. This was an increase of $1.5 million from FY 2023. The program seeks to provide collaborative opportunities for chronic disease communities that lack dedicated funding from ongoing CDC activities.
    • Co-sponsor and work to advance the Safe Step Act (S.652/H.R.2630) which implements an easy and transparent process for a patient or healthcare provider to request an exception to a step protocol and requires group health plans to grant exceptions if certain protocol is met.
    • Co-sponsor and work to advance the HELP Copays Act (H.R.830). This bill requires health insurance plans to apply certain payments made by or on behalf of a plan enrollee toward a plan’s cost-sharing requirements. Specifically, plans must apply third-party payments, financial assistance, discounts, product vouchers and other reductions in out-of-pocket expenses toward the requirements. This legislation closes a loophole that allows many employer health plans to deem certain covered drugs as “nonessential,” which means that the insurer will not count any cost-sharing toward the patient’s deductible and out-of-pocket maximum. H.R.830 will require all private plans to count all cost sharing for covered services to accrue to a patient’s deductible and out-of-pocket maximum.
    • Cosponsor S.127 – Pharmacy Benefit Manager (PBM) Transparency Act of 2023 which would ban deceptive unfair pricing schemes, prohibit arbitrary claw backs of payments made to pharmacies, and require PBMs to report to the FTC how much money they make through spread pricing and pharmacy fees.

The first two asks directly relate to the needs of SAF patients and providers. Funding for research is greatly needed to identify scarring alopecia causes and treatments. Financial support for education and awareness programming will help us reach out to those who have a diagnosis and those who are still seeking answers. The other asks will become important as new treatments for scarring alopecia become available.

I left Washington, D.C. feeling upbeat and positive about the possibilities for research and education for all skin diseases, and especially the Scarring Alopecia community. CSD Hill Day provided me with a wonderful learning opportunity about how to advocate at the National level, and I hope to be able to continue these efforts in the future.