PC Project joined with other skin disease organizations – all members of the Coalition of Skin Diseases (CSD) to advocate for patients. Learn more about the CSD and Advocacy Program. There were three main asks:
- Advance Medical Research (National Instituted of Health (NIH) Funding)
- More research activities are needed to continue emerging opportunities to advance our scientific understanding of skin diseases. Without meaningful financial support the development of treatment options will be delayed, and we may loose the next generation of talented young investigators to foreign competition and other fields. To fully capitalize on innovative research projects investigating skin diseases and related conditions, the ask was to increase NIH funding with at least $50.924 billion in FY 2024. That is a 3.465 billion increase from provided funds in FY 2023.
- Support Increased Prevention and Awareness (Center for Disease Control and Prevention (CDC) Chronic Disease Education and Program (CDEP))
- The CDC’s National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) supports several programs that work to increase public awareness and improve professional education. Additional funding will enable CDC to support more proposals in subsequence years. In the interest of growing the program, supporting timely public health efforts, and ensuring the viability and effectiveness of emerging opportunities, the ask was to provide this new program with $6 million for FY 2024.
- Support Patient Access Legislation
- Step Therapy practices require patients to try and fail one or more treatments before the insurer covers the treatments originally prescribed. Too often, this leads to delays in proper treatment, worsened health outcomes, and contributes to higher healthcare costs. The Safe Step Act legislation (S.652/H.R.2630) would require insurers to implement a clear and transparent process for a patient or healthcare provider to request an exemption to a step therapy protocol and requires group health plans to grant exemptions if certain protocol is met.
- The HELP Copays Act (H.R. 830) 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. Your bill 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.
- S.127 – Pharmacy Benefit Manager Transparency Act of 2023 bans deceptive unfair pricing schemes; prohibits arbitrary claw backs of payments made to pharmacies; and requires PBMs to report to the FTC how much money they make through spread pricing and pharmacy fees.
PC Project met with the legislative staffers for both Oregon and Utah states.
Met with Francisco Flores-Pourrat, Legislative Assistant to Rep. Lori Chavez-DeRemer (R-OR-05)
Met with Chris Medrano, Legislative Assistant to Sen. Mike Lee (R-UT)
Met with Kannon Butler, Legislative Correspondent for Rep. John Curtis (R-UT-03)
Met with Max Seifert, Legislative Correspondent to Sen. Jeff Merkley (D-OR)
A Congressional Briefing/Luncheon was held on Capitol Hill, April 25th from 12:30-1:30 pm. The purpose of the briefing was to highlight the various impacts and burdens of Skin Disease. The goal was to put dermatology on the radar of our federal legislators and their staff, and give them a reason to care about the issues skin disease patient populations face. Speakers included:
- Kelly Barta President, Coalition of Skin Diseases
- Lindsey A. Criswell, M.D., M.P.H., D.Sc. Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) *Virtually
- Michael Siegel, PhD Executive Director, Pediatric Dermatology Research Alliance (PeDRA)
- Lisa Butler, MBA Executive Vice President, National Eczema Association (NEA)
- Becky Strong Outreach Coordinator, International Pemphigus and Pemphigoid Foundation (IPPF)
- Janice Schwartz Patient Advocate and Executive Director, Pachyonychia Congenita Project (PC Project)
- Brindley Brooks Patient Advocate and Founder, HS Connect
There was also time to collaborate with other organizations and learn from each other.
In addition, Janice had a filmed interview to share PC Project’s Story.
Janice talked with Dr. Isaac Brownell from NIAMS about how to advance PC research.