Amplifying Our Voices: Why Collective Advocacy is Crucial for Rare Skin Diseases
- Kimberly Phelps
- 5 days ago
- 3 min read
Ever wonder if your voice really matters in today’s political landscape? The truth is, your voice does make a difference, and when it joins with many others, it becomes a powerful force for change. This May, I had the incredible opportunity to join Danielle Bestoso and Alyssa Huser in representing Nevus Outreach at the Coalition of Skin Diseases’ (CSD) Hill Day in Washington, D.C.—an inspiring event where patients, caregivers, and advocates united to speak directly with lawmakers and shine a light on the critical issues facing those with skin conditions.
All three of us carry Nevus Outreach’s mission close to heart: raising awareness for Congenital Melanocytic Nevi (CMN) and related nevus conditions. As mothers who have each walked the rare disease journey with our own nevus babies, our commitment runs deep. We’ve held our children through MRIs, surgeries, and moments of fear—and through it all, we’ve found strength in community and purpose in advocacy. Participating in this event gave us the opportunity to channel our personal experiences into policy change, speaking directly with members of Congress and their staff about the unique challenges faced by individuals and families affected by these rare conditions.
What We Advocated For
Throughout the day, we met with congressional offices to advocate for policies that would improve the lives of those with skin diseases.
Our top priorities included:
Co-sponsorship of the Safe Step Act – This bill establishes a transparent process for patients and physicians to request exceptions to “step therapy” protocols, ensuring timely access to the most appropriate treatments.
Robust funding for key health institutions – We urged lawmakers to provide strong fiscal support for the NIH, NIAMS, and the CDC, including the CDC’s Chronic Diseases Education and Awareness Program in Fiscal Year 2026.
Support for the HELP Copays Act (S. 864) – This legislation ensures that financial assistance from nonprofits and pharmaceutical companies counts toward a patient’s out-of-pocket maximum, helping to reduce the financial burden on those requiring costly medications.
Pharmacy Benefit Manager (PBM) reform – We highlighted the urgent need for legislation that increases transparency and accountability among PBMs to ensure patients have access to the medications they need at fair prices.
Why This Matters
Sharing my personal story—and the stories of families I’ve connected with through Nevus Outreach—was an incredibly powerful experience. I spoke about the long diagnostic journeys, the emotional toll of living with a rare condition, and the critical need for more research, awareness, and support.
Legislators and their staff responded with empathy. Several expressed sincere interest in learning more about rare skin diseases and the organizations, like Nevus Outreach, that are fighting to drive awareness, fostering a supportive community, and advancing research.
The Power of Collective Advocacy
What stood out most to me was the strength of unity. By joining forces with other organizations under the CSD umbrella, we amplified our voices and demonstrated that whether a condition is common or rare, every skin disease deserves recognition, research, and respectful care.
This experience reinforced how vital it is to continue telling our stories and pushing for change—not just during events like March on the Hill, but every day.
Take Action
Advocacy is ongoing. I encourage you to:
Contact your members of Congress and ask them to support the Safe Step Act, the HELP Copays Act, and PBM reform legislation.
Stay informed on healthcare legislation affecting the dermatology community.
Support Nevus Outreach’s efforts by visiting https://www.nevus.org.
Together, we can bring attention to CMN and related nevus conditions and ensure that no one faces these challenges alone.
Interested in opportunities to advocate?
Keep an eye out on Nevus.org/openings for upcoming advocacy volunteer opportunities!
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