top of page
Search

Policy & Progress: What’s at Stake for the Nevus Community — And How You Can Take Action

Nevus Outreach is committed to advancing research, advocacy, and care for those living with Congenital Melanocytic Nevi (CMN) and Neurocutaneous Melanocytosis (NCM). But today, we face serious challenges that could threaten the future of CMN research and patient care — and we need your voice now more than ever.


This is not about politics. It’s about protecting progress, standing up for our community, and ensuring our families are not left behind.


April is National Interprofessional Healthcare Month–it aims to promote collaboration and communication among healthcare professionals from various disciplines, such as medicine, nursing, pharmacy, and social work. 


The month highlights the importance of interprofessional healthcare teams in providing high-quality, patient-centered care. It encourages healthcare providers to work together effectively, share knowledge, and improve patient outcomes. 


We know patient advocacy is a critical part of your care team. Let’s take a look at the landscape together and work together to overcome these challenges.




🔬 What’s Happening — And Why It Matters

Federal proposals and budget negotiations are putting rare disease research funding, healthcare access, and educational services at risk. These changes could have devastating effects for nevus-owners and their families, including:


1. NIH & FDA Research Funding in Jeopardy

  • The National Institutes of Health (NIH) is the primary funder of biomedical research in the U.S.

  • Proposed caps on indirect research costs and a shrinking budget mean fewer scientists and fewer grants — especially for underfunded conditions like CMN.

  • Without stable NIH funding, lifesaving clinical trials and research into CMN/NCM could vanish.


2. Medicaid Cuts Would Harm Nearly Half of Our Kids

  • Congress is considering $880 billion in Medicaid cuts over the next 10 years.

  • Nearly 50% of U.S. children — and many with CMN/NCM — rely on Medicaid to access therapies, imaging, surgeries, and specialists.

  • Medicare cuts threaten everyone's access to care.

Medicaid cuts can reduce the availability of specialty care for privately insured pediatric patients. (1-3)
3. Education Supports Could Disappear

  • Early intervention programs, special education services, and 504/IEP accommodations are federally funded.

  • Cuts to the Department of Education would threaten access to equitable learning environments for kids with NCM-related delays.


4. Insurance Reform Is on the Table
5. Drug Pricing Rules May Disincentivize Rare Disease Innovation

  • Current rules under the Inflation Reduction Act may discourage companies from developing treatments for rare conditions if they share a molecule with a common disease drug.

  • Patient Advocacy Organizations like Nevus Outreach are pushing for technical fixes to protect rare innovation. The MassBio event we attended last month in Boston focused squarely on these issues and this by-invitation-only meeting was an incredible opportunity to bring the voices of CMN and NCM patients into the discussion.

In the United States, oncology drugs are facing significant economic challenges due to escalating launch prices and limited competition, leading to increased financial burdens on patients and healthcare systems. A study published in JAMA Health Forum found that median launch prices for cancer drugs in the U.S. have risen substantially over recent years, often without corresponding improvements in clinical benefits. (4)

🧬 The Research That’s at Risk: NIH-Funded CMN Investigators

The NIH has historically provided critical support to the small but mighty group of researchers advancing our understanding of CMN and related conditions. These investments have led to real progress, and losing them would set us back years.


A person in glasses and a light blue shirt against a speckled dark background, looking at the camera with a neutral expression.

Dr. Michael Sargen – NIH Clinical Center / National Cancer Institute

  • Clinical trials enrolling CMN patients

  • Offers pathology consults to families across the country

  • Funded entirely through NIH programs



Smiling man in a suit with a blue tie stands against a plain light background, conveying a professional and approachable demeanor.
Dr. David Fisher – Harvard Medical School / Mass General Hospital

  • Grant: 5R01AR072304

  • NIH-funded since 2020 with $1.7 million

  • Pioneering topical therapies that reduce CMN lesions — now in clinical trials



Smiling woman with long blonde hair against a gray background, wearing a dark top. Neutral expression, soft lighting.

Dr. Maija Kiuru – University of California, Davis

  • Grant: 5K23AR074530

  • NIH investment of $671,760

  • Studying how CMN cells transform into melanoma, and how to stop it



Man with glasses smiling, wearing a black suit, white patterned shirt, and red tie. Gray background, professional setting.

Dr. Dipanjan Basu – University of Pittsburgh

  • Grant: focused on preclinical models of NCM

  • NIH funding: $150,740 since 2023

  • One of the only basic scientists in the world studying NCM directly



🔹 And More…

CMN is linked to mutations in NRAS/BRAF, and so NIH-funded research on pediatric melanoma, RASopathies, and brain tumors directly informs CMN treatment. The Children’s Oncology Group (COG) — funded by NIH — coordinates nearly all U.S. pediatric cancer trials and is critical for families facing CMN-related malignancies.

“Losing even one researcher and physician would be a devastating blow to our community.” — Dr. Sarah Nelson-Taylor, Chair, Nevus Outreach Research Committee.


🛠️ What Nevus Outreach Is Doing


✅ Supporting researchers through strategic partnerships 

✅ Advocating for continued federal investment in CMN/NCM research

✅ Engaging in legislative coalitions focused on rare disease access and equity 

✅ Educating our families and amplifying their voices



📣 What You Can Do

📞 1. Contact Your Members of Congress

Let them know:

  • NIH and FDA funding must be protected and increased

  • Medicaid is a lifeline for medically complex children

  • Insurance reform and education access are non-negotiable

Find your representatives:


📝 2. Share Your Story

  • Was your child’s care made possible by Medicaid?

  • Are you in a clinical trial? Struggling with insurance delays?

  • Your story could help sway votes and change laws.

  • https://democracy.io/#!/

📧 Email your experience to: https://nevus.org/shareyourrare


🛠️ 3. Use These Tools

  • 🧭 Claim Your Care – Navigate insurance coverage

  • 🧰 Policy Toolkit for Providers – Share with your doctor or care team

  • 🧑‍🎓 RareEDU Course – Free intro to rare diseases for students




🧡 Final Word: Alone We Are Rare, Together We Are Strong

This moment calls for all of us — parents, clinicians, researchers, and advocates — to speak up.


💥 The stakes are too high for silence. 

💪 The power of our stories can shift public policy. 

📢 Let’s defend the future of CMN research and care — together.

🔁 SHARE this blog. 

📬 FORWARD this message. 

📞 CALL your representatives. 

🎤 RAISE your voice.


Sources

Bisgaier J, Rhodes KV. The New England Journal of Medicine. 2011;364(24):2324-33. doi:10.1056/NEJMsa1013285. Leading Journal


*2. Quality of Health Insurance Coverage and Access to Care for Children in Low-Income Families. Kreider AR, French B, Aysola J, et al. JAMA Pediatrics. 2016;170(1):43-51. doi:10.1001/jamapediatrics.2015.3028.


*3. Tiny Patients, Huge Impact: A Call to Action. Wells J, Shah A, Gillis H, et al.

Frontiers in Public Health. 2024;12:1423736. doi:10.3389/fpubh.2024.1423736.


*4 “Launch and Postlaunch Price Developments of New Drugs in the U.S. and Selected European Countries.” JAMA Health Forum, January 2025.

Comments

bottom of page