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From the desk of Douglas Brodman, Board Chair:
Too often, the concept of advocacy can feel removed from our everyday lives. Decisions are made in state capitals or in Washington, DC, far away from where many of us live. But each year, we bring our community together to prove that the opposite is true: advocacy is for everyone and for every day.
This year, we had possibly our most critical Advocacy Days yet that was immediately followed by state advocacy efforts to protect access to innovative melanoma treatments, mobilization to protect melanoma research funding, and glimmers of hope as federal lawmakers work together to address policy barriers to melanoma prevention. This political environment is challenging, and we are all working tirelessly to ensure that melanoma patients are not caught in the middle.
We need your help. Sign up to receive our advocacy alerts. Share the registration with your friends and loved ones. Advocating for the melanoma community is bigger than any one person and together, we can drive real progress.
Sincerely,
Douglas Brodman
Chair, Board of Directors |
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| | The MRF welcomed 50 passionate advocates – including 7 from the medical research community – to Washington, DC, for an impactful day dedicated to advancing key federal melanoma policy priorities and heard from policy experts representing Kenvue, Axios, Johns Hopkins University, the Congressionally Directed Medical Research Programs (CDMRP) and Akin Gump lobbying firm.
Our advocates met with 51 congressional offices across 17 states to champion:
• Increased funding for the Department of Defense’s Melanoma Research Program (MRP) within the CDMRP
• Robust funding for the National Institutes of Health (NIH), National Cancer Institute (NCI) and Centers for Disease Control and Prevention (CDC) to support melanoma research and prevention efforts.
• Congressional action to reauthorize the Over-The-Counter Monograph User Fee Program (OMUFA) helping to bring more sunscreen filters to market and improve access to sun protection for people of a variety of skin types and tones.
Our Advocacy Days were made even more special with the participation of seven members of the medical research community and welcome remarks provided by Maryland Congressman Steny Hoyer. We were honored to have MRF Breakthrough Consortium (MRFBC) Co-Chairs Dr. Rich Carvajal and Dr. Tara Mitchell join us along with three recently MRF funded research grantees. Their expertise in the field further amplified our voices and the urgency of these critical issues.
Thank you to our advocates for sharing your stories to pave the way for progress in melanoma research, prevention and treatment. Together, we are working toward a future where a cure is possible. The Congressionally Directed Medical Research Programs (CDMRP) |
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| As the March 14 deadline for the continuing resolution (CR) that had funded the government since December approached, Congressional Republicans put forth a new CR to fund the government for Fiscal Year 2025 (FY25) that unfortunately included a 57% cut to the Congressionally Directed Medical Research Programs (CDMRP) within the Department of Defense. The MRF mobilized 206 advocates who contacted 248 federal lawmakers urging them to vote no on the CR or support an amendment that would protect CDMRP funding. The House and Senate both passed the CR without an amendment for CDMRP, and we also learned that Congress would proportionally cut individual programs, reducing the Melanoma Research Program’s (MRP) funding from $40 million to $17 million.
However after the CR passed, Congressman Ken Calvert (CA-41) and Senator Mitch McConnell (KY) (both chairs of their respective Defense Appropriations Subcommittees) sent a letter to Secretary of Defense Pete Hegseth expressing congressional intent for the Defense Health Agency (DHA) to appropriate $40 million for the MRP in FY25, keeping the program funded in line with our Advocacy Days asks for FY25.
The MRP has been a critical source of melanoma research, including rare melanomas that have received $2 million in dedicated funding since FY22. We are encouraged by Congress’s intent to protect this funding going forward and encourage Secretary Hegseth to prioritize CDMRP this fiscal year. House Energy & Commerce Health Subcommittee Hearing on OMUFA |
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| On April 1, the MRF’s Director of Advocacy, Kim Wezik, testified before the House Energy and Commerce Subcommittee on Health on the Over-the-Counter Monograph User Fee Act (OMUFA) reauthorization and streamlining the Food and Drug Administration’s (FDA) sunscreen filter approval process. In her remarks, she stressed that the FDA’s reliance on animal testing and the maximum usage trial (MUsT) test has led to a stalemate as no new sunscreen filters have been approved in the United States since the 1990s. Skin cancer, including melanoma, is a largely preventable disease and sunscreen is an important cancer prevention tool in that fight. |
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| | State-Level Sunscreen in Schools Bill Passes in NJ General Assembly |
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| In New Jersey, Gov. Murphy signed Senate Bill 1548 into law on April 1, requiring school districts to adopt policies that allow for student use of sunscreen and sun-protective clothing at school and school-sponsored functions. NJ became the 30th jurisdiction to implement legislation modeled by the SUNucate Coalition. This past December, the MRF’s Advocacy Coordinator, Saralan Campbell, testified before the State Senate Committee on Education in support of this bill to highlight the public health implications of access barriers to sunscreen and the importance of daily sunscreen accessibility. |
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| NJ Governor Phil Murphy Introduces Tax Exemption for Sunscreen Products |
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| In his budget speech this past February, Gov. Murphy proposed to eliminate sales tax for all sunscreen products purchased in the state. Murphy’s proposed sales tax cut helps to expand access of proven melanoma prevention tools, such as sunscreen, to New Jerseyans. The state legislature will be reviewing this budget proposal from February to May, with a final appropriations bill enacted by the end of June. Anti-mRNA Vaccine State Legislation |
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| Over the past few months, there has been an alarming rise in state-level efforts to ban mRNA vaccines and the mRNA technology increasingly used in a variety of cancer therapeutics. These efforts threaten to eliminate patient access to one of the most promising treatments in phase 3 trial development – a mRNA melanoma vaccine. If brought to market, the mRNA melanoma vaccine could have life-changing results for those diagnosed with advanced disease by lowering the risk of recurrence and further metastasis.
In Texas, there are 8 bills circulating that target the mRNA vaccine. In response to this concerning state legislation, Texas-based patient advocate and pediatric melanoma thriver, Marit Peterson met with state lawmakers earlier this month to underscore the importance of protecting the mRNA melanoma vaccine.
“When I walked into the Texas Capitol yesterday, I wasn’t just another advocate, I was a melanoma survivor and thriver. I shared my story, not because mRNA saved my life, but because it could save the lives of melanoma patients like me in the future. The rise in anti-mRNA rhetoric is alarming, and honestly scary for our whole community. We can’t let misinformation block access to science that holds so much potential for people fighting cancer.”
– Marit
Unfortunately, several other states have also introduced legislation against mRNA vaccines, such as South Carolina, Iowa and Idaho with federal policymakers at the National Institutes of Health (NIH) instructing grant applicants to remove mention of mRNA vaccines from their grant applications and report any grants, contracts, or collaborations involving mRNA vaccine technology to both Secretary of Health and Human Services Robert F. Kennedy, Jr. and the White House.
The MRF is working with several stakeholders to prevent these bills from progressing. We will continue to activate patient advocates and meet with state lawmakers to protect treatment options for the melanoma community. Advocate Spotlight – Marit Peterson |
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Advocate Spotlight – Marit Peterson
This month, Marit met with several Texas state legislative staff alongside Moderna on the importance of continued access to mRNA for the melanoma community and showcased the power of patient advocacy.
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| Advocate Reviewer Sign Ups Closed |
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| The MRF officially closed our application to participate in our Peer-Reviewed Research Grant Program as an advocate reviewer for Established Investigator Awards and Career Development Awards on March 31. We appreciate everyone who applied and wants to participate in the advocate reviewer program. |
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| Melanoma Matters Webinar Series: Our Drive for Rural Health Equity
Watch the Full Two-Part Series Get Involved with Advocacy |
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| Are you interested in being involved with our Advocacy program? Email advocacy@melanoma.org.
• Table an Advocacy tent at one of our Miles for Melanoma events
• Write an op-ed to your local paper about issues in melanoma policy
• Request in-district meetings with your federal lawmakers
• Start engaging with your state lawmakers about No Copay legislation |
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| | Upcoming Events:
Patient Symposia Series
- April 26–27: Cleveland Clinic CURE OM Symposium – Cleveland, OH
- May 10: The Ohio State University Comprehensive Cancer Center – Columbus, OH
- May 17: Mayo Clinic – Jacksonville, FL
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| In the News
Click here to read about Axios’ health policy coverage.
Click here to read about KFF’s health policy coverage and research.
Click here to read "Coloradan Battling Rare Cancer Fights Against National Institute of Health Medical Research Cuts" |
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