Melanoma Research Foundation

Legislative Advances Supporting the Melanoma Community

From the desk of Douglas Brodman, Board Chair:

As Congress approaches their August recess, the MRF remains hard at work ensuring equitable access to care and continued investment in melanoma research funding. Since Advocacy Days in March, federal lawmakers have advanced several of our legislative asks including defense-funded melanoma research, telehealth, and a tanning bed ban for people under the age of 18. While these advances are certainly encouraging and evidence of how powerful the melanoma community is when we share our stories, our work as advocates is far from complete. I hope that you will join me in continuing to engage lawmakers as we head into the fall.


Douglas Brodman

Chair, Board of Directors

2024 Defense Appropriations Bill Includes $40 Million for Melanoma Research

Last month, the House Appropriations Committee passed the FY24 Defense Appropriations bill including $40 million for the Melanoma Research Program (MRP) funded through the Congressionally Directed Medical Research Programs (CDMRP). Yesterday, the Senate Appropriations Committee approved their own FY24 Defense Appropriations bill also including $40 million for the MRP. The MRF once again advocated for $40 million for the MRP at our Advocacy Days event in March and spoke to Congressional staffers about the importance of the MRP and CDMRP with the Defense Health Research Consortium (DHRC).

While this represents an important step in funding for the program, the MRF will continue to monitor and advocate to lawmakers about the importance of voting on appropriations bills before the end of the fiscal year.


House and Senate Reintroduce CONNECT Act

During Advocacy Days in March, a key legislative priority brought by our advocates was the expansion of telehealth access for Medicare beneficiaries through the permanent removal of geographic restrictions on who can use telehealth services and the elimination of originating site requirements that prevented patients from receiving telehealth services from home.

Last month, a bipartisan group of legislators in the House and Senate introduced the Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act of 2023 (S.2016 and H.R. 4189), which includes these important provisions. The MRF joined with over 160 organizations to endorse the bipartisan legislation and was included in Sen. Schatz’s endorsement press release.

We applaud our advocates for their work to advance these much-needed expansions to healthcare access and urge lawmakers to hold a committee hearing on this important legislation. To stay updated on this measure and all the MRF's advocacy priorities, visit the Advocacy Action Center.


MRF Joins ACS CAN in Advancing Equitable Access to Pharmacogenomic Testing

Last month, the MRF was proud to be among thirteen organizations endorsing the American Cancer Society Cancer Action Network’s (ACS CAN) recently released consensus recommendations for improving equitable access to pharmacogenomics in cancer patients. Pharmacogenomics is the study of how inherited genomic variation is associated with the clinical effectiveness or toxicity of drugs.

 “Groundbreaking advances have been made in the treatment of melanoma over the past decade; however, not all patients benefit and treatments often come with side effects. Pharmacogenomics has the potential to offer melanoma patients the ability to have treatments and dosages that are tailored to their own particular genetic makeup to help minimize side effects and maximize therapeutic benefit. The MRF is proud to partner with ACS CAN to help ensure that all patients participate in the identification of and access to pharmacogenetic testing," said MRF CEO, Kyleigh LiPira.

The recommendations include diversity in oncology research participants, improved databases, and improved coverage of pharmacogenomic testing. You can find the full list of recommendations here.

FDA Advances Tanning Bed Ban for Minors

Since it was first proposed in 2015 during the Obama Administration, the MRF has encouraged the Food and Drug Administration (FDA) to finalize a rule that would prohibit people under the age of 18 from using indoor tanning beds. Last month, the FDA took an important step to finalize the proposed rule by including the proposed rule in the June Unified Agenda with an anticipated final ruling due in December. This marks the first significant action that the FDA has taken on this issue in several years.

Melanoma is the most common form of cancer for young adults ages 25-29 and the second most common form of cancer for adolescents and young adults 15-25 years old. Exposure to UV radiation from tanning beds at young ages contributes to the development of skin cancer, including the potentially deadly melanoma, in young people. Each year, more than 419,000 cases of skin cancer, including both melanoma and non-melanoma skin cancers, are linked to indoor tanning in the U.S. alone. Other studies have found a 59 percent increase in the risk of melanoma in those who have been exposed to UV radiation from indoor tanning, and the risk increases with each use. Even a single indoor tanning session can increase users’ risk of developing squamous cell carcinoma by 67 percent and basal cell carcinoma by 29 percent. Despite these significant risks, approximately 7.8 million adults in the United States still engage in indoor tanning.

Previously, the MRF has encouraged members of Congress to write the FDA and encourage them to finalize the proposed rule, sent letters to the FDA, and last fall, met with FDA officials on this issue. The MRF will continue to track the progress of the proposed rule and engage regulatory officials to ensure the complete passage of this important regulation.

Congratulations to Advocate Stacey Sepp!

The MRF is pleased to honor our inaugural Advocate Awardee, Stacey Sepp, at our 12th Annual Denver Gala in September. The Advocate Award is intended to recognize an individual who exemplifies leadership and commitment to bettering the lives of melanoma patients through involvement in federal or state issues. Stacey is a stage 4 melanoma survivor and advocate who has participated in the MRF’s Advocacy Days and served as a consumer reviewer for the Congressionally Directed Medical Research Programs’ (CDMRP) Melanoma Research Program (MRP). In addition, she has worked to increase access to free sunscreen in her home state of Colorado.

Advocacy is part of the MRF’s tri-partite mission, including research and education. Advocates like Stacey help policymakers understand the unique needs of the melanoma community and affect real change. To register to attend our Denver gala, click here.

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