The MRF held its 16th Annual Advocacy Days in Washington, DC and brought together over 70 advocates – representing 22 different states across the country – to advance key federal policy priorities of the melanoma community. This year, patients, caregivers, researchers, clinicians and loved ones heard from policy experts representing Holland & Knight lobbying firm, the Congressionally Directed Medical Research Programs (CDMRP), Johns Hopkins University, the Alliance for mRNA Medicines and Akin Gump.  

Our advocates met with 47 congressional offices to champion: 

Our Advocacy Days were made even more special with the participation of over 7 members of the medical research community. We were honored to host recent MRF-funded research grant awardees as their expertise further amplified our collective voice and drive the urgency of these critical issues.   

Thank you to all the advocates who travelled from every corner to share stories and shape policy change to ultimately advance melanoma research, prevention and treatment. Together, we are working toward a future where a cure is possible. 

To view images from this year’s Advocacy Days program, click here and to hear a few heartfelt testimonials about our advocates’ purpose, view this YouTube playlist.

In 2015, the Food and Drug Administration (FDA) issued a proposed rule stating that sunlamp products, such as indoor tanning beds, are not to be used by people under age 18. This action also proposed a requirement that adults choosing to use tanning facilities had to provide written risk acknowledgement every six months. 

On March 16, the FDA withdrew these recommendations, ensuring that these protections – including the tanning bed ban for minors and other risk acknowledgement requirements – will not be enacted at the federal level. 

The MRF recognizes that these changes are harmful to the American people, as lowering age restrictions and removing barriers to access makes damaging tanning beds more available. In response, the MRF led a sign on letter to the FDA expressing disappointment in their decision to retract the proposed rule and encouraged them to reconsider the best means for addressing the issues covered by the proposed rule and related issues regarding access to sunlamp products.

Tennessee  

In March, two bills targeting mRNA were scheduled for committee hearings in the Tennessee General Assembly and Senate. House Bill 1852 and Senate Bill 1767 looked to ban mRNA statewide without exemptions for cancer treatments, rare disease, clinical trials or any other lifesaving FDA-approved therapeutics. In response, the MRF provided patient testimony to both Tennessee House and Senate committees to successfully defeat both bills and help maintain access to as many treatment options as possible for patients. 

The MRF is closely tracking any further developments and will continue to work with the stakeholder community to prevent the passage of anti-mRNA legislation in Tennessee. 

South Carolina 

In late January, the South Carolina House Medical and Health Affairs Subcommittee held a hearing on a concerning piece of anti-mRNA legislation. Introduced by State Rep. Josiah Magnuson (R-38), House Bill 4262 sought to ban the use of mRNA-based therapies by healthcare professionals and establish penalties for any utilization. In strong opposition, the MRF’s Director of Public Policy and Advocacy testified at the committee hearing to share the impact a mRNA ban would have on patient access – especially being a promising treatment option for patients with advanced melanoma. Additionally, the MRF submitted written testimony and a body of evidence in support of mRNA as an emerging cancer therapeutic and the promising results it’s yielding for the community. Through combined efforts, the bill was successfully stalled and did not advance out of committee.  

The MRF will continue to monitor any further legislative activity on H. 4262 and will participate in any future efforts to block similar bills from being introduced in the state of South Carolina.