Melanoma Research Foundation

Melanoma Advocacy: Our Priorities and Progress

From the desk of Douglas Brodman, Board Chair:

As we approach the end of the 117th Congress, I am so proud of the work our advocates have done to advance melanoma research, increase awareness and improve the quality of life for melanoma patients. This year alone, your advocacy has directly contributed to the survival of the Melanoma Research Program, increased funding for the National Institutes of Health and funding for the Centers for Disease Control and Prevention to implement skin cancer prevention programs.

But the Melanoma Research Foundation (MRF) hasn’t stopped there. Because our patients’ lives are full and complex, so is our approach to advocacy. We have had a hand in shaping policies that affect prescription drug affordability, clinical trial diversity and access to health care providers no matter where melanoma patients live. We could not do this work without all of you. Your stories matter and I hope that as we await the start of a new Congress, you will once again lend your voices to this important mission.


Douglas Brodman

Chair, Board of Directors

Congressional Melanoma Research Program Receives $40 Million in House Bill

In June, the House Committee on Appropriations released their markup of the Fiscal Year 2023 Defense Appropriations bill. As part of the bill, the Congressionally Directed Medical Research Program (CDMRP) funding is dependent upon an allocation from Congress every year. The CDMRP contains several dedicated funding streams for various cancers and conditions that warfighters and their families are at an increased risk of developing. Notably, melanoma has received its own dedicated line item thanks to your advocacy since 2019. This year, the House Defense Appropriations Bill included $40 million for the Melanoma Research Program (MRP) within the CDMRP.

Funding from the MRP has been awarded to researchers all across the country, helping to develop new therapies and deepen our understanding of this disease.

The Senate still has not voted on their appropriations package. Once the Senate takes that vote, any discrepancies between the Senate version and the House version will be agreed upon in conference before being signed by the President.


Language on Melanoma Included in LHHS Appropriations Bill Report

The MRF submitted language to the Labor, Health and Human Services, Education and Related Services Subcommittee to include in their appropriations bill report urging the National Cancer Institute “to continue to support research directed at genomic and mechanistic characteristics of mutagenesis; optimization of prevention strategies; and early detection and risk declassification strategies that leverage artificial intelligence, access to large databases, noninvasive technologies, and molecular markers that will support precision medicine.” The committee requested an update to these requests in fiscal year 2024.

Congress Passes Continuing Resolution to Avoid Government Shutdown

On Friday, September 30, 2022, the House voted on a continuing resolution first drafted and passed in the Senate. This measure arrived in time to avoid a government shutdown and funds the government at fiscal year 2022 levels through December 16, 2022. Both chambers of Congress are now in recess until the November election. When Congress reconvenes, members will need to finalize their appropriations package in order to determine the federal fiscal year 2023 budget.

Of note to the melanoma community in particular, the CDMRP will continue to be funded. However, historically, continuing resolutions impose difficulties on the research community and can lead to conservative risk-averse actions taken on behalf of funding organizations due to uncertain funding streams.

The MRF will continue to urge Congress to vote on a final appropriations package as soon as possible to ensure life-saving melanoma research continues without impediment.


Public Health Emergency Continues to Extend COVID-era Telehealth Access

On October 13, 2022, the Biden Administration extended the public health emergency for an additional 90 days, allowing patients and physicians to continue to use telehealth at their homes, over the phone, and across state lines. However, these protections will expire once the public health emergency ends unless legislation is passed allowing the Department of Health and Human Services (DHHS) to waive telehealth rules at their discretion.

Telehealth advocates have urged Congress to take action ensuring that these protections remain available to patients and health care providers. Read on to find out how the MRF has engaged on this important access tool.

Partnering with PAN Foundation to Achieve Drug Cost Relief for Patients

On August 16, 2022, President Biden signed the Inflation Reduction Act into law, protecting Medicare beneficiaries from the high cost of prescription drugs through a mechanism known as cap and smooth. The law caps the annual out-of-pocket expense for prescription drugs at $2,000 by 2025. The law also includes a provision eliminating the five percent of prescription drug costs cost-sharing measure that Medicare Part D recipients incur as part of their catastrophic phase of coverage. Additionally, Medicare beneficiaries will be able to spread the cost of that out-of-pocket expense over the course of the year. Lastly, the bill enables Medicare to negotiate the price of certain high-cost drugs over the course of the next decade, primarily those without generic or biosimilar alternatives covered under Medicare Part B (administered in a physician’s office) and Part D (obtained through a pharmacy such as CVS or Walgreens)

The MRF partnered with the PAN Foundation to advance this important bill through Congress and advocates just like you shared how this monumental legislation would impact their everyday lives. We will continue to monitor the impact that this landmark legislation has on melanoma care for all patients regardless of insurance status.

Comments to NIH on Women’s Health Research

In September, the MRF responded to a request for information issued by the National Institutes of Health (NIH) on how to conduct research that better serves and improves the health of women. In the letter, the MRF shared how we have successfully identified health behaviors as drivers of risk, and targeted awareness and educational campaigns reflective of women’s lived experiences. The MRF also encouraged the NIH to consider the complex reasons why women enroll in clinical trials at rates lower than men, such as caregiving responsibilities and lost wages, and strive to create a research environment that removes barriers where applicable.

Sign On Letters with Advocacy Partners

The MRF is proud to partner with organizations and alliances to amplify the voice of the melanoma community and advance initiatives to improve the lives of patients and caregivers. Read below to learn more about three recent initiatives that we supported through sign on letters:

Alliance for Connected Care:

Together with an astounding 374 organizations, the MRF signed onto a joint letter to bipartisan leadership of the U.S. Senate urging action on telehealth legislation this fall. Policy certainty beyond the COVID-19 public health emergency (PHE) is essential to continuing access to telehealth for both Medicare and commercial market patients.

Haystack Project:

On September 6, the MRF joined the Haystack Project in a letter to the Centers for Medicare and Medicaid regarding provisions of the 2023 Physician Fee Schedule. In the letter, advocates expressed the need for the rare disease community to retain telehealth access and for coding guidelines to take into account the often difficult road to diagnosis for rare disease patients.


The MRF joined American Cancer Society Cancer Action Network (ACS CAN) and 24 other patient advocacy organizations urging Governor Gavin Newsom of California to sign SB 912 in support of biomarker testing. Precision medicine can improve health outcomes for patients and the MRF remains committed to ensuring melanoma patients receive the most appropriate care for their individual journey.

Upcoming Advocacy Events

Stay tuned for updates about new learning modules, advocacy alerts, calls to action and the 2023 Advocacy Day event to be held in Washington, DC. Make sure to be the first to know the latest news in melanoma advocacy by signing up to be an MRF Advocate today!

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