Advocates are the Voice of the Melanoma Community

From the desk of Advocacy Officer Kim Watkins:

Each day, the MRF strives to advance care and outcomes for melanoma patients across the world. Our advocacy program helps drive that mission by helping local, state and federal lawmakers understand the needs of the melanoma community.

A few weeks ago, melanoma advocates from 14 states gathered in Washington, DC to share their stories with lawmakers and advocate for melanoma research, increased access to telehealth, diversity in clinical trials and melanoma prevention. This annual event brings together patients, caregivers, survivors, thrivers and healthcare professionals across all melanoma subtypes to advance care for melanoma patients. Policy experts from the Alliance for Connected Care, American Cancer Society Cancer Action Network, Bristol Myers Squibb, PAN Foundation, Thomas Jefferson University and Van Scoyoc Associates provided invaluable insight into legislation and issues that helped prepare our advocates before heading to the Hill.

“On behalf of the Colorado contingent, I want to thank the MRF for an incredible few days in DC for Advocacy Days,” said advocate Stacey Sepp. “We felt very well prepared going into our meetings with our Congressional reps and were thrilled with the opportunity to advocate for ourselves as melanoma survivors and on behalf of the entire community of patients, survivors, and all affected.”

Advocacy Days is once a year, but the work continues. The MRF recently joined the Advisory Board for the Alliance for Connected Care to amplify the voice of the patient community in telehealth policy and will continue to use our position as melanoma advocates to urge lawmakers to pass legislation that makes participating in a clinical trial less costly, protect telehealth access and fund research for all forms of melanoma.

March was also Mucosal Melanoma Awareness Month, and our advocates are a powerful voice for this melanoma subtype that is both very rare and in great need of further research and improved treatments. Advocate Chris W. shared his powerful story in a recent blog post, and this month we were proud to publish video testimonials from JB W., mucosal melanoma survivor and Cristian J., a caregiver.

We encourage you to continue advocating for prevention and early detection of melanoma at the state level. As we prepare for Melanoma Awareness Month this May, we invite you to submit a state proclamation request to your governor to declare May Melanoma Awareness Month. It is imperative to raise awareness about the dangers of melanoma and whether you are a seasoned or first-time advocate, you too can impact the melanoma community by taking this easy step. Please contact advocacy@melanoma.org to get involved and learn more about your state’s specific proclamation requirements.

None of this would be possible without the dedication of melanoma advocates just like you. If you would like to become more involved with the Advocacy program and receive the quarterly advocacy newsletter, sign up here and make your voice heard!

With gratitude,

Kim Watkins

Advocacy Officer