Taking Ed’s Melanoma Fight to Capitol Hill

I was first diagnosed with melanoma in 1996. Thanks to my primary care doctor, who identified an irregular mole on my back during a routine physical, and my dermatologist, Dr. Glenn Fuchs, who biopsied then removed the mole, it was identified very early and the melanoma was considered in situ. Every 4 to 6 months since, I visit Dr. Fuchs and over those years he’s removed a number of irregular moles. 

I was first introduced to the Melanoma Research Foundation (MRF) in the late 1990s by a neighbor, Chad McDonald, who has since joined the MRF’s Board of Directors. Chad realized that as a melanoma survivor, a former Capitol Hill staffer and a health care lobbyist I might be helpful to the cause by educating Congress about the need for increased melanoma research and more Federal support for skin cancer prevention. Soon after Chad suggested this, I realized that even though melanoma is the leading cancer for young women under 30 and even a Presidential candidate had survived several melanoma diagnoses, there was little awareness of melanoma on Capitol Hill. Additionally, I quickly learned there are insufficient NIH resources devoted to finding treatments and cures for the disease. Thanks to the efforts of the MRF and working with the broader skin cancer prevention community, we have succeeded in creating a line of funding for melanoma research through the Department of Defense and persuaded the Food and Drug Administration to advance proposed rules preventing young people under 18 from using tanning beds.  

The melanoma community has made significant advances since the late 1990s but there’s more to be done. And we need to be organized, to reach out to our Members of Congress, to visit their offices, and to speak with a common voice.

Join me and other melanoma advocates like yourself March 13-14, 2016 for the annual MRF Advocacy Summit & Hill Day! The free summit will begin with a comprehensive training, culminating in meetings with your state legislators. With keen competition for federal dollars, it's critical we make a strong showing to represent the interests of the melanoma community.

Make your voice heard!

Written by Edward Long, Ph.D., former member of the MRF Board of Directors, health appropriations and policy expert and melanoma survivor.