Making A Difference: The Melanoma Research Alliance

A full waiting room. To most of us, it’s a bad sign, as we anticipate the excruciatingly dull minutes ahead. But at a meeting I attended this past week, it was a sign of hope, of progress; of making a difference.

I was in Washington DC to attend the annual scientific session of the Melanoma Research Alliance (MRA) in Washington DC, an organization that is only eight years old. When this group first met, it was made up of a relative handful of melanoma researchers and clinicians who came together to figure out what they could do to discover and promote more research and better treatment options for patients with melanoma.

The people behind the effort were Michael Milken and Debra and Leon Black. For them the mission was personal: Mr. Milken was a prostate cancer survivor who wanted to devote his energies to accelerating discoveries in cancer care. The Blacks are also well known in financial circles, and Ms. Black was (and remains) a melanoma survivor. 

At the time, the landscape for patients with advanced melanoma was bleak. There were a couple of available treatments, but they really didn’t have much of an impact on improving or extending the lives of patients. That first meeting was colored by a pall in the melanoma community about the lack of options. Worse, young researchers weren’t particularly interested in entering the field, which for decades seemed pretty much a detour to a non-rewarding career. I can personally attest–as a physician who focused on the treatment of advanced melanoma 40 years ago–not much had changed over that period of time.

Enter Mr. Milken and the Blacks. They put the researchers into a smallish room less than a decade ago, and encouraged interactions. They pledged their financial backing, which continues to this day. They put in place an arrangement to fund the administrative needs of the organization, and promised that any other funds that came in would be funneled directly into melanoma research. The results have been truly impressive.

For a day and a half this week, over two hundred people filled a room at a Washington hotel discussing cutting edge research for hours on end. And there wasn’t anyone in that room who wasn’t fully absorbed in the information provided, or the vigorous discussions that ensued.

We learned that what has happened in the treatment of melanoma over the past several years is nothing short of remarkable. So a disease that recently seemed left out of the progress seen in other cancers, melanoma is now a leader in the field, providing hope for not only those with advanced melanoma but as the leading edge for research that’s helping other cancers as well. Eleven new melanoma treatments or combinations of treatments have been approved by the Food and Drug Administration since the MRA was founded, and there are 30 cancers for which there are currently clinical trials on drugs that initially showed promise in melanoma.

Despite that good news, it was frequently noted during the presentations and discussions that the majority of melanoma patients don’t respond to the new immunotherapy drugs, and those that receive targeted therapies (which are sometimes chosen based on genomic analyses) have responses that are too short in duration. Those are the focus of ongoing research, and although I cannot share the data from the conference (we all agreed not to disclose the data presented), I can tell you that what I saw left me awestruck at the progress being made.

And much of the progress we saw was presented by young researchers, the people who are our hope for tomorrow. Complex genetic analyses of melanoma tumors that will help us better understand how this cancer behaves in its very complicated fashion; an increasingly deep understanding of how our bodies harness our own immune systems to attack melanoma when stimulated by immunotherapies; cancer fighting viruses that can train the immune system to attack the tumor wherever it may lie. You sit there and realize that without the encouragement and grants provided by organizations like MRA these discoveries would probably not be made as quickly as has been the case.

This is all pretty exciting stuff. But the human impact hit home when one of the clinical researchers made the observation that in the past his waiting room was never full, because patients with advanced melanoma didn’t survive. Now, his waiting room is packed–standing room only–and he finds himself passing his long term survivors off to a survivorship clinic for their continued care. More and more patients are doing well, living longer, all due to the treatment discoveries that have made a genuine difference in the quality and quantity of so many lives.

In clinical research we frequently talk about what we call progression free survival and overall survival. We talk about how far the tumors shrink, and whether a treatment improves the quality of life. We spend a lot of time looking at and deciphering statistics. We have never talked about packed waiting rooms.

Without the encouragement, guidance and commitment of people like Mr. Milken and the Blacks, I suspect the waiting rooms would still be pretty empty. And, of course, let us not forget the patients, their families and caregivers who all have given so much to make this progress possible. These unsung heroes had a vision and made it happen. There are people around the world who owe much to what you and the researchers you support have accomplished.

To the founders, researchers and friends of MRA: Thank you for all that you have done—and what you will continue to accomplish.

That, my friends, is what making a difference is all about.

 

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