A Global Effort Against Melanoma
In November, the MRF convened an international group of melanoma patient advocates with the goal of advancing the global fight against this disease.
Three years ago a pharmaceutical company asked me to attend a meeting with other patient advocates from around the world. The company wanted our insight on melanoma issues. Two years ago a different company approached me with the same request. In both cases we had good meetings. I got to meet great people doing important work around the world – we compared notes and shared ideas. Two things bothered me about these meetings, however. First, the agenda was driven by the company rather than by the patient advocacy groups. Second, I saw very little outcome from the meetings. Nothing really changed. Nothing was truly accomplished.
What if we could organize our own meeting? Set our own agenda? Hold ourselves accountable for making progress? With this vision in mind I pulled together a small group of people to organize a global coalition of melanoma patient advocates. The group included a representative from Sweden, Brazil, and Australia.
Together agreed on several core principles:
- We wanted to form a group of people who are willing to actually do some work, not just attend meetings.
- We wanted to be inclusive and listen to as many people as possible, but the first meeting needed to be small, with no more than one representative from any one country.
- We wanted to have specific outcomes from the meeting, with the expectation that participants would be active in the months after the meeting.
With that in mind we sent a survey to about 40 patient groups from around the world, asking for input on areas of greatest need for their organization and the people they serve. The response was amazing. Almost everyone responded, everyone expressed interest in becoming involved with a global group, and all but one person felt that a global coalition could have a positive impact.
In November representatives from 11 different countries met in Zurich to talk about the top concerns identified in the survey, and to lay the groundwork for a new coalition. The top areas were:
- Raising awareness of melanoma globally;
- Access to new and emerging drugs and therapies; and,
- Access to clinical trials.
During the meeting, I learned the New Zealand health service does not cover the cost of any of the new melanoma drugs that are available in the U.S. I learned that many people in Romania believe if a doctor touches a mole it will turn into cancer, so many patients with suspicious lesions don’t go to the doctor. I learned that in Brazil, access to care is largely restricted to wealthy people who can pay private doctors for special treatment, and that these doctors often receive lavish gifts for their services.
The conversation on the key topic areas was fascinating and exciting. We identified some action items that can impact each area, and formed working groups to keep the effort going.
At the end of the meeting I told everyone that our time together had exceeded my expectations. I also said, though, that the success of the meeting would not be known for at least a year. If we convene again a year from now and nothing has changed then this first meeting was a failure. If we come together after 12 months and can point to specific progress in each of the three key areas, then it was a success. Given the commitment, energy, and passion in the room, I am betting on success.
The inaugural Global Melanoma Coalition meeting was hosted by the Melanoma Research Foundation, Melanoma Patients Australia, Melanoma Patient Network Europe and Instituto Oncoguia, and supported by grants from Roche and Merck. Blog post written by the MRF's Executive Director, Tim Turnham.