The Melanoma International Foundation (MIF) is a nonprofit organization that provides a support community and scientific guidance for patients with all stages of melanoma and their families and caregivers. The MIF was founded in 2003 by Catherine Poole, who was diagnosed with melanoma 23 years ago. I spoke with Poole about the MIF and her role as a melanoma patient advocate.
How did the MIF come about?
We just had our 10-year anniversary! I am really happy for the grassroots support we have received. Twenty-three years ago when I was pregnant with my son, I had melanoma. It was a really scary time in my life and I found so much misinformation everywhere. The Internet was not developed yet, and there was one book in the library about someone who died of the disease. I talked to my oncologist, DuPont Guerry, who was then the head of the melanoma program at the University of Pennsylvania, and he agreed to write a book with me. So we wrote Melanoma: Prevention, Detection and Treatment in 1998 and then an updated version in 2005. Patients who needed personalized help reached out to me and that is when I decided to start this foundation.
I could not find any reassurance during my diagnosis even though I was fairly low risk; there was nothing out there. I wanted to create an environment of support and scientifically-backed information for people. I started with a helpline, and then we started the Web site and moderated forum, which was very important. The forum and Web site broadened our outreach to an international audience. We now have over 37,444 melanoma posts with 5,000 topics discussed. In addition, our webinars bring worldwide attention to the experts discussing the latest therapies.
How did the foundation evolve to an international level?
Our international audience on our forum (www.melanomaforum.org) has grown exponentially. We also provide support for patients from at least 15 countries. It helped us develop a sister organization in Belgium, called the Melanoma Independent Community Advisory Board (M-ICAB), which is part of a broader European patient program. The MIF had a presence helping patients, but now we have this relationship with one of the fastest growing patient organizations in Europe.
You constantly engage with patients through the forums on your site, providing advice, information, and positive support. What are your other roles in the foundation?
Dr. Guerry has trained me extensively in many areas to understand the evolution of this disease and I have learned a lot from going to clinical meetings. I help patients understand their pathology to help them find therapies, clinical trials, and also, to cope with side effects and psychosocial aspects. I do this mostly through the forum, by phone, and by e-mail. I am also involved in the day-to-day administration of the foundation and work with the government on patient issues.
How has your interaction with patients changed with the recent evolution of therapies now available to melanoma patients and the many new drugs currently in clinical trials?
The world has definitely changed in melanoma. Pharmaceutical companies are now interested in melanoma. We can provide them with crucial information about patient needs, access, and other issues that they would not know about without working with patients on the frontline like we do. Melanoma is certainly getting much more attention and it has been wonderful to offer more options to patients.
Users of the MIF patient forums are knowledgeable and foster a sense of community to exchange support and information. How has that evolved? And do you think that patients now are more informed about their diagnosis and treatment options?
I don’t think that patients overall are more knowledgeable. The ones that are on our forum are really the ‘cream of the crop.’ I think we have really smart folks who have done their research and who generously share information with other patients on our forum. Our Web site has a transparency and accuracy designation, the HonCode seal, so when people come to our site they know they will receive scientifically-backed, accurate information. We have a scientific advisory board of researchers and clinicians that also provides feedback on the information. I carefully moderate the forum to make sure misinformation is not spreading from patient to patient.
Everyone reacts differently to different treatments, so we have to be careful how we communicate—for example, about side effects—in this public forum. It is a safe place to come to that came about because we were upset by other sources on the Internet that were not moderated and had a lot of inaccurate information. We actually started the forum with the advisory of Keith Flaherty, MD, a melanoma expert, from Massachusetts General Hospital. He is the one who suggested we divide the forum into early stage, stage III, and late-stage patients. We have also added a caregiver section.
What are some of the events that you host?
On the Web site, we host webinars. We are doing one in May with Steve Rosenberg, Chief of Surgery at the National Institutes of Health. We have clinician researchers provide information for patients and we are very fortunate that we get the best clinicians who agree to take part. At the end of the webinars, I get to be the voice of our patients by asking questions they have e-mailed to me. People seem to like the webinars, they understand them, and it helps them make more informed decisions.
Do you help patients find clinical trials?
Absolutely—I work both individually and with the forum patients to find trials they can enroll in that are both geographically suitable and that will be the best fit for their situation.
How do you stay up-to-date on the latest clinical trials information?
I have contacts at the pharmaceutical companies that are running the trials who update me on where the trials are and which are accruing. I am in touch with our scientific board. If I hear about a trial I ask them about it and their experience with it, if any. I encourage patients to call the researchers who are running the trials to get the best information and not to depend on www.clinicaltrials.gov, because it is not always up-to-date. I do this as well to get up-to-date information.
What do you see as the current key issues for patients?
I think access to clinical trials and new therapies are the biggest issues. Some of the phase l trials are getting very restrictive and barring patients who have previously tried three or four different therapies. Exclusion criteria can put a damper on access. Cost is also an issue—some of the new drugs are very costly. Particularly in Europe, there has been less access to some of the novel therapies, and countries are refusing to approve some of these treatments because of the cost. This is really hurting patients. I don’t know the solution but for pharmaceuticals and government to put the patient at the center of their work.
What are you currently working on?
How to better raise awareness for melanoma. Patients need access to new therapies and we are fortunate to have options. But when they go to outlying areas, they are still offered old drugs or nothing except lack of hope. General oncologists need to get up to speed on melanoma treatment. I would like to reach out to them for that education. Patients and caregivers need to be assertive with their doctors and demand the latest therapies and clinical trial information. This is a worldwide problem and increased access will save lives.