Connecting the Dots – Clinical Trials and Patient Engagement
By Cody Barnett, MPH, MRA Director of Communications & Patient Engagement | 15 November 2017 | Allies & Partnerships, Melanoma Stories, News
Introducing the Melanoma > Exchange discussion group and support community
The Melanoma Research Alliance is committed to ending suffering and death due to melanoma by accelerating the pace of scientific discovery. In our first ten years of existence, we have directly funded $88 million in the areas of prevention, diagnosis, and treatment. In fact, we are now the largest non-profit funder of melanoma research worldwide. We know that advancing science is our best bet of conquering melanoma – and other cancers – forever.
Today, patients have eleven additional Food and Drug Administration (FDA) approved therapies than they did just ten years ago. Together, these new treatments have increased the five-year survival rate and have given patients and their families new hope. This drumbeat of progress continues to accelerate; today more than 400 clinical trials focus on melanoma are underway. It’s more important than ever that patients and their families have access to a supportive and patient-focused sources of information about how best to navigate both approved and emerging treatments.
This is why MRA is thrilled to announce the launch of the Melanoma > Exchange, a melanoma treatment and research focused discussion group and support community. Through the Melanoma > Exchange, anyone touched by Melanoma can find support, ask questions, and build community among people who share a similar experience.
The Melanoma > Exchange, powered by Inspire, is a free and open on-line community that is led by patients with firsthand understanding of melanoma and clinical trials and experts from the MRA staff. Together, these moderators have cultivated a unique environment where patients can get true insight into key milestones such as being diagnosed, choosing and going through treatment or finding the right clinical trial, and addressing any implications with friends and family.
Jamie Goldfarb, a self-described clinical trial advocate, was declared disease free two years after starting TIL therapy as part of a National Cancer Institute clinical trial for Stage IV melanoma. She will be one of many patients and former patients who will be sharing their experiences to support the community. (learn more about Jamie’s journey here).
“The only people who can truly understand what you are going through are other people who have experienced it. Your friends and family are crucial, but having melanoma can be a very isolating experience. People like me, who have gone through this, we are uniquely positioned to answer questions about what it’s like to go through some of these treatments. How it feels, how it affected our families, and other things that clinical staff just can’t know,” says Goldfarb.
When Cheryl Trocke’s nine-year old son Graham was diagnosed with melanoma in 2013, she quickly learned that when it comes to kids, there were no great treatment options and that care can vary greatly based on where your child is treated. After surgically removing the primary tumor, Graham’s doctors suggested a treatment plan of ‘wait and see.’ Since then, she has become an advocate for pediatric research (learn more about Cheryl's journey here).
Cheryl is excited to participate in the Melanoma > Exchange because she’s contacted every week by frightened parents, who ask: “what do I do?” She believes that the new community is exactly what is needed to make people understand and better access the many resources available to them.
Tracy Callahan knows something about melanoma. She's a three-time survivor and founder of the Polka Dot Mama Melanoma Foundation. She's passionate about raising awareness, educating the community on sun safety, and promoting early detection of melanoma and skin cancer. Her nickname as "the polka dot mama" comes from two sons, Matthew and Carter, who fondly nicknamed her after her first melanoma diagnosis in 2015. She's excited to also participate in the Melanoma > Exchange. (learn more about Tracey's journey here).
The Melanoma > Exchange is the first initiative in a three-pronged strategy to help patients understand how clinical trials and research have the power to benefit them, while also advancing treatments overall for the field. Today, only 1 out of 20 cancer patients choose to enroll in a clinical trial, despite clinical trials often being the best way to get cutting-edge treatment. Lack of enrollment in clinical trials is one of the biggest obstacles to bringing a drug to market and today there are more than 400 melanoma-focused clinical trials currently recruiting patients. “We believe a real obstacle for patient participation in clinical trials is the lack of awareness to such opportunities, particularly for patients seen outside of premier cancer centers, along with some of the myths that exist about trials,” says MRA President and CEO Michael Kaplan.
“You aren’t a guinea pig and you always have the choice to discontinue a clinical trial. For most cancer-focused clinical trials, no one gets a ‘sugar pill’ like we see on television. These are damaging myths that are keeping patients away from trials where they can access promising treatments and get closely monitored. We hope Melanoma > Exchange is able to shine some light on win-win proposition that clinical trials represent,” says Kaplan.
Join Tracy, Cheryl, and Jamie at the Melanoma > Exchange here.
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