Mel Mann shares his personal story of survival after being diagnosed with chronic myeloid leukemia in 1995. Given only three years left to live, Mel was shocked and worried about his young daughter and wife. The only possibility for a cure was the difficult-to-find bone marrow transplant. A chance encounter at a donor drive opened Mel’s eyes to the possibility of clinical trials. He enrolled in one in 1998 that gave him access to cutting-edge medicine unavailable to most patients.
Now, almost 28 years later, Mel is still alive thanks to that experimental treatment. He advocates strongly for clinical trials not just because they saved his life, but because they offer hope to patients who have run out of options. As he says, clinical trials give you “the opportunity to get tomorrow’s medicine today.” By bringing trials to more diverse and rural populations, more people can potentially benefit. Mel wants clinical trials offered as a standard part of informed consent so that other families may be spared the grief of a terminal prognosis. Read on for Mel’s perspective on clinical trials as a survivor.
This interview has been edited and condensed for clarity.
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I think clinical trials are important because they allow you to get tomorrow’s medicine today.
In January 1995, I was diagnosed with chronic myeloid leukemia. I was stationed in the military in the Michigan area around Detroit and I went to the doctor because I had back pain and fatigue. The doctor diagnosed me with chronic myeloid leukemia and gave me 3 years to live. That was the prognosis. And, I was in shock because I had a 5-year-old daughter [at the time], and it was going to be hard on my wife and my family.
Dealing with my diagnosis
I was just in shock, and he said the only possible cure was a bowel marrow transplant. And it was hard to find a donor. No one in my family matched. So I did a bunch of [bone marrow] drives around the country in the military, at, colleges, churches, [etc].
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I was doing a a bone marrow drive down in Columbus, Georgia and a gentleman [told me] he had hairy cell leukemia and was near death. He had tried a clinical trial, and it worked for him and suggested that I do the same thing. They’re saving lives.
How clinical trials have changed
Back in 1998, when I started doing clinical trials, it was a lot different than what it is now. The goal of clinical trials now is to bring the clinical trial to the patient, which is better because it helps with a more diverse clinical trial participant community. It helps the rural people [and] it helps the people who cannot afford to travel back and forth.
Why I advocate for clinical trials
So [that creates] a bigger field of people to participate and have an opportunity to take advantage of this state-of-the-art treatment. I’m the world’s longest-living person out of hundreds of thousands of people on the [chronic myeloid leukemia] drug I received, and the drug has helped millions of people [with] different types of cancer. And, so I had a good outcome [and] my daughter grew up and she became a doctor. It saved my life and that’s why I advocate so strongly, about clinical trials.
I only [had] 3 years to live, and it’s almost 28 years later, and I’m still here, and I’m doing well. So I strongly recommend that everyone is informed about clinical trials as part of their treatment.
