Advocating for Bone Marrow Donations and Clinical Trials in Leukemia
Diseases
Blood Disease, Cancer
Issues and Challenges
Mel has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Transportation, Geography, Lodging
My Story
In January 1995, I was a major in the Army stationed in Michigan with my wife and five-year old daughter. I went by the post clinic to get the results of some medical tests. The tests showed that I had chronic myeloid leukemia. The prognosis was three years to live unless I had a bone marrow transplant.
No one in my family matched me as a donor and that is when I had my first experience with some the problems associated with healthcare. Because I was black, I had a one percent chance of finding a bone marrow match. The previous year, 2000 blacks were searching for a matching donor, and only 20 of them found a donor. One percent.
Within weeks, I became a patient advocate for marrow donation and started conducting marrow drives and educating communities about marrow donation. I conducted drives at churches, malls, military bases, and other groups. I even had friends who conducted drives in places such as Germany, Hawaii, and the Pentagon.
I took a medical retirement from the Army and moved down to Atlanta, Georgia, where I continued to conduct marrow drives.
Eighteen months after my diagnosis, I went to a marrow drive put on by my aunt. A businessman, who did not look like me, came to the drive. He had a different type of leukemia called hairy cell leukemia. He commended me on the lifesaving efforts of the marrow drives, but he also recommended that I try clinical trials. He stated that he had been near death, but he went out to a cancer center in Texas and a clinical trial saved his life. This was the first time anyone had even mentioned clinical trials to me. Only five percent of clinical trials consist of black patients.
I made an appointment with his doctor and flew out Texas. I entered several clinical trials. I flew back and forth to Texas every three months, sometimes staying months at a time. Around the three-year mark, all the medications had stopped working. I asked the doctor if there were any more drugs available. He said there was one, but they were having problems with it in the lab in the livers of animals.
Six months later, the drug was approved for use in a phase one clinical trial. I flew back out to Texas, stayed for three months and the medication worked. I am now the world’s longest living person treated with the drug Gleevec.
Being on a clinical trial is expensive and not everyone can afford the treatment I had. Patients must juggle the costs associated with travel, lodging, meals, parking, childcare, eldercare, and pet care, missing work and so forth. This is why I advocate for laws such as the NIH Clinical Trial Diversity Act to make clinical trials more accessible and diverse.
My Motivation and Inspiration
My personal experience with illness motivates me to advocate for others. Being in a what can seem a hopeless situation with few or no options can be overwhelming. Knowing that there are people advocating for policy changes engenders hope.
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