Patient Perspectives: Closing the Gap of Racial Disparity in Chronic Myeloid Leukemia
African Americans can frequently experience barriers in seeking out lifesaving clinical trials for cancer treatments.
In January 1995, I was diagnosed with chronic myeloid leukemia (CML) and given 3 years to live. I was a 37-year-old Army major living in Michigan with my wife and 5-year-old daughter. The doctors informed me that the only possible cure for my leukemia was a bone marrow transplant but since I did not have a related donor, I had to turn to the National Marrow Donor registry. In searching for a better outcome, I became acutely aware of the health care disparities in underserved populations.
Oftentimes, marrow matches come from within one’s own ethnicity. As an African American, this placed me at a great disadvantage. During the previous year, 1994, less than 1% percent of African Americans in need of a marrow donor found a match. This severe shortage of minority donors exposed me to gaps in the health care system. As a result, I began recruiting and educating others about marrow donation. I conducted numerous marrow drives and added thousands of potential donors to the marrow registry. Nevertheless, in 2019, still only 23% of African Americans find lifesaving donors compared with 80% of European Americans.
Similarly to my experiences with bone marrow donors, I saw that African Americans were also underrepresented in clinical trials. In August 1998, I entered the phase 1 clinical trial of an experimental therapy that was taking a new approach to cancer treatment. Unlike chemotherapy, which kills both healthy and malignant cells, this novel targeted therapy only affected the mutation that causes the cancer cells to grow while sparing healthy cells. Further, this drug that eventually came to be known as imatinib mesylate (Gleevec), was taken as a pill rather than intravenously. After taking this new medicine, I eventually achieved a complete response. Now 24 years after my diagnosis, I am the world’s longest living Gleevec survivor. Although I was a pioneer in CML clinical trials and a true success story, the sad fact remains that even 20 years later, less than 5% of clinical trial participants are African Americans.
I have witnessed the barriers that African Americans often experience in seeking out lifesaving clinical trials. Many may live too far from the clinical trial site to afford the travel expenses. Some may be in a health care network in which their physicians do not routinely recommend patients for enrollment in clinical trials. Furthermore, many patients are not given enough education to process the various myths and misconceptions concerning clinical trials in order to advocate for their health.
My passion to educate and inform patients eventually intersected with The Leukemia & Lymphoma Society (LLS), which also happened to have been one of the original early funders of the research that led to the development of Gleevec. African Americans are twice as likely to be diagnosed with the blood cancer myeloma, but are less likely to receive state of the art treatments such as I did. In addition, they are more likely to experience delays in much needed marrow and stem cell transplants that can lead to better outcomes. The LLS is committed to closing this gap.
In 2017, LLS launched a program called Myeloma Link, which connects African American communities to information, expert care, and support. Myeloma Link began as a pilot program in Washington, DC, and Atlanta, Georgia, in March 2017. In the fall of 2018, the program expanded to Philadelphia, Baltimore, Detroit, St. Louis, Houston, and Oakland, with anticipated expansion to additional cities in summer 2019. I have been blessed to participate in this program as the national outreach coordinator.
Awareness of cancer symptoms is very important. Many in the African American community have never heard of myeloma. Others are not aware of the various resources offered by LLS, such as help with travel pay, co-pay, insurance premiums, and support groups.
I know first-hand about the complexities involved with searching for the right clinical trial. Fortunately, LLS has a Clinical Trial Support Center, in which patients with cancer can connect with oncology nurses who will work 1-on-1 with them to conduct clinical trial searches. The center provides a viable list of eligible trials that the patient can take back to their physician.
It is important for patients to use their whole health care team, including physicians, nurses, social workers, and oncology pharmacists as well. Many patients are not familiar with the importance of oncology pharmacists, who are instrumental to patients’ understanding of the complex and confusing health system. For example, many current drugs, such as Gleevec, are taken orally and some patients do not follow their regimens correctly. An oncology pharmacist stresses the importance of medication compliance and taking oral medications on schedule. They also can help the patient manage adverse effects and interactions in order to improve a patient’s daily quality of life.
In summary, there are many ways that various members of your health care team can work together to close the gap. Awareness of the different health care players and the various cancer organizations, such as Myeloma Link, and their resources can make a difference in the outcomes for patients. This applies to all patients with cancer, as services often overlap across communities. All members of a health care team can work together to close the gap of racial disparity. It starts with all of you.
At the Hematology/Oncology Pharmacy Association Annual Conference, Melvin D. Mann, MBA, MEd, community outreach coordinator for Myeloma-Link of LLS, spoke with Specialty Pharmacy Times® on the issue of racial disparity in CML. Watch a clip of the interview below.