Myeloma is the second most common blood cancer in the U.S. and the most prevalent among Black and African Americans. It is also the hematologic malignancy with the greatest racial disparity in incidence and prevalence; Blacks are not only at twice the risk of developing myeloma when compared to white Americans and other ethnic groups, they are also more likely to be diagnosed at a younger age.
Further, other patient populations with myeloma have greater improvement in survival rates than Blacks, and research suggest that time from diagnosis to initiation of therapy is significantly greater for this population. They also receive significantly less autologous stem cell transplantation and are significantly less likely to enter a clinical trial than White Americans, further perpetuating disparities in quality of care.
In response to these inequities, The Leukemia & Lymphoma Society (LLS launched a national outreach program in 2017 called “Myeloma Link,” to educate Black and African Americans about myeloma and other blood cancers, help patients access optimal care and navigate the treatment landscape more effectively.
Specifically, Myeloma Link partners with trusted institutions within Black and African American communities to:
- Raise awareness about the disparities in myeloma incidence and treatment, signs and symptoms of the disease, and the resources that LLS offers;
- Provide information and resources that will equip Black and African American myeloma patients with the knowledge and tools needed to seek novel, state of the art treatments, including clinical trials, in a timely manner.
Myeloma Link achieves its goals through activities carried out by LLS Patient and Community Outreach field staff and trained volunteers, including:
- Conducting virtual myeloma education programs for patients and caregivers.
- Conducting virtual community awareness education programs in collaboration with trusted community-based organizations, and senior centers, libraries, barbershops.
- Church outreach through various virtual activities including health sermons during services in Black churches.
- Presenting virtual “lunch and learn” myeloma education programs for primary care providers, including physician and nurses, at community health centers and Federally Qualified Health Centers (FQHCs).
- Connecting patients and caregivers from these communities with master’s level oncology professionals at LLS’ Information Resource Center to answer disease and treatment questions, connect patients to optimal care, and provide additional support.
The program is presently active in 13 cities across the country: Atlanta, Baltimore, Birmingham, Cleveland, Dallas, Detroit, Houston, New York City, Oakland, Philadelphia, Raleigh/Durham, St. Louis and Washington DC.
Since its inception in 2017, the program has reached over 23,000 individuals through more than 200 programs in Black communities throughout the country.
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