The Leukemia & Lymphoma Society (LLS) and the National Black Church Initiative (NBCI) are closing March, Myeloma Awareness Month, with the start of a joint church-based initiative to raise awareness of the health disparities experienced by African-Americans living with multiple myeloma.
The project, “Myeloma Link: Connecting African American Communities to Information, Expert Care, and Support,” is the first such collaboration between the NBCI and a major health advocacy organization.
Black Americans have roughly twice the incidence of multiple myeloma as white Americans, with recent studies finding that blacks are also less likely to receive the latest myeloma treatments or combination therapies, and more likely to encounter delays in receiving treatment, including transplants, the groups noted.
The Myeloma Link will open as an 18-month pilot program at select churches in metro Washington, D.C., and Atlanta.
Its objectives include increasing myeloma knowledge and awareness, improving access to new therapies for African-American patients, and enhancing their quality of life by providing the information and resources needed to more effectively engage with available treatment options. The initiative will also encourage building a new sustainable support infrastructure for patients and caregivers.
“The Leukemia & Lymphoma Society is committed to increasing access to education and treatment for multiple myeloma in the African American community, and breaking down barriers to clinical trials,” Louis J. DeGennaro, president and CEO, said in a media release. “We look forward to an ongoing collaboration with the National Black Church Initiative to have a positive impact, particularly in low-income communities, through this unique church-based approach.”
Specific program goals include:
- Creation of local Myeloma Ambassadors networks (patients or caregivers) equipped to provide support and information;
- Churches scheduling “Myeloma Sundays” with a “health sermon” by healthcare professionals, and distributing Health Alert fact sheets via church bulletins;
- Provision of healthcare provider-led myeloma education programs;
- Development of church-based myeloma support groups;
- Creation of a national and local resources directory;
- Opening a way to connect patients and caregivers with oncology professionals at LLS, which spends approximately $180 million in patient support and services annually, including a team of advisers who can answer disease and treatment questions and offer additional support.
LLS and NBCI will use what they learn from this pilot rollout to then introduce the program at churches nationwide.
LLS has given about $70 million to support myeloma research since 2009, spanning projects focused on better understanding the multiple myeloma disease process, on helping to improve therapies already in use, and supporting the development of new treatment approaches.
“There have been many new therapies approved by the FDA for multiple myeloma this past year alone, and they are changing the treatment paradigm for patients diagnosed with the disease, an incurable blood cancer that begins in the bone marrow,” DeGennaro said. “We want to ensure that all patients benefit from these advances.”
“We are deeply honored to join with The Leukemia & Lymphoma Society to address this critical area of health regarding multiple myeloma and we look forward to a very rich relationship,” said the Rev. Anthony Evans, president of the National Black Church Initiative. “It is important for African Americans to be aware of the resources available to help them with a multiple myeloma diagnosis.
“Our congregation members can become better-informed patients and caregivers by calling or emailing LLS Information Specialists, masters-level oncology professionals who work one-on-one to help blood cancer patients navigate the best route from diagnosis through treatment, clinical trials and survivorship,” Evans added.
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