Leukemia & Lymphoma Society Launches ‘Myeloma Link’ in Collaboration With National Black Church Initiative

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The Leukemia & Lymphoma Society (LLS) together with the National Black Church Initiative (NBCI) announced the launch of a church-based initiative addressing striking health-care disparities among African Americans with multiple myeloma. Black Americans have twice the incidence of multiple myeloma as white Americans, and recent studies show that black Americans are significantly less likely to receive the newest treatments or combination therapies and are more likely to experience treatment delays, including transplant delays.

Tools and Resources

The multifaceted program, called Myeloma Link: Connecting African American Communities to Information, Expert Care, and Support, will improve access to novel therapies and quality of life among African Americans with myeloma by providing tools and resources to navigate the treatment landscape more effectively and cope with the disease. It is the first collaboration between the NBCI and a major health advocacy organization to heighten awareness of myeloma. The goal is to increase knowledge about multiple myeloma and available treatments; provide critical information and resources; and encourage patients and caregivers to use a new, sustainable support infrastructure.

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.
— Louis J. DeGennaro, PhD

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“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,” commented Louis J. DeGennaro, PhD, LLS President and Chief Executive Officer. “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.”

Pilot Program

The 18-month pilot program to be rolled out in key churches across metro Washington, DC, and Atlanta will do the following:

  • Create local networks of Myeloma Ambassadors (patients or caregivers) to provide support and information
  • Feature Myeloma Sundays, consisting of a “health sermon” by respected health-care professionals, and Health Alert fact sheets placed in church bulletins
  • Conduct additional in-depth, health-care provider–led education programs
  • Develop church-based support groups
  • Create a directory of national and local resources
  • Connect patients and caregivers with master’s level oncology professionals at LLS—a free service for patients with blood cancer and caregivers providing answers to their disease and treatment questions as well as offering additional support

LLS and NBCI will use learnings from this pilot to bring the program to scale nationally in rural, suburban, and urban areas throughout the country.

In addition, LLS is supporting a large portfolio of research seeking to understand better the mechanisms of multiple myeloma, help approved therapies work better, and support novel approaches to treatment.

“There have been many new therapies approved by the [U.S. Food and Drug Administration] 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. We want to ensure that all patients benefit from these advances,” added Dr. DeGennaro.

Rev. Anthony Evans, President of the NBCI, noted: “We are deeply honored to join with the Leukemia & Lymphoma Society to address this critical area of health regarding multiple myeloma and look forward to a very rich relationship.”

“It is important for African Americans to be aware of the resources available to help them with a multiple myeloma diagnosis,” continued Rev. Evans. “Our congregation members can become better-informed patients and caregivers by calling or e-mailing 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.” ■