African American Initiative
Multiple myeloma only accounts for 2% of all cancers BUT is the most common blood cancer in African Americans1.
Furthermore, multiple myeloma is the second most common hematologic cancer in the U.S. and the most common in African Americans.
The following graph shows All New Cases of Myeloma in the U.S. in 2017:
African Americans have more than twice the incidence rate of multiple myeloma compared to white Americans2.
Also, African Americans account for 20% of patients currently with myeloma.
By 2034, it is estimated that African Americans will make up roughly 24% of the newly diagnosed multiple myeloma population3.
Multiple myeloma is one of the malignancies with the greatest disparity in incidence and prevalence between African Americans and white Americans4.
WHAT THIS MEANS TO YOU:
Multiple myeloma is a very important disease in the African American community. It is much more common than most people know despite being a relatively rare disease. It will become even more common in the years to come!
Myeloma Is Different in African Americans
African Americans have an average earlier age of onset of myeloma5.
The pre-myeloma condition MGUS is more common in African Americans. Studies in Africa have also shown this increased incidence6.
MGUS is twice as common in African Americans than white Americans:
Some evidence suggests the biology of myeloma may be different in African Americans when compared to white Americans7.
Genetic studies are ongoing to better understand how myeloma may be different in African Americans.
WHAT THIS MEANS TO YOU:
Multiple myeloma patients have a non-active form of the disease (MGUS = monoclonal gammopathy of undetermined significance) for many years before it becomes active. Because this is twice as common in the African American population, it is very important to diagnose the disease early on. As we find better ways to treat the disease and possibly even prevent it from becoming active, it is imperative for the African American community to be aware of the onset of the disease.
Survival has dramatically improved in myeloma over the last decade – more than almost any other cancer. Recent treatments have led to a doubling of overall survival of patients with this disease. Longer survival is a result of autologous stem cell transplants, newer drugs, and using these drugs in combination.
Unfortunately, the same degree of improvement in survival has not been seen in the African American population8
Based on a study of over 35,000 people, white Americans have gained 1.3 years of life compared to only 0.8 years of life for African Americans.
The following study compares the improved survival outcomes for white race individuals, black race individuals, and those of Hispanic descent. It shows that African American patients have not seen the same degree of survival improvement.
WHAT THIS MEANS TO YOU:
Multiple myeloma is a cancer that has made amazing progress in the last 10 years with much-improved survival. However, this improvement has not been fully seen in the African American community. Because this is very concerning, we want to find ways to overcome this disparity.
Treatment Disparity in African Americans with Myeloma
The lack of relative improvement in survival in African Americans with myeloma is complex but is likely due to multiple factors, including reduced use of autologous stem cell transplant, access to novel therapies, and enrollment in clinical trials.
Rates of the use of stem cell transplant are rising in the U.S. for myeloma patients, but sadly not at the same rate for African American patients9.
Indeed, African Americans are 37% less likely to undergo stem cell transplant even though this is the standard of care for eligible patients10.
Socioeconomic status is associated with overall survival in myeloma patients. In this study of 3 groups of people based on socioeconomic status, this highest group an overall survival average of 38 months, while the lower groups were only 32 and 29 months respectively. African Americans were more likely to fall into the two lower groups than whites (78% vs 65%)11.
Furthermore, African Americans are less likely to be treated with newer drugs and combinations of drugs that are so important in myeloma12.
WHAT THIS MEANS TO YOU:
The great improvements we have seen in multiple myeloma has been due to the use of stem cell transplants as well as new drugs. These treatments have both not been as accessible to the African American population. The IMF is committed to helping bridge that gap to find ways to ensure African American patients can gain access to stem cell transplants and new drugs.
Clinical Trials in Myeloma for African Americans
Despite the fact that African Americans comprise 20% of the population of myeloma patients, they only account for 6% of patients in clinical trials13.
Importantly, when African American patients are in clinical trials, they fare as well as white patients, underscoring the importance of finding ways to increase enrollment in clinical trials14.
The factors for this disparity in the African American population are both healthcare provider issues and patient-related issues15:
Healthcare Provider Factors
- Unwillingness to refer patients for trials
- Fear that clinical trials create a financial or administrative burden to the practice
- Lack of clinical trial availability
- Few minority investigators
- Lack of knowledge
- Cultural differences
- Mistrust of the medical or research systems
- Perceived risk for harm
- Lack of education about clinical trials
- Time commitment
- Family issues
WHAT THIS MEANS TO YOU:
Clinical trials are a very important way that new drugs and new approaches are offered to patients. They also provide options to patients who have exhausted all standard approaches. More and more clinical trials are now ongoing in multiple myeloma and are available across the country. Making these accessible to the African American community must be a priority and is, indeed, to the IMF.
The IMF is deeply committed to the whole myeloma community and has launched an initiative to overcome many of these disparities in the African American myeloma population.
In keeping with the four pillars of the IMF, the initiative will involve activities in Support, Education, Advocacy, and Research.
The IMF is uniquely poised to do this in light of the resources we provide across the world. Find a Support Group near you.
Furthermore, the IMF has a 30-year history of partnering with others to improve the lives of patients with myeloma as we seek the cure. We work with patients, caregivers, providers, myeloma experts, communities, industry, and all others involved in the lives of myeloma patients.
With equal access, African American patients have superior survival compared to white patients with multiple myeloma: a VA study. Published in the journal Blood in June 2019.
Cancer Facts & Figures for African Americans in 2019-2021. Published by the American Cancer Society.
Comparable survival of African-Americans and Caucasian patients with multiple myeloma: A hospital-based study including 117,926 patients. Published in the Journal of Clinical Oncology in May 2019.
Racial and insurance disparities in multiple myeloma management in a referral center. Published in the Journal of Clinical Oncology in May 2019.
Superior Survival in African American Patients Undergoing Autologous Stem Cell Transplant For Multiple Myeloma. Published in Clinical Lymphoma, Myeloma, and Leukemia in May 2019
Cancer statistics for African Americans, 2019. Published in CA: A Cancer Journal for Clinicians in February 2019.
Molecular underpinnings of clinical disparity patterns in African American vs. Caucasian American multiple myeloma patients. Published in the journal Blood in February 2019.
Differences in genomic abnormalities among African individuals with monoclonal gammopathies using calculated ancestry. Publishsed in journal Blood in October 2018.
Multiple Myeloma Awareness and African American Disparities. Published by the National Cancer Institute in April 2017.
Celgene has published this brochure: Standing in the Gaap: For African Americans Living with Multiple Myeloma.
Baker A, et al. Blood. 2013;12(16):3147-315
- American Cancer Society. Cancer Facts and Figures for African Americans 2019-2021. Atlanta:American Cancer Society, 2019. Available at: www.cancer.org. Accessed April 19, 2019.
- Rosenberg PS, Barker KA, Anderson WF, et al. Future distribution of multiple myeloma in the United States by sex, age, and race/ethnicity. Blood. 2015;125:410-412.
- Greenberg AJ, et al. Blood Cancer J. 2015;4:e271
- Morgan GJ et al Leukemia 2014;28:518-524
- Landgren O et al, Leukemia 2014; 28:1537-1542; Landgren O, et al. Mayo Clin Proc. 2007;82(12):1468-1473
- Baker A, et al. Blood. 2013;121(16):3147-3152
- Ailawadhi S, Aldoss IT, Yang D, et al. Outcome disparities in multiple myeloma: a SEER-based comparative analysis of ethnic subgroups. Br J Haematol. 2012;158:91-98
- Schriber JR, et al. Cancer. 2017;123:3141-3149
- Fiala MA, Wildes TM Cancer 2019
- Fiala MA, et al. Leuk Lymphoma. 2015;8:1-7
- NecampJ, et al. Blood. 2016;128:4502. 2. Chehab S, et al. Cancer. 2018;124(8):4358-4365
- US Census Bureau Quick Facts. www.census.gov accessed April 22, 2019. Duma N, et al. The Oncologist. 2018;23:1-3
- Ailawadhi S, Jacobus S, Sexton R, et al. Blood Cancer J. 2018;8:67-75
- Iammarino NK Cancer Facts; Banda DR Am Soc Clin Onc Education Book 2012: 153-157; Ford JG Cancer 2008;112:228-242