While multiple sclerosis affects all races and ethnicities, minority populations may bear an unequal burden from the disease.
African Americans may not only have a higher risk of developing MS, but it may be more aggressive, with more severe effects and faster progression. Hispanic Americans may have an earlier onset of disease and may be more prone to lesions located in the spinal cord and optic nerve.
Genetic, environmental, and social factors may all contribute to the development of MS and the treatment received for this disease. Minorities in the U.S. have higher rates of MS compared with people living in their ancestral communities. Disparities in use and receipt of health services, cultural beliefs, and distrust of the medical profession may also contribute to worse outcomes.
Minority populations are severely underrepresented in scientific research. In fact, recent studies show that African Americans make up more than 13 percent of the U.S. population but only 5 percent of clinical trial participants and Hispanics, who make up 16 percent of the population account for only 1 percent of research participants. Compare that to the non-Hispanic, Caucasian population which makes up 67 percent of the U.S. population but 83 percent of research participants.
While we are learning that MS disease progression can vary in minority groups – and that differences in cultural norms and health system use impact it as well—without the participation of these populations in research studies, it is impossible to understand how the disease manifests and which treatments work best in all people with MS.
The MS Minority Research Engagement Partnership Network wants to change that…