Our research, education and advocacy programs in 2013 contributed advances that are helping to solve the cruel mystery of lupus.
The Kelly Report on Health Disparities in America
By Sandra C. Raymond, President and CEO of the Lupus Foundation of America
Lupus among racial and ethnic minority groups is a dramatic and significant public health problem that cries out for national attention and resources. That’s why the Lupus Foundation of America jumped at the opportunity to contribute to a new Congressional report examining health disparities in America and what can be done to improve treatments and outcomes in minority communities.
The report, 2015 Kelly Report on Health Disparities in America (PDF), was released on September 18th by U.S. Rep. Robin Kelly and the Congressional Black Caucus (CBC) Health Braintrust during the CBC Foundation’s Annual Legislative Conference in Washington, DC. I had the opportunity to participate in a panel conversation during the conference about where we as a country are headed in the struggle to achieve health equity for all Americans.
Recent studies indicate that lupus affects 1 in 537 young African American women and that these women have higher mortality rates – up to three times the incidence of mortality than that of Caucasians. In recent years, there has been an erosion of funding at the NIH and other vital federal agencies. Without adequate and robust funding for biomedical research, progress into discovering, developing, and delivering new medications to people with lupus will continue to be delayed. The result will have a devastating impact on all people with lupus, especially members of the African American community who are at greatest risk for the disease.
Additionally, we must conduct research to truly understand specific physical, social, emotional, and other challenges that can be overwhelming for medically underserved, minority populations. We must ensure patients and physicians are educated about lupus to help reduce the time to disease diagnosis, that patients are starting the correct treatments faster in order to limit organ damage and that patients are connected with valuable and culturally appropriate support and services to help manage living with this cruel and mysterious disease.
The significance of lupus in the African American community can no longer be ignored, and it is clear there is much work to do to improve health equity among those who suffer from the disease.
Off-label drugs for the treatment of lupus symptoms represents the standard of care for people with lupus, but current regulations make it difficult for doctors and manufacturers to communicate. Read Sandra C. Raymond's remarks now.