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Lupus Patient Advocacy

May is Lupus Awareness Month. On Speaking of Health With Dr. B, I have been concentrating on issues important to the diagnosis and treatment of Systemic Lupus Erythematosus (SLE). Patient advocacy is an important component to finding a cure for this illness. Patients experience the illness and can tell doctors about the components of the illness that bother them the most. These factors are ones that need to be addressed. Patient advocacy groups give patients a way of letting others know about their concerns.

The Lupus Foundation of America (LFA) was founded in 1977 and has become the largest lupus patient advocacy organization. Sandra Raymond is the President of the LFA, and has been a vocal spokesperson for lupus patients. For example, she spoke with Dr. Francis Collins, Head of the National Institutes of Health (NIH) and Dr. Bill Chin, Executive Vice President of Science and Regulatory Affairs of the Pharmaceutical Research and Manufacturers of America (PhRMA) about the Accelerating Medicine Partnership (AMP) on the BioCentury This Week program in March 2014. Ms. Raymond explained why the AMP is an important program to advance therapy for lupus patients. The Partnership includes government, industry, and patient advocacy groups. The goal is to jump-start clinical trial programs to quicken the development and approval process for new lupus drugs. Only one new drug has been approved for the treatment of lupus in the last 50 years. New therapies are essential in improving the lives of lupus patients.

Through the work of the LFA, about 20 million dollars in research grants have been awarded to over 100 medical institutions in support of lupus research. Through its advocacy work, the LFA has generated 12 million dollars in additional funding from the Department of Defense and the Centers for Disease Control. The LFA has also been part of the partnership between the Department of Health and Human Services Office of Women’s and Minority Health that has funded the Lupus Initiative that was the subject of one of my radio podcasts this month. The LFA under the leadership of Sandra Raymond is doing the important patient advocacy work that will result in better lives for patients who suffer with SLE.

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