Guest Post: LFA's National Lupus Advocacy Summit
By Sara J. Chang, Government Relations and Public Policy Manager, Lupus Foundation of America.
’We are lupus activists, and we’re here to tell our stories and make our voices heard throughout Capitol Hill!’ That was the empowerment felt during the Lupus Foundation of America’s biennial National Lupus Advocacy Summit held June 24-25, 2013. It is always an energizing and rewarding event for our lupus activists and 2013 was no exception. We had meetings with 176 Congressional offices, involving 220 people representing 30 states. Our online activists also came out in force, generating 3,503 emails and phone calls to Congress during the two-day event!
We took to Capitol Hill to urge Congress to support funding the National Institutes of Health (NIH) at $32 billion and to pass H.R. 460, the Patients’ Access to Treatments Act (PATA), to ensure access to treatments for lupus and other chronic conditions. Lupus activists reinforced their request when they presented more than 30,000 petition signatures collected from individuals calling upon Congress to expand the medical research effort on lupus. (You can still sign the online petition at www.cruelmystery.org.)
The Lupus Foundation of America called upon its vast network of lupus activists from almost every Congressional district in the nation. Our activists have diverse backgrounds and represent the full range of impact that lupus has on individuals and families. And while they come from all walks of life, they share one common goal — to solve the cruel mystery of lupus.
Lupus is a cruel mystery because it is hidden from view, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Every 30 minutes, another person in the United States is diagnosed with lupus. An estimated 1.5 million Americans are living every day with the physical and emotional impact of lupus, while the social and economic burdens of lupus often extend to the entire family.
Research to better understand lupus and discover new, effective and more tolerable treatments for the disease is greatly underfunded relative to the scope and devastation of lupus. Without sufficient funding for research into the causes of lupus, the discovery of new treatments will be delayed, and the search for a cure will be seriously impaired.
The impact of sequestration and deficit reduction remain a primary concern for our efforts that seek to increase lupus research funding and maintain existing lupus programs. That is why the Foundation will never give up its fight to secure more funds for the NIH and for lupus research. Congress must provide increased funding to the NIH to greatly expand medical research on lupus, so people with the disease no longer will suffer its devastating and disabling effects.
To see more photos from our National Lupus Advocacy Summit, visit www.facebook.com/lupusfoundationofamerica.