Jun. 24, 2013

Lupus Activists on Capitol Hill Urge Congress To Expand Research

On Tuesday, June 25, 250 lupus activists from across the nation will take to Capitol Hill to make their voices heard and urge Congress to support expanding the medical research effort on lupus and access to treatments during the Lupus Foundation of America’s National Lupus Advocacy Summit. Thousands more will call, email, or send letters to their Members of Congress. Lupus activists will also present more than 30,000 petitions from individuals calling upon Congress to expand the medical research effort on lupus.

Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Research to better understand the disease and discover effective treatments is greatly underfunded relative to its scope and devastation. Without sufficient funding from public and private sources, research efforts into the causes of lupus and the discovery of new treatments will be delayed, and the search for a cure will be seriously impaired.

“We urge everyone to contact their Representatives and join us in the call for increased funding for lupus research and increased access to medications,” said Sandra C. Raymond, President and CEO of the Lupus Foundation of America. “We must work together to elevate lupus on the nation’s health care agenda and ensure that lupus receives the attention and resources it deserves.”

As part of the day’s events, a luncheon will be held to honor Congressman David McKinley (R-WV-1) where he will be presented with the LFA Distinguished Leadership Award. Congressman McKinley will be recognized for his sponsorship of the Patients’ Access to Treatment Act, which limits cost sharing for specialty drug tier medications, enabling patient access to treatments, reduce disability, and contain health care costs.

“Since I was diagnosed with lupus, I have had a colon resection, gall bladder removal, a stroke, and total hysterectomy. This is just the physical impact of lupus, there is also a tremendous financial and emotional burden on my family and all families affected by lupus that often goes unseen,” said lupus activist Erin Kotecki Vest from Los Angeles, CA. “I want Congress and the public to understand how serious and debilitating this disease is, and the urgent need for more research and better treatments, so other families don’t have to go through what mine has experienced.”

The Foundation’s 45-foot purple bus with interactive experiences that demonstrate what it’s like to live with lupus will also be on Capitol Hill for Members, their staff, and the public to tour. The bus, part of the Foundation’s Help Us Solve the Cruel Mystery™ National Tour, will make several stops throughout the DistrictJune 24-26. Washington, DC is the latest city of its National tour. The purple bus has made visited major cities across the country, including Los Angeles, San Francisco, Dallas, and New York, over the past several months.

In previous years, Congress has responded to advocates’ call for an expanded federal effort to address lupus by: opening new sources of federal agency funding for biomedical research on lupus; providing millions of dollars for the first-ever comprehensive national epidemiological study on lupus; and funding the first-ever national multimedia public service advertising campaign on lupus sponsored by the U.S. Department of Health and Human Services Office on Women’s Health and the Ad Council; and stimulating a national health care provider education initiative to improve lupus diagnosis, treatment, and management among minorities through the U.S. Department of Health and Human Services’ Office of Minority Health.

The LFA nationwide grassroots network has grown considerably in the last decade to include tens of thousands of lupus activists, supporters, and volunteers from every state.


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