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The Lupus Alliance of America LI/Q Affiliate sends patient advocates to Washington D.C. to urge Congress to increase the NIH budget, as well as to continue to support lupus research and education |
Washington D.C. – On March 5th, Board Members, staff and patient advocates from The Lupus Alliance of America LI/Q Affiliate joined other members of the LRI National Coalition from all over the country for Lupus Advocacy Day in Washington D.C. Among these advocates were Long Island residents, Nancy Beder and JoAnn Quinn of Bellmore, Violet Regan of Westbury, Mary Geraghty of Northport, Bonnie and David Mamiye of Great Neck, J.C., Carole-Anne and Luke Bonner of West Babylon, and John Vander-Putten, Frank, Christine and Olivia Donato all of Massapequa Park.
First time advocate, Luke Bonner 13, whose 19 year old sister was diagnosed with lupus when she was 12 said, “I have grown up watching my sister suffering in pain, and unable to do things I could do. I am glad I got to help her by letting our government know that there are too many people suffering with lupus that need our help.”
To help find a cure for the over 2 Million Americans who have lupus, the Alliance advocates made up of people with lupus, siblings, spouses and parents, told their stories about living with lupus and urged Congress to seek a Fiscal Year 2009 progress report from the NIH on implementation of its five-year, trans-Institute research plan on lupus. The update will help keep the public informed about the progress and hopefully success the 5 Year NIH Lupus Research Plan has achieved.
Christine Donato, a long time lupus advocate, who was diagnosed at age 15, and is also an honoree at this years Lupus Gala Brunch on April 27, spoke about the experience, “Going to Washington, DC was an empowering experience. I felt that putting a real face on this disease helped members of Congress better understand Lupus than just reading facts on a piece of paper ever could”.
The advocates also asked Congress to provide the HHS Office of Minority Health with support in the Fiscal Year 2009 Labor/HHS Appropriations Bill for new lupus education efforts for health professionals. The $5 million dollars requested will initiate education efforts aimed at teaching health providers how to diagnose lupus earlier and start therapy sooner, which could eventually shorten the length most people with lupus suffer silently, waiting for a definitive diagnosis and then finally treatment. Most people with lupus suffer an average of 5 years, before they finally find a doctor who can diagnose them.
The last item on the advocate’s agenda was to urge Congress to begin to restore the nation’s medical research enterprise and support a 6.6% or $1.9 billion increase in funding for the NIH fiscal year 2009.
“Without this increase important research into hundreds of diseases, not just lupus would be stalled, this is something everyone in the country has a stake in, not just the 2 Million Americans with lupus“, Executive Director JoAnn Quinn stated.
Among the members of Congress the Alliance met with were Congressman Peter King, Congressman Steve Israel and Congresswoman Carolyn McCarthy, all of whom have been staunch supporters for the fight against lupus. Advocates also met with the health aides for Congressman Joseph Crowley, Gary Ackerman, Gregory Meeks and Congresswoman Nydia Velazquez.
If you have lupus or know someone who does please call the Lupus Alliance of LI/Q for help at 1-800-850-9000 or visit their website at www.lupusliqueens.org.
