Due to the recent congressional lobbying by the Lupus Alliance of LI/Q, the National Institutes of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has posted “The Future Directions of Lupus” on their website for public comment.

Bellmore, NY – Not many of us want to imagine what it would feel like to be diagnosed with a life-threatening disease, and even fewer of us would want to imagine trying to live our daily lives with a debilitating disease; but no one could possibly imagine what it is like to be diagnosed with a chronic illness and live your life knowing that not only is there no cure, but not one single medicine designed specifically for your condition.

For over 2 million Americans who have lupus, this is not something they need to imagine, it is something they live. Lupus is a mutli-system disease that causes everything from rashes and memory loss to complete organ failure. There has not been a new drug specifically approved for lupus by the FDA in over 40 years. That translates into two generations of Americans suffering with a disease that can attack every organ and system in their body, and yet have no medication targeted specifically to attack the disease. Diseases that combined, affect less people than lupus have many drugs made specifically for the condition, medications that not only target the disease but also medications that are less toxic to the system than those now prescribed to people with lupus.

For that reason The Lupus Alliance of America LI/Q Affiliate joined forces recently with other lupus agencies around the Nation to lobby congress to take action. Over two days, the lupus advocates attended meetings on the new clinical trials taking place for lupus that featured several top pharmaceutical companies that have thrown their hat into the lupus ring. The Alliance advocates also lobbied the house and the senate for more dollars for lupus research, clinical trials and a definitive plan on how lupus should be studied, what is needed to move forward in research, and how the research should be done. Among the many members of Congress the Alliance met with were local Representatives Peter King, Carolyn McCarthy and Steve Israel all of whom have been staunch supporters for the fight against lupus.

The lobbying paid off and on May 23rd, the National Institutes of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) posted a letter on their website asking for the public’s input on “The Future Directions of Lupus Research,” a planning document aimed at advancing understanding of lupus to help diagnose, treat, and, ultimately, prevent the disease. The document will be posted online at www.niams.gov, or you can visit the Alliance’s website at www.lupusliqueens.org which has a direct link. The document will be on the NIAMS site until June 22, and online comments are requested from anyone who has an interest in lupus.

Many of the most prominent doctors working with lupus today feel that the next ten years will finally show significant changes in lupus diagnostic tools, medications, and even more importantly, a cure. “The Future Directions of Lupus” document is a large first step in achieving that goal. The Lupus Alliance of LI/Q is proud to have assisted in bringing this important document to light, and will continue to fight at the forefront of the battle against lupus. If you have lupus or know someone who does please visit the websites above and leave your comments about the NIAMS Future of Lupus document. If you have questions or need help please call the Alliance at 1-800-850-9000. The time to speak up for lupus is now, let your voice be heard and be a part of the cure!