Following on the heels of the annual ACR scientific assembly (and my interview with Dr. Wallace), I reached out to Sandra Raymond, President and Chief Executive Officer of the Lupus Foundation of America, to discuss lupus from the patient perspective. Sandra’s rhinovirus infection (she had a cold) did not stop her from completing an excellent interview with me.
Listen to the podcast here, or read a summary of the interview below.
Dr. Val: Tell me about the Lupus Foundation of America (LFA).
Raymond: The Lupus Foundation of America is the nation’s leading organization dedicated to finding the causes and cure for lupus. We also provide services, support, and hope to all people living with lupus. We have a national research program called “Bringing Down The Barriers” and we fund grants to researchers in academic institutions across the country. We are also very active on Capitol Hill, lobbying for research and educational efforts. In a few months we’ll be launching a public awareness campaign to help Americans understand this disease.
Dr. Val: Of which key accomplishment of the LFA are you most proud?
Raymond: LFA has been able to expand medical research efforts for lupus. This not only gets us closer to finding a cure, but it offers hope to those who are living with the disease.
Dr. Val: In your view, what do patients with lupus need the most?
Raymond: They need safe, effective, and well-tolerated treatments. November the 20th, 2008, marks 50 years without a new, approved treatment for lupus. The treatments that patients are currently taking can be very harsh. They sometimes cause side effects that are worse than lupus itself! We must step up our research efforts to discover safe and effective treatments to bring this disease under control and provide patients with a better quality of life.
The good news is that there are quite a few pioneering biotech companies who are investing money in finding a cure for lupus. So there may be new drugs on the horizon.
Autoimmune diseases affect 23 million Americans. Lupus accounts for at least 1 million of those, but if we can figure out what causes lupus, there are implications for all disorders of the immune system. Read more »