Clinical trial volunteers help advance lupus research

Kathie Ruffato, clinical trial volunteer

Lupus is a chronic, autoimmune disease that can damage any part of the body including skin, joints and organs. It is a complex and unpredictable disease with symptoms that may range in severity from one day to the next. It can even be fatal. There are an estimated 1.5 million Americans living with lupus, and every day these individuals must deal with their own immune system not recognizing the difference between "foreign invaders" like the flu and healthy tissue. The resulting health effects can include heart attacks, strokes, seizures, and organ failure.

No one knows what causes lupus and, at this time, there is no cure. In 2011, the U.S. Food and Drug Administration approved the first therapy ever developed specifically for lupus, and the first drug of any kind approved for the treatment of this disease in more than 50 years. But one treatment for lupus will never be enough because no two cases of lupus are alike. Lupus requires an arsenal of treatments.

Without clinical research, medication choices are limited. That’s where volunteers in clinical trials, like Kathie Ruffatto, come into the picture.

"When I found out that I had the option to enroll in a clinical trial, the opportunity for me was huge," says Ruffatto. "I thought, whether or not the treatment works, my participation will benefit not only me, but everyone else out there who has lupus."

Diagnosed with lupus at the age of 14, Kathie has always tried not to let lupus dictate who she is or what she can accomplish, even though frequent hospitalizations for unexplained infections meant she must sometimes take a different route to accomplish her goals.

For people like Ruffatto, clinical trials offer the opportunity to play a more active role in their own health care, gain access to new research treatments, and help others by contributing to medical research.

"Clinical trials are studies that evaluate the safety and effectiveness of new drugs or treatment strategies," explains Dr. S. Sam Lim, associate professor of medicine at Emory University School of Medicine, and chief of service for rheumatology at Grady Memorial Hospital in Atlanta, Georgia. "Participating in research is essential for furthering the understanding of lupus and other diseases and, ultimately, leads to more effective treatments.

"However, all clinical trials have risks and benefits, and participation in a clinical trial is not for everyone," adds Lim. "People considering joining a clinical trial should speak with their health care provider and discuss the options they are considering."

"In a way, it wasn’t a hard decision for me because I trusted my doctor. My doctor understood me as a person, and it is so important for your doctor to understand who you are, not just what your lupus is." Ruffatto says.

Ruffatto also advises people with lupus to research clinical trials through trusted organizations like the Lupus Foundation of America.

"You have to weigh the pros and cons in your situation to see if it is the right fit for you because every case of lupus is so different," she adds.

To educate yourself more on lupus, visit www.lupus.org. To find out more about clinical trial opportunities, visit the Lupus Foundation of America’s Center for Clinical Trials Education (CCTE) at www.lupus.org/clinicaltrials.