Lupus: The silent war

By Congresswoman Eddie Bernice Johnson

Each day approximately 1.5 million Americans engage in a battle with their own bodies due to Lupus. Often times this internal conflict is unknown to their families and friends. Even though the disease can strike men and women of all ages, 90 percent of its victims are female. What is even more alarming is that it affects minority women two to three times as much as white women.

A recent survey revealed that nearly three-fourths of all Americans between the ages of 18 and 34 have never heard of this disease, and ironically those who fall in that age bracket are at the highest risk. We must build awareness about this chronic condition and simultaneously work to increase funding for research to improve the diagnosis of this disease that disproportionally affects minorities and women in the prime of their lives.

The disease is Lupus– an unpredictable and misunderstood disease in which the immune system is out of balance, causing damage to any organ system in the body. Lupus can affect any or all organs in the body including the skin, lungs, heart, joints, kidneys, and brain. Common symptoms include joint pain, skin rashes, overwhelming fatigue and fevers that last for days or weeks.

Currently, there is no procedure that determines whether or not a patient has lupus, and the disease often imitates other illnesses making it challenging to diagnose. On average, it takes a person with lupus three to four years and three doctors to receive an accurate diagnosis. Researchers have yet to discover the cause of Lupus and while it does appear in certain families, no gene or gene group has been proven to cause this debilitating disease.

Treatment for lupus can be very expensive because of its multi-faceted nature. Annually, lupus costs our nation about $31.4 billion. The annual cost for treatment for an individual with lupus is an estimated $20,000. The cost to treat an individual with lupus nephritis, kidney inflammation caused by lupus, could be as high as $62,000 per year.

Ultimately, extensive research is needed to better understand this disease and to discover effective treatments. But without sufficient funding, research into the cause of lupus and the discovery of new treatments will be delayed. Currently, there is only one FDA approved drug to treat Lupus, but due to the vastness of the disease one drug cannot treat every case. I am astutely aware of our current economic conditions, but we cannot afford to make drastic cuts to funding for agencies like the National Institutes of Health that conduct valuable research leading to cures for diseases like Lupus.

I have recently joined the Congressional Lupus Caucus, established so that members of Congress can help increase awareness of Lupus and advance vital research. It is my hope that my colleagues and I can work together to find solutions to help facilitate scientific efforts to find a cure for this debilitating disease.