Lupus is a poorly understood disease, with no known cause, cure, or easy pattern of diagnosis. We do know that lupus is an autoimmune disease, meaning that the body’s immune defenses against infection turn on itself and begin attacking healthy tissues and organs.
The symptoms associated with lupus are many and varied, depending on which organs are being attacked at which time. These symptoms often come and go, as well. They can be relatively benign, such as rashes or joint and muscle pains, but can also be debilitating and potentially life-threatening, including serious cardiovascular problems and kidney inflammation leading to kidney failure.
Because of these constantly changing symptoms and their varying severity, diagnosing lupus can be a real challenge. Its symptoms mimic those of other diseases, earning it the name “the great imitator” in the medical community. A lupus diagnosis usually requires months, possibly years, of careful analysis and tests by several doctors.
Women are disproportionately affected by lupus. Of the estimated 1.5 million diagnosed lupus cases, 90 percent are women. Most of these occur in women of childbearing age, between the ages of 15 and 44. According to the Lupus Foundation of America, minority women are two to three times likelier to be diagnosed with lupus, and generally have more severe symptoms when diagnosed. Children can also be affected by lupus and have more kidney involvement than adults and more severe disease.
Costs associated with lupus are high, exceeding $30 billion annually according to the Lupus Foundation of America. Individuals, employers, and the healthcare system as a whole all bear substantial financial burdens because of this disease. Only a few drugs have been approved by the Food and Drug Administration to specifically treat lupus. The most recent one, a new biological therapy, was approved in March 2011. Prior to this, no new drugs were approved for lupus treatment in the past 50 years.
Legislators can play an influential role in the battle against lupus, ranging from awareness campaigns to physician education initiatives and funding research. Supporting public health surveillance initiatives can also provide states with the information they need to better understand how lupus affects their populations. This toolkit provides more information about lupus, its costs, and sample legislation to provide a springboard for additional action.
Below are the links to the toolkit:
If you have any questions regarding the Toolkit, please contact Brenna Kehew, Policy Associate, at 202.333.0825 x211 or via email at bkehew@womeningovernment.org.
