Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with and a challenge to treat. There is only one drug designed specifically to treat lupus and most other medications used to treat lupus are prescribed off-label and often have significant side effects.
In order to combat this disease and its devastating impact, we must accelerate the pace of lupus research. In 2014, we spearheaded efforts with the Congressional Lupus Caucus to request an update to a 2007 National Institutes of Health (NIH) lupus report. After an 18-month process, the result is the recently-released Action Plan for Lupus Research. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) issued this report to call attention to areas of scientific inquiry that may lead to more effective treatments and, eventually, cures.
The current approach to lupus research is not broad nor comprehensive and we are not getting answers fast enough while people with lupus continue to suffer the debilitating consequences. The stakes are high – lupus affects approximately 1.5 million people and can be disabling and life-threatening. The need to accelerate lupus research could not be more urgent. This report provides direction to transform and accelerate our research efforts.
Lupus ravages different parts of the body, causing inflammation and tissue damage to virtually any organ system, including skin, joints, heart, lungs, kidney and brain. People with lupus can have significantly lower quality of life compared with people suffering from other chronic diseases. Lupus is serious and relentless – our approach to combating the disease and its cruel impact must be equally serious and relentless.
We will never find the cures without first uncovering the causes of lupus, understanding its progression, and identifying smarter and more efficient ways for getting treatments to people with lupus faster. This Action Plan takes us a significant step forward by identifying promising areas of research to help understand the disease better and identify targets for advancing drug development.
In the Action Plan, NIAMS poses key questions for further research: Is lupus one disease or many; how can new and emerging research tools and technologies advance our understanding of disease mechanisms; how can we facilitate the development of new and emerging treatment paradigms; and how can various sectors work together to more effectively conduct and support lupus research and research training?
Now, we must answer these questions and answer the call for curative strategies. The past two decades of research have produced promising new discoveries and, as such, we have the opportunity to use these findings for identifying potential genetic, epigenetic, environmental, and infectious causes of lupus and, ultimately, developing novel approaches for lupus treatment and prevention.
We cannot do this without more funding for the NIH to allow researchers to continue this important and life-saving work. The basic research field has been decimated due to poor funding, and many researchers have pursued other areas of research. The impact on public health is enormous and the burden of this disease must be alleviated to prevent further pain and suffering.
Research holds the key to solving this cruel mystery and finding new treatments with fewer side effects. We believe in the life-saving promise of research on lupus. We support this Action Plan and the vision that it sets forth in accelerating research efforts to find new treatments and, eventually, the cures that will end this cruel mystery.
Sandra C. Raymond is President and CEO of the Lupus Foundation of America, the only national force devoted to solving the mystery of lupus. To urge Congress to increase federal funding for the NIH, click here.