This guest post was written by Jordana Lenon for our Share Your Story series. Jordana is the public information and outreach specialist for the Wisconsin National Primate Research Center and the Stem Cell and Regenerative Medicine Center at the University of Wisconsin-Madison.
The NIH funds millions of dollars of research into fighting autoimmune diseases, such as rheumatoid arthritis, celiac disease, psoriasis, Crohn’s disease, systemic lupus erythematosus and many others. Auto-immune diseases affect 50 million Americans, according to the American Autoimmune Related Diseases Association (AARDA).
I was diagnosed with systemic lupus erythematosus in 2011. It has taken my doctors and me five years to learn how to effectively manage this complicated disease. Lupus can harm many organs, tissues and cells throughout the body and used to kill more people than not within a few years of diagnosis a mere 20-30 years ago.
I am happy that I am living a fairly normal life now and can do almost anything I did before I got sick. Others with lupus are not so fortunate. They are unable to work, or unable to work up to their formal level of productivity due to anemia, nausea, unremitting pain, respiratory complications, crushing fatigue, cognitive dysfunction and other symptoms, not to mention added side-effects from some of the medicines. One of the most serious complications of lupus is lupus nephritis, which has no symptoms until it reaches the critical stage, but is among the most life threatening.
Fortunately, many people with lupus nephritis, like me, have some incredible doctors to thank for the survival and healing of our kidneys, as well as for our overall recovery from our joint pain, anemia and other symptoms. We’re grateful to the doctors who manage our treatments directly, of course, but we also need to thank some surgeon-researchers and their colleagues who learned how to save kidneys, hearts, livers and lives thanks to critical studies they did with animals in the 1990s.
Mycophenolate mofetil, or MMF, a mainstay immunosuppressant that I will likely have to take for the rest of my life, has far fewer and far less life-threatening side effects than prednisone (the main “treatment” that in the long run could not save many lupus and organ transplant patients decades ago). In fact, my neighbor down the street, Dr. Hans Sollinger, Department of Surgery, UW-Madison School of Medicine and Public Health, authored “From mice to man: the preclinical history of mycophenolate mofetil” in 1996, published in Clinical Transplantation. The paper describes how MMF advanced from lab dish studies to mice, rats, dogs, monkeys and people in the early 1990s.
Not only do I take MMF every day, but I also take a repurposed antimalarial medicine, called hydroxychloroquine, that similarly reduces auto-immune induced inflammation and damage in lupus patients. I also take a blood pressure lowering drug at a very low dose to add an extra layer of protection against my lupus, even though I’ve always had normal to low blood pressure. Taking a variety of relatively safer medications that work better together than one very dangerous, high-dose drug (prednisone) has made the difference between a life I can expect to enjoy for a long time versus one that could very well have been cut short by now, if not in a few years.
Animals being used in lupus research today include mostly mice, and also some rats and rhesus monkeys. A fair amount of veterinary research with dogs also occurs, as they suffer from arthritis and lupus as well. Human lupus research discoveries inform new directions for canine studies and treatments, and vice-versa. Stem cell research is also underway to better understand and treat lupus.
Patient advocacy groups representing people with systemic lupus erythematosus and rheumatoid arthritis have successfully raised awareness and research funding for these and other autoimmune diseases. I participated in one of many Walk for Lupus events across the country in 2014, raising $1,000 from my family and friends. Coordinated by the Lupus Foundation of America (LFA), the walks resulted in hundreds of thousands of dollars raised privately. Representatives from Lupus Foundation of America and the Rheumatology Research Foundation then met with Congress to request more funding. On Sept. 24, 2014, the NIH announced $6 million in first-year funding to 11 research groups across the United States to establish the Accelerating Medicines Partnership in Rheumatoid Arthritis and Lupus (AMP RA/Lupus) Network, to develop new drugs and diagnostics for these and other auto immune diseases.
The walks, meetings and awareness-raising continued. On June 10, 2016, the U.S. Senate Appropriations Committee passed the Fiscal Year 2017 appropriations bill, which includes critical research and education funding for lupus. The bill now moves to the full Senate for consideration.
Research on lupus treatments have come a long way, but there is still much work to be done. Many people with lupus and other autoimmune diseases still need safer and more effective treatments, and we are only going to get them if basic, translational, and clinical research is well-funded. Research on one autoimmune disease helps inform research on others. So we – 50 million strong – are in this together, as are our loved ones, the clinical, research and animal care teams supporting us, and future generations who won’t have to suffer from the pain, weakness and life-threatening complications of these frightening diseases.
Jordana Lenon is the public information and outreach specialist for both the Wisconsin National Primate Research Center and the Stem Cell and Regenerative Medicine Center at the University of Wisconsin-Madison. Animal research – in part on rhesus macaques at her own workplace – saved her life in 2011, when months of troubling yet unexplained symptoms became severe enough to land her in the hospital. A diagnosis of systemic lupus erythematosus soon followed and effective, life-saving treatment ensued.