Supplement: Families in Crisis

Families in Crisis Stanley M. Finger The impact of an autoimmune disease is felt by more than just the patient. One of the myths about autoimmune disease is that it has little socioeconomic impact. Nothing could be further from the truth. Autoimmune diseases as a whole afflict many people. In 2005, the National Institutes of Health estimated that as many as 24 million Americans have one or more autoimmune disease. This lies between the number of people with cancer (about 10 million) and cardiovascular diseases (about 31 million). Roughly one million new cases of autoimmune disease are diagnosed every year in the United States. In addition to those demographics, these diseases inflict high medical costs on patients. In 2001, NIH estimated the costs for autoimmune-disease treatments at over $100 billion per year, which is comparable to cancer ($74 billion) and cardiovascular diseases (about $100 billion). The costs of treating autoimmune diseases will surely grow. Some of today's best autoimmune treatments cost as much as $16,000 a year; multiplying that cost by the NIH prevalence estimate of 24 million indicates that direct treatment costs will soon be on the order of $400 billion annually in the United States. So, any way you look at the numbers, autoimmune disease is a major burden on our healthcare system. I know personally just how hard these diseases hit. At the age of 27, I started taking corticosteroids for immune thrombocytopenic purpura (ITP), an autoimmune blood disease. These drugs can induce terrible side effects. I went from an easygoing guy to someone who blew up at the slightest problem, and the change occurred almost overnight. The situation improved after I was weaned off the medication, but I never fully recovered my relaxed personality. Although prevalence and treatment costs of autoimmune diseases are comparable to other major disease groups, NIH research funding for this disease category is only about one-fifth of that received by others. My exposure to autoimmune diseases, though, continued. When she was 19, my oldest daughter was diagnosed with autoimmune hepatitis. As a family, we faced great stress and financial impacts. First, my wife quit work to care for our daughter, until she was strong enough to return to college six months later. Moreover, insurance covered only part of my daughter's visits to specialists and the cost of a newly released immunosuppressant, azothioprene, used to lower her required corticosteroid dosage. We were fortunately able to absorb these financial impacts, but they can easily overwhelm a family. The financial strain can grow even worse, because autoimmune diseases can run in families, like they do in ours. My younger daughter was diagnosed with juvenile diabetes when she was six years old. She immediately had to start taking 3-5 blood tests and at least two insulin injections every day. Juvenile diabetes is not a cheap disease. Insurance companies have differing policies on coverage for insulin, blood-test supplies, and syringes. In the mid-1980s, a few years after my daughter was diagnosed with diabetes, our insurer decided to limit coverage for all medications and diabetic supplies to $600 per year. This covered only about 20% of her diabetes supplies, leaving nothing for other medications. In addition to my own family, I see many others struggling with autoimmune diseases through my work as chair of the board of directors for the American Autoimmune Related Diseases Association. AARDA funds research on autoimmune diseases, runs a national public-awareness campaign, and sponsors conferences for physicians. Visitors to the AARDA Web site (www.aarda.org) are encouraged to take a short survey about their autoimmune diseases. In addition, AARDA members talk to many people and their families affected with autoimmune diseases around the country. Based on this extensive, but admittedly unscientific, data we believe autoimmune-disease prevalence is actually about one in five Americans, which is twice to three times the current estimate. Moreover, we believe that the healthcare costs related to autoimmunity are significantly greater than those associated with other major diseases. Autoimmune diseases result in many socioeconomic consequences: loss of productivity, direct-treatment costs, care costs, and the human tragedy of millions of people suffering through decades of chronic disability. The huge burden of autoimmune disease will continue to grow until we recognize that it is a major-disease category and mount a coordinated attack, which would incorporate enhanced levels of integrated research cutting across all the autoimmune diseases, physician training, and public awareness. Stanley Finger (right) with former US Health and Human Services Director, Tommy Thompson. Right now, funding for integrated autoimmune disease research must be increased dramatically. Although prevalence and treatment costs of autoimmune diseases are comparable to other major disease groups, NIH research funding for this disease category is only about one-fifth of that received by others, such as cancer and heart disease. Moreover, most of this funding is for research on individual autoimmune diseases. Clearly more research funds are justified but, equally important, they must be applied to synergistic, integrated research on the entire family of autoimmune diseases. We can also find better ways to train physicians about autoimmunity. Medical schools do not have courses devoted to autoimmune disease: Doctors learn about individual autoimmune diseases in different courses dealing with various parts of the body. In other words, physician training focuses on individual autoimmune diseases but not on the autoimmune-disease family. In addition, primary-care physicians need to be educated to recognize that intermittent symptoms occurring around the body could possibly be due to an autoimmune disease. A physician must recognize the possibility of an autoimmune disease before trying to diagnose it. Several medical specialties deal with different autoimmune diseases, generally based on the parts of the body attacked. For example, endocrinologists treat juvenile diabetes, gastroenterologists treat autoimmune hepatitis, and hematologists treat immune thrombocytopenic purpura. A specialty in autoimmunology (analogous to oncology for cancer) is needed to deal effectively with patients and families afflicted with multiple autoimmune diseases, and the powerful and potentially dangerous immunosuppressants used to treat them. Finally, the public needs to be educated on the family of autoimmune diseases: what they are, their symptoms, and the importance of quickly getting an accurate diagnosis and starting treatment. These recommendations will help to dramatically lower the human suffering, healthcare costs, and other socioeconomic impacts of autoimmune disease. Stanley M. Finger, PhD, is chair of the board of directors for the American Autoimmune Related Diseases Association, and a representative to the National Institutes of Health's Autoimmune Disease Coordinating Committee.

Supplement: Families in Crisis

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