The Financial Burden of Autoimmune Disease

The American Autoimmune Related Diseases Association and the American Coalition of Patients Groups recently released a white paper which explores the fiscal impact of ADs on patients and U.S. healthcare spending - The Cost Burden of Autoimmune Disease: The Latest Front in the War on Healthcare Spending. Bolding and parenthetical statements mine. 

The summary states:

Autoimmune disease as a category affects 50 million Americans. It is one of the top ten causes of death in women under the age of 651, is the second highest cause of chronic illness, and is the top cause of morbidity in women in the United States. Additionally, autoimmune diseases have been reported to be on the rise in the U.S. and around the world, making this poorly understood category of disease a public health crisis at levels comparable to heart disease and cancer. Because of a severe lack of awareness amongst the general public and medical practitioners and unequal allocation of research funding and focus at the National Institutes of Health (NIH), plus a lack of coordinated care and standardized diagnostic tests, the associated cost of autoimmune diseases has become a significant portion of the rising cost of healthcare in the U.S. Addressing the pressing concerns surrounding autoimmune diseases should be a major priority of the United States Congress as a means of reducing healthcare spending while ensuring improved public health.

Of particular interest was data showing the annual indirect and direct cost of Sjögren’s syndrome and rheumatoid arthritis (RA) against a control group:

This data was published by the Sjögren’s Syndrome Foundation and was produced by two independent UK studies16. The studies found that indirect costs totaled $21,369 per patient per year. These included time lost from current work, inability to work at all, or to work full-time, as well as costs associated with the necessity to hire outside help within the home to assist with tasks no longer possible due to disease progression, such as housework and yard work. With four million patients suffering from Sjögren’s syndrome in the U.S. today, this adds billions more to the already staggering financial burden faced by patients, your constituents, in the U.S. today.

According to the paper's authors, much of the blame of the staggering cost of autoimmune disease is placed squarely on the current health care provider system:

Innate problems exist for autoimmune patients regarding getting a diagnosis and onset of treatment which add unnecessarily to the cost of having these illnesses. According to an AARDA study, on average patients spend upwards of four years seeking an effective diagnosis. Visits to more than four physicians are typically needed; and because of poor physician training and education in this category, the AARDA study found that 46 percent of patients were told that they are constant complainers or too concerned with their health. The cost ramification of this is that the illness continues to progress throughout this process, extending the time to which patients begin to obtain proper treatment and care for their illness. Disease progression, unchecked with treatment, has major consequences, such as organ damage and physical disability that often lead to earnings losses and financial distress due to high out-of-pocket costs. Ultimately, after becoming unable to work and support themselves and their families, patients are forced to apply and obtain disability payments.

The paper went on to address ways in which our current health care system could be adapted to ensure better care for AI patients and in doing so, reduce the cost burden of these diseases to both patients and the current health care system providers:

• Streamlining the diagnostic process. 
• Coordinated care through community-based triage center. I was intrigued by their suggestion to create a new physician specialty - the autoimmunologist. This new specialist would serve as the head of a multi-disciplinary team of physicians within autoimmune triage centers, providing not only more cost-effective care but also increasing the quality of care for these patients. 
• Focus on research funding: knowledge limits waste. "Ultimately, better autoimmune disease costs and epidemiological studies are necessary to improve assessment of the prevalence of all 100+ autoimmune diseases so that the U.S. can allocate, in fairness, resources in funds for research and drug development, focus on research and medical training, and provide accurate information for developing public health policy."
• Increasing awareness. "....adding to a severe awareness gap are physicians. Many are poorly trained in this area and typically do not ask about a family history of autoimmune diseases on patient intake forms. It has been scientifically proven that these diseases are genetically linked; therefore, family history plays a major role. If the patient doesn’t know to tell the physician of a family history of autoimmune disease and the physician doesn’t know to ask, patients are destined for years of misdiagnosis or no diagnosis; and billions of dollars are spent that could have been saved with an increase in awareness."

The authors conclude:

Autoimmune diseases will continue to be a mounting public health concern in the U.S. and around the world for the foreseeable future. The cost associated with these diseases, while difficult to pin down accurately for all 100+ diseases, has clearly been illustrated to be a major component in the healthcare spending picture, adding perhaps hundreds of billions of dollars to healthcare spending through cost to individual patients and Medicare/Medicaid, as well as loss of productivity in the U.S. workforce. It is imperative that autoimmune diseases become a public health priority that is recognized throughout NIH institutes as well as amongst the congressional representatives who must represent the pressing needs of this growing constituency of Americans who live with autoimmune diseases.

Amen! Take the time to read this excellent white paper.