How do we count the cost of autoimmune disease?

How do we count the cost of autoimmune disease?

June 2011

A question to explore:  How do we count the cost of autoimmune disease? The National Institutes of Health, in its “Progress in Autoimmune Disease Research” Report, states: “The burden of a human disease should be counted not only in terms of dollars spent on health care for people directly affected, but as the total cost to society.”

The associated cost of autoimmune disease has become a significant portion of the rising cost of US health care This is because of a severe lack of awareness among the general public and medical practitioners, unequal allocation of research funding and focus at the National Institutes of Health (NIH), and a lack of coordinated care and standardized diagnostic tests.

What are some numbers?
Autoimmune disease is one of the top ten causes of death in women under the age of 65, the second highest cause of chronic illness, and the top cause of morbidity in women in the United States In compiling statistics on the cost burden of autoimmune disease, AARDA estimates that autoimmune disease as a category affects 50 million Americans. This number is based not only on NIH epidemiology studies but also on individual patient group data through members of the National Coalition of Autoimmune Patient Groups (NCAPG).

While the National Institutes of Health estimates that up to 23.5 million Americans have an autoimmune disease, that number reflects epidemiology studies pertaining to only 24 of the 100+ autoimmune diseases. A significant lack of epidemiological studies of many of the 100+ autoimmune diseases greatly increases the difficulty of developing accurate numbers for prevalence and cost for all autoimmune diseases.

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. For example, studies show that the incidence of multiple sclerosis in Italy has risen from fewer than one million cases in 1979 to just over four million in 1999. In Norway and Sweden, the incidence of diabetes in children under ten has risen from eight million in 1930 to more than 20 million in 2000. In Finland, the incidence of type 1 diabetes has more than doubled in the past 30 years. In the United States, in Minnesota alone, the incidence of celiac disease has tripled in the past decade.

Why the increase?
Researchers believe that this increase of autoimmune incidence around the world is due to a combination of genetic predisposition and environmental factors. However, it is clear that too little is known regarding what elements in the environment today are triggering these record increases. With 50 million Americans currently living with an autoimmune disease, and the prevalence rising at alarming rates, it is imperative that the effect on U.S. health care spending, as well as the financial burden on individual constituents faced with these diseases, become a major priority in the ongoing discussion regarding the direction of health care in the U.S.

What is the cost of chronic illness?
In 2001, NIH National Institutes of Allergy and Infectious Diseases (NIAID) Director Dr. Anthony Fauci estimated that annual autoimmune disease treatment costs were greater than $100 billion. That likely is a vast understatement of the true costs of autoimmune disease as the annual costs of only seven of the 100+ known autoimmune diseases–Crohn’s disease, ulcerative colitis, systemic lupus erythematosus (SLE), multiple sclerosis (MS), rheumatoid arthritis (RA), psoriasis, and scleroderma–are estimated, through epidemiological studies, to total $51.8 to $70.6 billion annually.

According to a 2008 international survey looking at cost trends among chronically ill patients in seven countries, chronically ill patients in the U.S., as compared with those in other countries, are more likely to go without proper care due to the burden of cost even though it is known that early diagnosis and onset of treatment is key in minimizing life-altering complications that can occur as a result of autoimmune disease. These include, for example, such problems as damaged internal organs, loss of physical mobility, and possible disfigurement, as well as an increased likelihood of death.

However, according to the aforementioned international survey, 54 percent of U.S. chronically ill patients did not get recommended care, fill prescriptions, or see a physician when sick because of the high cost of care. As a whole, according to the survey, 41 percent of U.S. patients spent more than $1,000 in the previous year on out-of-pocket medical costs.

Because of the chronic nature of most autoimmune diseases, patients often miss extended periods of employment; and they are faced with thousands of dollars in medical expenses they no longer can afford. In the case of rheumatoid arthritis (RA), only one of the 100+ autoimmune diseases, for example, it’s been found that approximately 50 percent of RA patients become unable to work within ten years of disease onset.

What are total costs to patients and society?
Due to a lack of studies investigating the varying costs of autoimmune diseases as a category, there is no current ability to calculate the total cost of all 100+ diseases although studies reflecting the cost to the patient and society have been done by individual patient advocacy and research organizations who focus on individual autoimmune diseases.

According to the publication “The Burden of Musculoskeletal Diseases,” RA patients accounted for 18,000, or 2 percent, of the 922,100 non-federal, short-stay hospitalizations for arthritis and other rheumatic conditions in 2004. Autoimmune diseases such as RA, and others, have a substantial impact on healthcare spending in the U.S. as they greatly affect the United States’ ability to sustain a skilled work force.

And how about disability and Medicare?
Innate problems exist for autoimmune patients regarding diagnosis and onset of treatment. These add unnecessarily to the cost of having these illnesses. According to an AARDA study, patients spend an average of four years seeking an effective diagnosis, with visits to more than four physicians being needed.

The cost ramification is that the illness continues to progress, extending the time in which patients begin to obtain proper treatment. Disease progression, unchecked with treatment, has major consequences, such as organ damage and physical disability. After becoming unable to work and support themselves and their families, patients are forced to apply for and obtain disability payments.

The cost associated with autoimmune disease has been illustrated clearly to be a major component in the healthcare spending picture. It adds perhaps hundreds of billions of dollars to healthcare spending through costs to individual patients and Medicare/Medicaid, as well as loss of productivity in the U.S. work force.

In conclusion…It is imperative that autoimmune diseases become a public health priority recognized throughout NIH institutes as well as among the congressional representatives who must represent the pressing needs of this growing constituency of Americans living with autoimmune diseases.

The solutions are wide-ranging. However, the true immediate need is for Americans to become aware of the vastness of this issue as a public health concern and for its overall financial burden to be understood by Congress so as to motivate our representatives to address these solutions–today.

In fact, addressing the pressing concerns surrounding autoimmune disease(s) should be a major priority of the United States Congress as a means of reducing health care spending while ensuring improved public health.

Source:  Adapted from “The Cost Burden of Autoimmune Disease: the Latest Front in the War on Healthcare Spending,” American Autoimmune Related Diseases Association and National Coalition of Autoimmune Patient Groups, 2011; AARDA INFOCUS, Vol. 19, No. 2, June 2011


Vasculitis Foundation

The Vasculitis Foundation is the international organization for patients with vasculitis, their families, friends and the health care professionals who care for them.