Epidemiology
At some point in your life, you may have a one in five chance of developing an autoimmune disease. The odds increase if you are a woman, have a genetic predisposition to autoimmunity, or are exposed to certain pollutants. These diseases include over 100 persistent and costly conditions such as type 1 diabetes, rheumatoid arthritis, lupus, and multiple sclerosis. They are often difficult to diagnose and currently impossible to cure.
Effects of Autoimmune Disease
The impacts of autoimmunity can be devastating. When a person’s immune system attacks their body instead of microbes or cancer cells, they can suffer from chronic fatigue, chronic pain, reliance on medications, depression, and social isolation. These symptoms devastate mental health, destroy promising careers, ruin lives, and often tear families apart. For many, these diseases lead to early death. As an advocate for patients and a researcher in medicine, we have seen people search for decades to pinpoint the cause of their disease, still suffering after receiving a diagnosis that leaves them with few effective treatments.
Epidemiology
Autoimmunity is an epidemic. To prevent it from destroying the lives of many, we urgently need to better understand these diseases and find more effective ways to prevent, diagnose, treat, and manage them.
Statistics
In the United States, we do not know exactly how many people suffer from autoimmune diseases, and the overall numbers depend on who you ask; there is no national registry or systematic way to collect this data, and our current figures are based on estimates from other countries like Denmark and Italy, which do not reflect our population’s diversity. Some estimate that at least eight million people in the United States suffer from psoriasis, four million suffer from Sjögren’s disease, and three million suffer from inflammatory bowel diseases, which include Crohn’s disease and ulcerative colitis. The diagnosis of most autoimmune diseases is increasing at rates ranging from 3 to 12 percent annually worldwide.
Potential Causes
We are also finding more people with autoantibodies — immune proteins that instead of ignoring our cells and organs, treat them as invaders. Autoantibodies are markers for the presence or potential development of autoimmune diseases.
Environmental and Lifestyle Changes
Recent research suggests that the rise in autoimmune diseases is linked to notable changes in our environment and lifestyle, including changes in diet, increased obesity, lack of sleep, stress, air pollution, exposure to toxic chemicals, and infections. We do not yet know if these factors cause autoimmunity, but often, where you find autoimmune diseases, you also find these changes.
High Costs
Autoimmune diseases are also among the most expensive to treat. In 2001, the National Institute of Allergy and Infectious Diseases looked at 20 million people diagnosed with 29 autoimmune diseases and estimated that their treatment costs exceeded $168 billion, based on 2023 dollars. This is equivalent to what the United States spent last year on the combined budgets of the Departments of Homeland Security and Interior.
Need for Urgent Action
We have an opportunity to begin addressing these issues. Last year, the National Academies of Sciences, Engineering, and Medicine issued a report on the state of autoimmune disease research, at the request of Congress. Based on the report, Congress issued a directive to allocate $10 million to establish an autoimmune disease research office within the Office of Research on Women’s Health at the National Institutes of Health (NIH). This is the bare minimum, and the office within the office within the NIH is good, but just like the National Cancer Institute that addresses cancer research, the scope of autoimmunity requires the same. There should be a single institute dedicated to autoimmune diseases that will unify and focus research and avoid duplicative efforts.
Steps
Proposed
But first, for effective research, we need all individuals who may suffer from autoimmunity, healthcare providers, and researchers to use a globally agreed-upon set of definitions and concepts. Currently, there is no consensus on the composition or boundaries of the terms autoimmune diseases or autoinflammatory diseases or immune-mediated diseases or immunological diseases. These terms are broad and used differently by different groups, making them difficult to measure, track, and study efficiently.
Second, to fully assess the scope of the autoimmune issue, we need to know how many people are affected, where they are located, and how these numbers and locations change over time. We must establish national reporting systems for autoimmune diseases, similar to the existing cancer registry.
Third, and most importantly, we need a comprehensive and holistic strategy to address this epidemic. Instead of having autoimmune research in one central institute with a single mission and framework, scientists studying these diseases are spread across 13 institutes and centers throughout the NIH. These groups need to coordinate their efforts to make discoveries that will address these diseases as a cohesive group.
Individuals suffering from autoimmune disorders, their families, advocacy organizations, healthcare providers, researchers, funding agencies, and pharmaceutical companies must organize globally to tackle the worldwide epidemic of autoimmunity by supporting registries, strategies, and funding mechanisms to improve diagnosis, treatment, and prevention of autoimmune diseases.
Conclusion
The global epidemic of autoimmunity has received little attention and resources for far too long. Information we have indicates that the cost of managing this epidemic is growing substantially. The price of inaction on a human level and healthcare expenses will be profound. We can still shape a future where autoimmune disease is less prevalent or becomes a thing of the past. But to do so, we must act now urgently and decisively.
This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.
Copyright and Permissions: Olivia Casi is the Executive Director of Programs at the Autoimmunity Association and has been involved in patient advocacy for over two decades. Frederick Miller is the former Deputy Chief of the Clinical Research Branch and Head of the Environmental Autoimmunity Group at the National Institute of Environmental Health Sciences, National Institutes of Health (retired), and continues his research efforts to understand the causes and best treatments and prevention of autoimmune diseases. He received his Ph.D. from Case Western Reserve University.
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