Autoimmunity Has Reached Epidemic Levels. We Need Urgent Action to Address It

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At some point in your life, you could have about a one in five chance of developing an autoimmune disease. The odds are greater if you are a woman, you have a genetic predisposition to autoimmunity, or you are exposed to certain pollutants. These diseases include more than 100 lifelong and costly illnesses such as type 1 diabetes, rheumatoid arthritis, lupus and multiple sclerosis. They are often difficult to diagnose and currently impossible to cure.

The effects of autoimmune disease are devastating. As a person’s own immune system attacks their body instead of microbes or cancerous cells, they can experience chronic fatigue, chronic pain, drug dependency, depression and social isolation. These symptoms annihilate mental health, wreck promising careers, destroy lives and, often, ruin families. For too many, these illnesses result in early death. As a patient advocate and a physician researcher, we have seen people search for decades to identify the source of their illness, and continue to suffer after receiving a diagnosis that leaves them with few effective treatments.

Autoimmunity is an epidemic. To keep it from destroying so many lives, we urgently need to understand these diseases better and find more effective ways to prevent, diagnose, treat and cure them.

In the U.S., we don’t know exactly how many people have autoimmune diseases and the total numbers depend on who you ask; there is no national registry or systematic method of collecting that data, and our current totals are extrapolated from other countries, such as Denmark and Italy, which do have registries but do not reflect the diversity of our population. Some estimate there are at least eight million people in the U.S. with psoriasis, four million with Sjogren’s disease, and three million with inflammatory bowel disease, which includes Crohn’s disease and ulcerative colitis. Most autoimmune diseases are being diagnosed in increasing numbers ranging from 3 to 12 percent annually across the globe.

We also are finding more people with autoantibodies—immune system proteins that, instead of ignoring our cells and organs, treat them as invaders. Autoantibodies are markers for the presence, or the possible development, of autoimmune diseases.

Our recent research indicates that one type of autoantibody called antinuclear antibodies increased nearly 50 percent in the U.S. in less than 30 years. This is not simply because we are screening more people. Even more concerning, teenagers in the study experienced a nearly 300 percent increase between 1988 and 2012. Many of these children might not ever achieve their full potential, because battling chronic illness will alter their lives.

Research suggests these increases in autoimmune diseases are related to remarkable changes in our environment and lifestyles, including alterations in diet and upsurges in obesity, sleep deprivation, stress, air pollution, exposure to toxic chemicals, and infections. We do not know yet if these factors cause autoimmunity, but often, where you find autoimmune diseases, you find these changes as well.

Autoimmune diseases are also among the most expensive diseases to treat. In 2001, the latest year data are available, the National Institutes of Allergy and Infectious Diseases looked at 20 million people who had been diagnosed with 29 autoimmune diseases and estimated that the cost of treating them was more than $168 billion, based on 2023 dollars. This is about what the U.S. spent last year on the Departments of Homeland Security and the Interior combined.

We have an opportunity to begin to address these problems. Last year, the National Academies of Sciences, Engineering, and Medicine reported on the status of autoimmune disease research, at Congress’ behest. Based on the report, Congress issued a directive for $10 million to establish an Office of Autoimmune Disease Research within the Office of Research on Women’s Health at the National Institutes of Health (NIH). This is the bare minimum, and an office within an office within the NIH is fine, but just like the National Cancer Institute is dedicated to cancer research, the scope of autoimmunity demands the same. A single institute dedicated to autoimmune diseases would harmonize and focus research and avoid duplications of effort.

But first, for effective research, we need all people who may have an autoimmune disease, health care providers and researchers to use an internationally agreed-upon set of definitions and concepts. At present, no consensus exists regarding the makeup or boundaries of the terms autoimmune, autoinflammatory, immune-mediated or immunodeficient diseases. These terms are broad and used differently by different groups, making them challenging to measure, track and efficiently study.

Second, to define the full extent of the autoimmune problem, we need to know how many people are affected, where they are located, and how these numbers and locations are changing over time. We should create national reporting systems for autoimmune diseases, similar to the registry that exists for cancer.

Third, and most importantly, we need an inclusive, overarching strategy to address this epidemic. Rather than having autoimmune research in one central institute with one central mission, strategy and framework, scientists studying these diseases are scattered in 13 institutes and centers throughout the NIH. These groups need to coordinate their efforts to make the discoveries that will address these diseases as a class.

People with autoimmunity, their families, advocacy organizations, health care providers, researchers, funding agencies and pharmaceutical companies need to organize internationally to address the global autoimmune epidemic by supporting registries, strategies and funding mechanisms for improved diagnosis, treatment and prevention of autoimmune diseases.

The global autoimmune epidemic has received too little attention and resources for too long. What information we have indicates the cost of managing this epidemic is increasing dramatically. The price of inaction will be profound, both in terms of human suffering and health care expenditures. It’s still possible to shape a future where autoimmune diseases decrease or even become 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.

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