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Diagnosing the Care Coordination Challenges for People with Autoimmune Diseases

JULY 20, 2016

VladdBy Virginia Ladd, President and Executive Director of the American Autoimmune Related Diseases Association, Inc. (AARDA)

With so many autoimmune diseases making up the autoimmune disorder spectrum, the one thing they all have in common is complexity.

Autoimmune diseases cause low- or over-activity of a person’s immune system. Low activity can decrease the body’s ability to fight away invaders and stay healthy, while over activity can cause the body to attack and damage its own tissue. Researchers have identified 80-100 different autoimmune diseases, with some of the common disorders including rheumatoid arthritis, fibromyalgia, and lupus.

As President and Executive Director of AARDA, I work with people across the country who live with these conditions. While their medical situations vary, the value of coordinated care cuts across the board as one solution that benefits everyone. For people in Medicare, care coordination is even more valuable, as they may have had their autoimmune disease for many years or have multiple chronic conditions on top of their autoimmune disease.

Over 50 million Americans live with autoimmune diseases, yet they still do not have a dedicated specialty field or a medical center specializing in treating patients like them with autoimmune diseases. Similarly, academic and health research is generally disease-specific and limited in scope, failing to assess the full autoimmune landscape.

Instead, patients with even just one autoimmune disease often receive care from a primary care physician and a variety of specialists focused on the symptoms stemming from their autoimmune related diseases. Unfortunately, specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area. Seeing so many providers also presents issues for care coordination, as specialists often don’t share information and may not understand the entire picture of a patient’s health.

By their nature, autoimmune diseases affect different parts of the body, so there is frequently a problem with accurately diagnosing conditions. Specialists often want to focus on the area they’re most familiar with and since there is no “autoimmune-ologist”, the provider may not order the necessary tests to properly identify autoimmune conditions. Initial symptoms are often intermittent and unspecific until the disease becomes acute. People in Medicare also often ignore symptoms of autoimmune diseases because they attribute them to getting older and part of a normal aging process. However, sore joints can actually be rheumatoid arthritis, while fatigue may be an early sign of a much more serious condition.

Coordinated care is very important to making sure providers know all the symptoms that a patient is living with so they can diagnose issues that cut across specialties. It’s even more important for people in Medicare with multiple autoimmune diseases or other chronic conditions.

People living with autoimmune diseases also face medication adherence problems. On one hand, we see people getting confused by prescriptions from different specialists and pills that often look similar or have different names due to generics. On the other, the fear of side effects dissuades patients from taking their medication appropriately. In both situations, patients can face very serious issues if they don’t fully understand their medication regimen and closely follow the instructions from their doctors.

While these three issues present challenges for patients living with autoimmune related diseases, the good news is that there are several valuable tips for people in Medicare to coordinate their care. In the next blog post, we’ll look at tips for patients to take control of their own care coordination and resources from AARDA that can help people in Medicare and their families better understand the challenges associated with autoimmune diseases.