Obstacles to Care in Patients with Autoimmune Disease

The American Autoimmune Related Diseases Association (AARDA) reports that there are as many as 80 to 100 types of autoimmune diseases. Examples of autoimmune diseases include Sjogren’s syndrome, systemic lupus erythematosus (SLE), Hashimoto's thyroiditis, and multiple sclerosis.

Autoimmune disease affects approximately 50 million Americans, and the numbers are steadily growing.

What is Autoimmune Disease?

The immune system is the body's security force, which automatically detects eliminates anything that is considered foreign to that body. This includes viruses, bacteria, and pollen as well as the body's own mutated cells, which could grow into cancers. The immune system also attacks tissues from other bodies, such as organ transplants, which is why transplant patients have to take immune system suppressing drugs. Sometimes the immune system identifies the body's own healthy cells as foreign, and attacks them; this phenomenon is known as autoimmunity or autoimmune disease.

Autoimmune diseases are chronic illnesses that can cause serious health problems. Most people with autoimmune disease need on-going medical care; yet many also encounter serious obstacles to receiving that care.

Obstacles to Healthcare

The obstacles that autoimmune patients encounter are many and varied and they occur in both the diagnostic and treatment stages.

Obstacles to Diagnosis

One of the major obstacles to diagnosis is that doctors don't always think to screen for autoimmune diseases. Patients with autoimmune disease often have to visit multiple doctors over several years before someone thinks to run an antibody test or conduct any other autoimmune diagnostic test.

Some patients persist until they find that doctor. Others give up, from fatigue or frustration, only to get a diagnosis when the diseased has progressed enough to do serious damage.

For example: A patient goes to her doctor complaining of hypothyroid symptoms. The doctor orders the standard thyroid panel — the TSH, T3 and T4 test “ which comes back normal. He tells the patient that there's nothing wrong yet the patient's symptoms worsen as time passes. It's not until the patient finds another doctor who decides to order an autoimmune thyroid panel that she learns that has Hashimoto's thyroiditis.

By the time that happens, she could have developed Hashimoto's complications like heart problems, myxedema, and mental health issues.

Obstacles to Treatment

The biggest obstacle to treatment is that autoimmune diseases have no cure and most of the treatments are focused on either managing the symptoms, or suppressing the immune system. Many of the treatments can also have serious side effects. For many patients, the treatment side effects can lead to compliance issues.

For example, a doctor could prescribe a lupus patient pain killers and steroids to treat inflammation, and immunosuppressive drugs to prevent the antibodies from attacking her organs. The pain killers could make her mental processes foggy, the steroids could cause fluid retention and mood swings, and the immunosuppressive drugs make her more prone to infections. As a result she could stop taking some or all of her meds.

Another obstacle is lack of patient access to the tools they need to manage their own care.

For example, Beckers Hospital Review reports that a large percentage of hospitals have inadequate websites with regards to patient care and services. Sixty-seven percent of the hospitals they reviewed did not have any sort of online patient rehabilitation or aftercare information; and almost 50 percent had no mobile patient websites. Other problem areas included pre-registration for medical procedures, bill pay, and prescription refill requests.

Patients with autoimmune diseases often make use of hospital and clinic services, especially if they need surgery or chemotherapy as part of their treatment. These patients also have serious issues with pain and fatigue, which makes even simple things like waiting in line, difficult. Not having access to a way to register for treatments, or order prescription refills from home or through a mobile app, often leads to compliance issues.

Access to effective health care is another major obstacle. Although the Affordable Care Act has made it easier for lower income individuals to have access to health insurance, there are still individuals who do not have coverage either because their states have not extended Medicaid. For those patients, the treatments are often too expensive, which often leads to compliance issues.