When Your Body Attacks, Who Fights for You?
Advocacy Autoimmune diseases run in families, and with 50 million Americans affected, everyone knows someone living with at least one chronic, autoimmune disease.
Autoimmune diseases (AD) are many and complex. More than 50 million Americans suffer from the more than 100 known ADs including:
Rheumatic (rheumatoid arthritis)
Neurologic (multiple sclerosis, myasthenia gravis)
Vascular (Kawasaki diseases)
Endocrine (Hashimoto’s thyroiditis)
Taking on an advocacy role for so many who suffer with such diverse diseases may seem a daunting task, but for us, the common threads that tie these diseases together creating a category of disease—like cancer—form the basis of the decades of work our collective progress can be measured by.
"It takes an average of five physician visits over three-and-half years for a patient to finally be diagnosed properly."
Despite their sheer number and complexity, ADs share a number of important similarities. First and foremost is the mechanism of disease. With ADs, the immune system mistakenly recognizes the body’s own proteins as foreign viruses and bacteria, producing antibodies that attack otherwise healthy cells and tissue. The resulting disease then depends on what organ or system these antibodies target.
Landing a diagnosis
The inability to get a correct diagnosis in a reasonable period of time also is a challenge many AD patients experience. Research shows that it takes an average of five physician visits over three-and-half years for a patient to finally be diagnosed properly. That is unacceptable. Time to diagnosis could be cut drastically if patients had access to autoimmune centers where various specialists work together.
Once diagnosed, an AD patient’s next hurdle can be obtaining the proper treatment because, despite recent positive advances, insurance companies often deny patients access to medicines. However, important work is being done right now to correct many of these problematic practices which include reducing or denying coverage of specialty medicines and limiting the number of providers available within networks who care for AD patients.
Symptoms are another matter. While they range as widely as the diseases themselves, there is one symptom almost all patients experience: profound fatigue. In a recent survey, virtually all of the nearly 8,000 AD patients responding said “profound,” “debilitating” fatigue that “prevents them from doing even the simplest of everyday tasks” and is a major issue for them that “impacts nearly every aspect” of their lives. Yet, for too long, fatigue has been ignored or misunderstood by the medical community and the public at large. It’s time we invested more research to advance understanding and effective treatments for fatigue.
For the last 25 years, we have worked fighting for patients’ rights, insisting on better treatments and diagnostic tools, raising money for research and educating the world about ADs.
But, everyone has a role to play here and there is still much work to do.
We cannot rest until autoimmunity is included in all medical school curricula, the public understands the debilitating nature of these chronic diseases and most important, that all patients can be properly diagnosed and have full access to the medicines that can save their lives.