An Overlooked Disease
Autoimmune disease (AD) is a drastically underappreciated problem. There are 80-100 ADs, and researchers suspect that 40 additional diseases have an autoimmune element. AARDA estimates that 50 million Americans suffer from autoimmune disease, but there appears to be an increasing incidence in young adults. AD is responsible for a great deal of human suffering and $100 billion of healthcare costs. Even so, autoimmune research receives less than 3% of the total NIH, despite being the #2 cause of chronic illness.
Virginia Ladd was all too aware of the extent to which this segment of illness had been ignored when she founded the American Autoimmune-Related Disease Association. “I started the AARDA reluctantly,” says Virginia, “but I knew it had to be done, and no one else was going to do it.”
Since its inception in 1991, the AARDA has worked to raise funding and awareness and improve the lives of patients. They were ahead of their time in a world that doesn’t yet understand how to interpret the common features that all autoimmune diseases share.
One commonality of autoimmune disease is the difficulty of finding a correct diagnosis. Symptoms can be vague and inconsistent at first; as a result, 45% of sufferers are dismissed and hypochondriacs in the early stages of their disease.
The AARDA has measured the time it takes for patients to be correctly diagnosed as an indicator of overall progress in autoimmunity. Today, the average time is 3.5 years. Vice Chairman Dr. Stanley Finger comments: “While the numbers are down from [1996 when] it took five years and six doctors to get a diagnosis, this is still unacceptable. The reality is that this results in patients suffering needlessly and often sustaining more severe, irreversible organ damage.”
One reason for the persistent difficulty of diagnosis is a lack of physician education. The AARDA recently conducted a pilot study to assess physicians’ knowledge and confidence in working with autoimmune patients:
- 64% of family physicians stated they are “uncomfortable” or “stressed” when diagnosing AD.
- 73% do not believe they received adequate training in diagnosing and treating AD.
- 57% reported they had only one or two lectures on autoimmune disease in medical school.
In order to help compile knowledge that can help patients, the organization is working on the National Autoimmune Disease Registry (NADR), an innovative database that eventually aims to catalogue each individual living with autoimmune disease. This will help researchers:
- Compile statistics on the prevalence and cost of autoimmune disease.
- Understand how autoimmune disease is distributed throughout the population.
- Access potential clinical trial participants.
“The creation of the National Autoimmune Disease Registry will go a long way toward helping transform the image of autoimmune disease from a large number of unrelated and mostly rare diseases to something similar to cancer – a single disease category with a variety of … manifestations,” says Aaron Abend, Informatics Director.
Bearing out Aaron’s statement, data from this registry have already helped researchers demonstrate that 16 ADs share a common genetic background.
As researchers establish that autoimmunity is a single disorder, will advocacy groups and communities from the various ADs (Lupus, Type I Diabetes, MS, etc.) also recognize their commonality? The AARDA is hoping that they will. This may be the key to catalyzing real progress in all autoimmune diseases.