Newswise — WASHINGTON, MARCH 18, 2014 -- March is National Autoimmune Disease Awareness Month (ADAM). In honor of ADAM, the National Coalition of Autoimmune Patient Groups today held a news briefing at the National Press Club to announce findings from a series of surveys of autoimmune disease patients and a preliminary study of physicians. Officials also unveiled plans to create a new, first-of-its-kind national autoimmune disease registry.

Autoimmune Disease In the Age of the Affordable Care ActA new web-based survey of autoimmune disease patients* finds that while two-thirds (66 percent) have been able to continue seeing their specialists, nearly half (45 percent) have concerns about continued accessibility to specialists under the Affordable Care Act (ACA).

When it comes to premiums, deductibles, access to services and prescription costs, autoimmune patients’ report mixed experiences under ACA. For example:

● 42 percent say their premiums have increased compared to 58 percent who say they did not.● 34 percent cite increased deductibles while 40 percent say their deductibles have stayed the same. Eight percent say they decreased.● 36 percent believe the services they receive have decreased; 33 percent say they’ve stayed the same and 23 percent report increases.●38 percent report increased drug costs while 43 percent report the same costs and 10 percent report decreases.

“Appreciating how early it is in the ACA’s implementation, this survey provides some very preliminary data on the experiences of patients with autoimmune diseases. This initial information reflects that the ACA has helped many people so far, but that continued improvements are needed to ensure that the ACA is implemented in a way that meets the needs of patients with serious and chronic conditions—including autoimmune diseases,” said Stephanie P. Hales, Associate, Sidley Austin LLP. “It is clear that more must be done to ensure that patients with autoimmune diseases have meaningful access to affordable coverage.”

“At AARDA, we hear from autoimmune disease patients every day who have had to find new plans that basically don’t meet their healthcare needs,” said Virginia T. Ladd, President, American Autoimmune Related Diseases Association. “These are still early days for the Affordable Care Act. When it is fully implemented and employers are required to change the plans they offer their employees, the Coalition does plan to do a follow-up survey of autoimmune disease patients to learn whether or not they still have access to the specialists and medicines they so desperately need.”

(*A total of 481 individuals responded to this Survey Monkey online survey. Of those, 357 indicated they suffered with one or more autoimmune diseases.)

Difficulties in Obtaining an Autoimmune Disease DiagnosisSince 1996, American Autoimmune Related Diseases Association (AARDA) has conducted benchmark research to track the number of years it takes and the number of doctors a patient sees from the onset of symptoms to proper diagnosis. According to the latest analysis, patients report it takes more than three-and-a-half years and nearly five doctors to receive a correct autoimmune disease diagnosis.

“While the numbers are down from the first survey which found 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,” said AARDA’s Vice Chairman of the Board Dr. Stanley Finger.

Finger added that this diagnosis problem led AARDA to conduct a preliminary study of 130 family physicians in fall 2013. That study found:

● 64 percent of family physicians stated they are “uncomfortable” or “stressed” when diagnosing autoimmune disease in patients.●73 percent do not believe they received adequate training in diagnosing and treating autoimmune diseases.”● 57 percent reported they had only one or two lectures on autoimmune disease in medical school.

“Based on the doctors’ responses, AARDA has launched a full scale study of family physicians, both medical and osteopathic, to further explore these issues and develop targeted education programs to bolster physician awareness of and comfort levels in diagnosing and treating autoimmune diseases, “said AARDA’s Finger.

The full scale study is currently in the field and will be released later in 2014.

National Autoimmune Disease RegistryThe National Autoimmune Disease Registry (NADR) is a first-of-its-kind database that will eventually include every patient suffering from an autoimmune disease. Modeled on a similar registry for cancer patients, the NADR will provide researchers access to:

• statistics on the burden of AD on public health;• statistics on multiple-disease sufferers; • a central resource for recruitment of patients for clinical trials;

“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 sometimes common, sometimes rare manifestations,” said Aaron Abend, Informatics Director, AARDA. - # # # -

About Autoimmune Disease and AutoimmunityAutoimmune disease (AD) disproportionately affects women. Of the 50 million Americans living and coping with ADs, more than 75 percent are women. AD is one of the top 10 leading causes of death of women under the age of 65. It encompasses more than 100 diseases, including psoriasis, Graves’ disease, Sjogren’s syndrome, multiple sclerosis, rheumatoid arthritis, Crohn’s disease and lupus. It is responsible for more than $100 billion in direct health care costs annually.

Autoimmunity is the underlying cause of autoimmune disease. It is the process whereby the immune system mistakenly recognizes the body's own proteins as foreign invaders and begins producing antibodies that attack healthy cells and tissues, causing a variety of diseases.

About the National Coalition of Autoimmune Patient GroupsThe National Coalition of Autoimmune Patient Groups is spearheaded by American Autoimmune Related Diseases Association, Inc. and represents 33 member autoimmune patient groups. Together, they work to educate the public on their individual autoimmune diseases as well as the common thread of autoimmunity which connects them all.

About American Autoimmune Related Diseases Association, Inc.American Autoimmune Related Diseases Association (AARDA) is the nation's only non-profit organization dedicated to bringing a national focus to autoimmunity as a category of disease and a major women's health issue, and promoting a collaborative research effort in order to find better treatments and a cure for all autoimmune diseases. For more information, please visit

Follow AARDA on social media, including:Facebook ( (@AARDATweets)YouTube (