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NCAPG News Briefing


National Coalition of Autoimmune Patient Groups Release Findings For National Autoimmune Disease Awareness Month

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 Act

A 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 Diagnosis

Since 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.

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1 Comment

  1. […] get an correct autoimmune analysis, and girls make up a whopping 75% of autoimmune illness victims, according to the American Autoimmune Related Diseases Association. The difficult half is that issues like fatigue, temper adjustments, and ache are signs of numerous […]

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