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AUTOIMMUNE DISEASE AWARENESS MONTH

NEWS BRIEFING: THE STATUS OF AUTOIMMUNE DISEASE

MARCH 18, 2014

National Coalition of Autoimmune Patient Groups (NCAPG)

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AGENDA

Bob Goldberg NCAPG, The National Coalition of Autoimmune Patient Groups ADAM, Autoimmune Disease Awareness Month

Virginia Ladd What are Autoimmune Diseases?

Stephanie Hales The NCAPG Accountable Care Act Survey Results

Stanley Finger The need for Physician Education

Aaron Abend The Autoimmune Disease Registry

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NATIONAL COALITION OF AUTOIMMUNE PATIENT GROUPS

(NCAPG)

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NATIONAL COALITION OF AUTOIMMUNE PATIENT GROUPS (NCAPG)

 

Mission StatementTo consolidate the voice of

autoimmune disease patients and to promote increased education,

awareness, and research into all aspects of autoimmune diseases

through a collaborative approach.

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NCAPG MEMBERS American Autoimmune Related Diseases Association American Behçet's Disease Association American Vitiligo Research Foundation APS Foundation of America Arthritis Foundation Celiac Disease Foundation Celiac Sprue Association Coalition for Pulmonary Fibrosis Crohn's and Colitis Foundation of America Dysatonomia International Endometriosis Association Gluten Intolerance Group Graves’ Disease Foundation International Foundation for Autoimmune Arthritis International Pemphigus & Pemphigoid Foundation Lupus Foundation of America

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NCAPG MEMBERS Lupus Foundation of Mid and Northern New York Myasthenia Gravis Foundation of America National Adrenal Diseases Foundation National Alopecia Areata Foundation National Kidney Foundation National Multiple Sclerosis Society National Psoriasis Foundation National Sleep Foundation P.A.N.D.A.S. Network.org Platelet Disorder Support Association Scleroderma Foundation Sjögren's Syndrome Foundation The Myositis Association Transverse Myelitis Association U.S. Pain Foundation Vasculitis Foundation Vitiligo Support International

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MARCH IS AUTOIMMUNE DISEASE AWARENESS MONTH

Unmet needs impacting on autoimmune patients

Affordable Care Act (ACA)Delayed diagnosisPhysician educationAwareness No multiple specialty center of excellence No autoimmune disease registry

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THANK YOU!

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WHAT ARE AUTOIMMUNE DISEASES?

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AUTOIMMUNE DISEASES ARE THE RESULT OF A MISDIRECTED IMMUNE SYSTEM THAT CAUSES ONE’S OWN IMMUNE SYSTEM TO ATTACK THE SELF

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AUTOIMMUNITY AT A GLANCE

Over 100 diseases Affecting 50 million

Americans Costing over $120 billion

annually 250,000 new diagnoses

each year A major cause of death in

women

Women75%

Men25%

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AUTOIMMUNE DISEASE CAN AFFECT ANY PART OF THE BODY

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THANK YOU!

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ACA SURVEY

National Coalition of Autoimmune Patient Groups (NCAPG)

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FRAMING THOUGHTS

Overview of this survey and why NCAPG conducted it The power and importance of advocacy

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AGE & SEX OF SURVEY RESPONDENTS REFLECTS THE DISPROPORTIONATE IMPACT OF

AUTOIMMUNITY ON WOMEN

Male

Female

0% 20% 40% 60% 80% 100%

13%

87%

60 or older

50-59

40-49

30-39

21-29

18-20

17 or younger

0% 5% 10% 15% 20% 25% 30% 35%

18%

32%

21%

17%

9%

1%

3%

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WHAT CONDITIONS WERE YOU DIAGNOSED WITH?

Disease # RespondentsAddison's Disease 97Hashimoto's disease 32Rheumatoid arthritis 23Crohn's disease 22Fibromyalgia 19Sjogren's Disease 19Lupus (SLE) 18Graves' disease 12Ulcerative Colitis 11Autoimmune thyroid disease 9

Other AD 95No Response 81Non AD 43

Non ADNo Response

Other AD

Autoimmune thyroid diseaseUlcerative Colitis

Graves' diseaseLupus (SLE)

Sjogren's DiseaseFibromyalgia

Crohn's diseaseRheumatoid arthritisHashimoto's disease

Addison's Disease

0% 5% 10% 15% 20% 25%

9%

17%

20%

2%

2%

2%

4%

4%

4%

5%

5%

7%

20%

Series 1

Series 1

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WERE YOU INSURED PRIOR TO THE ACA?

No

Yes

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

10%

90%

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IF YOU WERE UNINSURED PRIOR TO THE ACA, WAS IT DUE TO HAVING A PREEXISTING CONDITION OR BEING UNABLE

TO AFFORD A PREMIUM?

Insured prior to the ACA

Uninsured due to existing condition

Uninsured due to cost

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

88%

5%

6%

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IF YOU WERE PREVIOUSLY UNINSURED, WERE YOU ABLE TO ENROLL IN THE ACA?

NR

No because I could not afford the

premium

No because I did not qualify for a subsidy

Yes

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

86%

3%

5%

6%

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WHEN THE ACA BECAME EFFECTIVE, DID YOU HAVE TO SELECT A NEW PLAN?

NR

No

Yes

0% 10% 20% 30% 40% 50% 60% 70%

12%

62%

26%

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HAS YOUR PREMIUM INCREASED?

No

Yes

0% 10% 20% 30% 40% 50% 60% 70%

58%

42%

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HAS YOUR DEDUCTIBLE INCREASED, DECREASED OR REMAINED ABOUT THE SAME AFTER ENROLLING IN THE

ACA?

NR

Remained about the same

Decreased

Increased

0% 5% 10% 15% 20% 25% 30% 35% 40% 45%

18%

40%

8%

34%

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HAS YOUR COVERAGE INCREASED, DECREASED OR REMAINED THE SAME IN THE SERVICES IMPORTANT TO

YOU?

NR

Remained about the same

Decreased

Increased

0% 5% 10% 15% 20% 25% 30% 35% 40%

8%

33%

36%

23%

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HAS THE PRICE OF YOUR PRESCRIPTIONS INCREASED, DECREASED OR REMAINED THE SAME?

NR

Remained the same

Decreased

Increased

0% 5% 10% 15% 20% 25% 30% 35% 40% 45%

10%

43%

10%

38%

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WERE YOU ABLE TO KEEP THE SAME PRESCRIPTIONS THAT YOU HAD PRIOR TO THE ACA?

NR

No

Yes

0% 10% 20% 30% 40% 50% 60% 70% 80%

14%

17%

69%

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HAVE YOU SUFFERED ADVERSE REACTIONS DUE TO DRUG CHANGES?

No

Yes

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

86%

14%

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WERE YOU ABLE TO KEEP THE SAME SPECIALISTS THROUGH THE ACA?

NR

No

Yes

0% 10% 20% 30% 40% 50% 60% 70%

20%

14%

66%

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DO YOU HAVE CONCERNS ABOUT THE ACCESSIBILITY OF SPECIALISTS UNDER THE ACA?

NR

No

Yes

0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%

22%

33%

45%

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WERE YOU BETTER OFF BEFORE OR AFTER THE ACA?

No Change

After

Before

0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%

44%

16%

40%

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RESPONSES REFLECT SOME IMPROVEMENTS, BUT A STRONG NEED FOR CONTINUED ADVOCACY

“I believe the ACA is a step in the right direction. Improvements are necessary, for instance out of network options.”

“I love ACA. I am now getting the help and medications I needed, plus test confirms ... not [rheumatoid arthritis] as first suspected ... [mixed connective tissue disease].”

“[M]y employer had to change or insurance provider. Now I pay higher premiums, higher copays, and three of my specialists are no longer on our new plan.”

“I was adversely affected when my former employer switched to a high deductible [health plan] when anticipating the premium jump ACA would cause.”

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THANK YOU!

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AARDA AUTOIMMUNE DISEASE DIAGNOSIS SURVEYS

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AD DIAGNOSIS TAKES AN INORDINATE AMOUNT OF TIME AND PERSEVERANCE

Survey Issues 1996 2001 2006 2013Years to Diagnosis 5 4 4 4

No. Physicians Seen 6 4 4 5

Labeled Chronic Complainer

64% 45% 45% 51%

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YEARS TO DIAGNOSIS

Crohn's disease

Lupus (SLE)

Multiple sclerosis

Rheumatoid arthritis

Sjogren's Disease

Total

- 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.0

3.5

3.9

3.2

2.7

4.3

3.5

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NUMBER OF DOCTORS SEEN TO GET A DIAGNOSIS

Crohn's disease

Lupus (SLE)

Multiple sclerosis

Rheumatoid arthritis

Sjogren's Disease

All 5 diseases

- 1.0 2.0 3.0 4.0 5.0 6.0 7.0

3.9

4.8

3.8

3.8

6.5

4.5

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PERCENT TOLD THEIR DISEASE WAS IMAGINED OR THEY WERE OVERLY CONCERNED …

Crohn's disease

Lupus (SLE)

Multiple sclerosis

Rheumatoid arthritis

Sjogren's Disease

All 5 diseases

0% 10% 20% 30% 40% 50% 60% 70%

53%

52%

48%

44%

59%

51%

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Why so Long and Difficult to Get a Correct Diagnosis?

Physician Education was identified as a contributing

factor.

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AARDA CONDUCTED A SURVEY OF PHYSICIANS

AARDA participated in an educational workshop attended by 130 family physicians.

Participants were asked to participate in a survey on the extent of their knowledge of autoimmune diseases.

The survey results prompted a larger ongoing study.

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13%

27.8%18.5%

18.5%

22.2%

None 1 Lecture 2 Lectures 3-5 Lectures 5+ Lectures

IN MEDICAL SCHOOL, HOW MUCH TRAINING IN AUTOIMMUNE DISEASES DID YOU RECEIVE?

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WOULD YOU AGREE THAT YOU RECEIVED ENOUGH TRAINING TO DIAGNOSE AND

TREAT AUTOIMMUNE DISEASE?

4.6%7.7% 7.7%

6.2%

12.3%32.3%

29.2%

Strongly Agree Agree Somewhat Agree Neutral

Somewhat Disagree Disagree Strongly Disagree

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WHAT IS YOUR LEVEL OF COMFORT IN DIAGNOSING AUTOIMMUNE DISEASE?

13.5%

50%

25%

11.5%

Stressed Uncomfortable Average ComfortComfortable Very Comfortable

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STRATEGIC GOAL

AARDA is conducting a larger study to determine: Level of physician education Physicians’ preferred way of continuing education

With the goal of developing A syllabus for medical school A Continuing Medical Education program for autoimmune diseases

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PUBLIC AWARENESS ALSO CONTRIBUTES TO THE PROBLEM

Awareness Study GFK randomly surveyed 1000 Americans Study is conducted every five to seven Years to measure progress

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PUBLIC AWARENESS OF AUTOIMMUNE DISEASES

1992 2001 2008 2013

Correctly name an autoimmune disease

5% 6% 13% 15%

Thought AIDS was an autoimmune disease

93% 38% 32% 21%

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NEED FOR A MULTIPLE SPECIALIST CENTER OF EXCELLENCE FOR DIAGNOSING AND TREATING AUTOIMMUNE DISEASES

A patient Survey

Would you travel to a center to get diagnosed? Yes - 75% No - 25%

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TRAVEL TO A CENTER FOR: (MAY SELECT MORE THAN ONE)

Second opinion 69.7%

Specialized treatment 86.5%

Coordinated care 76.9%

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IMPROVED AUTOIMMUNE DISEASE DIAGNOSIS REQUIRES

Increased Physician education

Increased Public Awareness

Autoimmune Disease Multi-Specialist Center

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RETURN ON INVESTMENT

Fewer chronic disabilities

Less human suffering

Dramatic reduction in AD healthcare costs

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THANK YOU!

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THE AUTOIMMUNE

DISEASE REGISTRY

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IN THE US TODAY, THERE ARE 13,027,914 INDIVIDUALS WITH CANCER

HOW MANY HAVE AUTOIMMUNE DISEASE?

9 MILLION? 23 MILLION? 50 MILLION?

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WHAT IS GOAL OF THE AUTOIMMUNE DISEASE REGISTRY?

A system that can count every patient suffering from an autoimmune disease.

It will encompass data already collected by individual disease registries, but it will not supplant those registries

It will be used for:Research - for cohort discovery and some population

researchPublic health reporting

It will not be used for:FundraisingPatient treatment

It will be the SEER system for Autoimmune Disease

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WHAT DO SEER & NAACCR DO FOR CANCER? Surveillance, Epidemiology, and End Results Program (SEER)

The premier source for cancer statistics in the United States; Provides information on cancer statistics in an effort to reduce the

burden of cancer among the U.S. population. The North American Association of Central Cancer Registries

A professional organization that develops and promotes uniform data standards for cancer registration

Provides education and training; Certifies population-based registries; Aggregates and publishes data from central cancer registries; Promotes the use of cancer surveillance data and systems for

cancer control and epidemiologic research, public health programs, and patient care to reduce the burden of cancer in North America.

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THE ADR CAN ACCOMPLISH THE FOLLOWING

Provide a central resource for recruitment of patients for clinical trials;

Provide statistics on the burden of AD on public health; Provide statistics on multiple-disease sufferers; Provide consolidated statistics that can transform the

image of AD as a large number of unrelated and mostly rare diseases to something similar to Cancer – a single disease with a variety of sometimes common, sometimes rare manifestations.

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PROPOSED MILESTONES

Short Term Take results from the current survey and put them into a database for ad hoc

query by NCAPG members; Establish data standards for AD similar to those established by NAACCR for

Cancer; Provide support to NCAPG members to make their own data accessible to

researchers and prepare it for participation in a national network (including addressing the patient consent necessary to accomplish this goal);

Long Term Establish protocols for research using the ADR, including an IRB and an

Honest Broker (an individual tasked with distributing data pursuant to IRB authorization);

Develop a reporting website like SEER for AD (see http://seer.cancer.gov/data/)

Identify sources of ongoing funding for the ADR and submit proposals to promising sources.

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NEXT STEPS

Establish a governing process for NCAPG oversight and control of the registry

Establish protocols for data handling and use Begin to aggregate de-identified NCAPG data Create a central query resource for de-identified AD Data Engage with NIH and others to bring all AD under a single

umbrella, like Cancer

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THANK YOU!

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AUTOIMMUNE DISEASE AWARENESS MONTH

NEWS BRIEFING: THE STATUS OF AUTOIMMUNE DISEASE

MARCH 18, 2014

National Coalition of Autoimmune Patient Groups (NCAPG)