autoimmune disease awareness month news briefing: the status of autoimmune disease march 18, 2014
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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). Agenda. Bob Goldberg NCAPG, The National Coalition of Autoimmune Patient Groups ADAM, Autoimmune Disease Awareness Month Virginia Ladd - PowerPoint PPT PresentationTRANSCRIPT
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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 4No. Physicians Seen 6 4 4 5Labeled 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 NeutralSomewhat 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 GOALAARDA 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 2013Correctly 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 MILESTONESShort 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)