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A UTOIMMUNE D ISEASE A WARENESS M ONTH N EWS B RIEFING : T HE S TATUS OF A UTOIMMUNE D ISEASE M ARCH 18, 2014 National Coalition of Autoimmune Patient.

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Presentation on theme: "A UTOIMMUNE D ISEASE A WARENESS M ONTH N EWS B RIEFING : T HE S TATUS OF A UTOIMMUNE D ISEASE M ARCH 18, 2014 National Coalition of Autoimmune Patient."— Presentation transcript:

1 A UTOIMMUNE D ISEASE A WARENESS M ONTH N EWS B RIEFING : T HE S TATUS OF A UTOIMMUNE D ISEASE M ARCH 18, 2014 National Coalition of Autoimmune Patient Groups (NCAPG) 1

2 A GENDA 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 2

3 N ATIONAL C OALITION OF A UTOIMMUNE P ATIENT G ROUPS (NCAPG) 3

4 Mission Statement To 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. 4

5 NCAPG M EMBERS 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 5

6 NCAPG M EMBERS 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 6

7 M ARCH IS A UTOIMMUNE D ISEASE A WARENESS M ONTH Unmet needs impacting on autoimmune patients Affordable Care Act (ACA) Delayed diagnosis Physician education Awareness No multiple specialty center of excellence No autoimmune disease registry 7

8 T HANK YOU ! 8

9 W HAT ARE A UTOIMMUNE D ISEASES ? 9

10 A UTOIMMUNE DISEASES ARE THE RESULT OF A MISDIRECTED IMMUNE SYSTEM THAT CAUSES ONE S OWN IMMUNE SYSTEM TO ATTACK THE SELF 10

11 A UTOIMMUNITY AT A G LANCE 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 11

12 A UTOIMMUNE DISEASE CAN AFFECT ANY PART OF THE BODY 12

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14 T HANK YOU ! 14

15 ACA S URVEY National Coalition of Autoimmune Patient Groups (NCAPG) 15

16 F RAMING T HOUGHTS Overview of this survey and why NCAPG conducted it The power and importance of advocacy 16

17 A GE & S EX OF S URVEY R ESPONDENTS R EFLECTS THE DISPROPORTIONATE IMPACT OF AUTOIMMUNITY ON WOMEN 17

18 W HAT CONDITIONS WERE YOU DIAGNOSED WITH ? Disease# Respondents Addison's Disease97 Hashimoto's disease32 Rheumatoid arthritis23 Crohn's disease22 Fibromyalgia19 Sjogren's Disease19 Lupus (SLE)18 Graves' disease12 Ulcerative Colitis11 Autoimmune thyroid disease9 Other AD95 No Response81 Non AD43 18

19 W ERE YOU INSURED PRIOR TO THE ACA? 19

20 I F YOU WERE UNINSURED PRIOR TO THE ACA, WAS IT DUE TO HAVING A PREEXISTING CONDITION OR BEING UNABLE TO AFFORD A PREMIUM ? 20

21 I F YOU WERE PREVIOUSLY UNINSURED, WERE YOU ABLE TO ENROLL IN THE ACA? 21

22 W HEN THE ACA BECAME EFFECTIVE, DID YOU HAVE TO SELECT A NEW PLAN ? 22

23 H AS YOUR PREMIUM INCREASED ? 23

24 H AS YOUR DEDUCTIBLE INCREASED, DECREASED OR REMAINED ABOUT THE SAME AFTER ENROLLING IN THE ACA? 24

25 H AS YOUR COVERAGE INCREASED, DECREASED OR REMAINED THE SAME IN THE SERVICES IMPORTANT TO YOU ? 25

26 H AS THE PRICE OF YOUR PRESCRIPTIONS INCREASED, DECREASED OR REMAINED THE SAME ? 26

27 W ERE YOU ABLE TO KEEP THE SAME PRESCRIPTIONS THAT YOU HAD PRIOR TO THE ACA? 27

28 H AVE YOU SUFFERED ADVERSE REACTIONS DUE TO DRUG CHANGES ? 28

29 W ERE YOU ABLE TO KEEP THE SAME SPECIALISTS THROUGH THE ACA? 29

30 D O YOU HAVE CONCERNS ABOUT THE ACCESSIBILITY OF SPECIALISTS UNDER THE ACA? 30

31 W ERE YOU BETTER OFF BEFORE OR AFTER THE ACA? 31

32 R ESPONSES R EFLECT S OME I MPROVEMENTS, BUT A S TRONG N EED FOR C ONTINUED A DVOCACY 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. 32

33 T HANK YOU ! 33

34 AARDA A UTOIMMUNE D ISEASE D IAGNOSIS S URVEYS 34

35 AD D IAGNOSIS T AKES AN I NORDINATE A MOUNT OF T IME AND P ERSEVERANCE Survey Issues1996200120062013 Years to Diagnosis5444 No. Physicians Seen6445 Labeled Chronic Complainer 64%45% 51% 35

36 Y EARS TO D IAGNOSIS 36

37 N UMBER OF D OCTORS S EEN TO GET A D IAGNOSIS 37

38 P ERCENT TOLD THEIR DISEASE WAS IMAGINED OR THEY WERE OVERLY CONCERNED … 38

39 Why so Long and Difficult to Get a Correct Diagnosis? Physician Education was identified as a contributing factor. 39

40 AARDA C ONDUCTED A S URVEY OF P HYSICIANS 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. 40

41 I N MEDICAL SCHOOL, HOW MUCH TRAINING IN AUTOIMMUNE DISEASES DID YOU RECEIVE ? 41

42 W OULD YOU AGREE THAT YOU RECEIVED ENOUGH TRAINING TO DIAGNOSE AND TREAT AUTOIMMUNE DISEASE ? 42

43 W HAT IS YOUR LEVEL OF COMFORT IN DIAGNOSING AUTOIMMUNE DISEASE ? 43

44 S TRATEGIC G OAL 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 44

45 P UBLIC A WARENESS ALSO CONTRIBUTES TO THE PROBLEM Awareness Study GFK randomly surveyed 1000 Americans Study is conducted every five to seven Years to measure progress 45

46 P UBLIC A WARENESS OF A UTOIMMUNE D ISEASES 1992200120082013 Correctly name an autoimmune disease 5%6%13%15% Thought AIDS was an autoimmune disease 93%38%32%21% 46

47 N EED FOR A M ULTIPLE S PECIALIST C ENTER OF E XCELLENCE FOR D IAGNOSING AND T REATING A UTOIMMUNE D ISEASES A patient Survey Would you travel to a center to get diagnosed? Yes - 75% No - 25% 47

48 T RAVEL TO A C ENTER FOR : ( MAY SELECT MORE THAN ONE ) Second opinion69.7% Specialized treatment86.5% Coordinated care76.9% 48

49 I MPROVED A UTOIMMUNE D ISEASE D IAGNOSIS R EQUIRES Increased Physician education Increased Public Awareness Autoimmune Disease Multi-Specialist Center 49

50 R ETURN ON I NVESTMENT Fewer chronic disabilities Less human suffering Dramatic reduction in AD healthcare costs 50

51 T HANK YOU ! 51

52 T HE A UTOIMMUNE D ISEASE R EGISTRY 52

53 I N THE US TODAY, THERE ARE 13,027,914 INDIVIDUALS WITH CANCER H OW MANY HAVE AUTOIMMUNE DISEASE ? 9 MILLION ? 23 MILLION ? 50 MILLION ? 53

54 W HAT IS GOAL OF THE A UTOIMMUNE D ISEASE R EGISTRY ? 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 research Public health reporting It will not be used for: Fundraising Patient treatment It will be the SEER system for Autoimmune Disease 54

55 W HAT DO SEER & NAACCR DO FOR C ANCER ? 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. 55

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66 T HE 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. 66

67 P ROPOSED M ILESTONES 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/)http://seer.cancer.gov/data/ Identify sources of ongoing funding for the ADR and submit proposals to promising sources. 67

68 N EXT S TEPS 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 68

69 T HANK YOU ! 69

70 A UTOIMMUNE D ISEASE A WARENESS M ONTH N EWS B RIEFING : T HE S TATUS OF A UTOIMMUNE D ISEASE M ARCH 18, 2014 National Coalition of Autoimmune Patient Groups (NCAPG) 70


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