Autoimmune Disease Awareness Month - PowerPoint Presentation

1. Autoimmune Disease Awareness MonthNews Briefing: The Status of Autoimmune DiseaseMarch 18, 2014National Coalition of Autoimmune Patient Groups (NCAPG)1

2. AgendaBob GoldbergNCAPG, The National Coalition of Autoimmune Patient GroupsADAM, Autoimmune Disease Awareness MonthVirginia LaddWhat are Autoimmune Diseases?Stephanie HalesThe NCAPG Accountable Care Act Survey Results Stanley FingerThe need for Physician EducationAaron AbendThe Autoimmune Disease Registry2

3. National Coalition of Autoimmune Patient Groups (NCAPG)3

4. 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.4

5. NCAPG MembersAmerican Autoimmune Related Diseases Association American Behçet's Disease AssociationAmerican Vitiligo Research FoundationAPS Foundation of AmericaArthritis FoundationCeliac Disease FoundationCeliac Sprue AssociationCoalition for Pulmonary Fibrosis Crohn's and Colitis Foundation of AmericaDysatonomia International Endometriosis AssociationGluten Intolerance GroupGraves’ Disease FoundationInternational Foundation for Autoimmune ArthritisInternational Pemphigus & Pemphigoid FoundationLupus Foundation of America5

6. NCAPG MembersLupus Foundation of Mid and Northern New YorkMyasthenia Gravis Foundation of America National Adrenal Diseases FoundationNational Alopecia Areata FoundationNational Kidney FoundationNational Multiple Sclerosis Society National Psoriasis FoundationNational Sleep FoundationP.A.N.D.A.S. Network.orgPlatelet Disorder Support AssociationScleroderma FoundationSjögren's Syndrome FoundationThe Myositis AssociationTransverse Myelitis AssociationU.S. Pain FoundationVasculitis FoundationVitiligo Support International6

7. March is Autoimmune Disease Awareness MonthUnmet needs impacting on autoimmune patientsAffordable Care Act (ACA)Delayed diagnosisPhysician educationAwareness No multiple specialty center of excellence No autoimmune disease registry 7

8. Thank you!8

9. What are Autoimmune Diseases?9

10. Autoimmune diseases are the result of a misdirected immune system that causes one’s own immune system to attack the self10

11. 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 women11

12. Autoimmune disease can affect any part of the body12

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14. Thank you!14

15. ACA SurveyNational Coalition of Autoimmune Patient Groups (NCAPG)15

16. Framing ThoughtsOverview of this survey and why NCAPG conducted itThe power and importance of advocacy16

17. Age & Sex of Survey Respondents Reflects the disproportionate impact of autoimmunity on women 17

18. What conditions were you diagnosed with? Disease# RespondentsAddison's Disease97Hashimoto's disease32Rheumatoid arthritis23Crohn's disease22Fibromyalgia19Sjogren's Disease19Lupus (SLE)18Graves' disease12Ulcerative Colitis11Autoimmune thyroid disease9Other AD95No Response81Non AD4318

19. Were you insured prior to the ACA?19

20. If you were uninsured prior to the ACA, was it due to having a preexisting condition or being unable to afford a premium?20

21. If you were previously uninsured, were you able to enroll in the ACA?21

22. When the ACA became effective, did you have to select a new plan?22

23. Has your premium increased? 23

24. Has your deductible increased, decreased or remained about the same after enrolling in the ACA?24

25. Has your coverage increased, decreased or remained the same in the services important to you?25

26. Has the price of your prescriptions increased, decreased or remained the same?26

27. Were you able to keep the same prescriptions that you had prior to the ACA?27

28. Have you suffered adverse reactions due to drug changes?28

29. Were you able to keep the same specialists through the ACA?29

30. Do you have concerns about the accessibility of specialists under the ACA?30

31. Were you better off before or after the ACA?31

32. 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.”32

33. Thank you!33

34. AARDA Autoimmune Disease Diagnosis Surveys34

35. AD Diagnosis Takes an Inordinate Amount of Time and PerseveranceSurvey Issues1996200120062013Years to Diagnosis5444No. Physicians Seen6445Labeled Chronic Complainer64%45%45%51%35

36. Years to Diagnosis36

37. Number of Doctors Seen to get a Diagnosis37

38. Percent 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 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.40

41. In medical school, how much training in autoimmune diseases did you receive? 41

42. Would you agree that you received enough training to diagnose and treat autoimmune disease?42

43. What is your level of comfort in diagnosing autoimmune disease?43

44. Strategic GoalAARDA is conducting a larger study to determine:Level of physician educationPhysicians’ preferred way of continuing educationWith the goal of developingA syllabus for medical schoolA Continuing Medical Education program for autoimmune diseases44

45. Public Awareness also contributes to the problemAwareness StudyGFK randomly surveyed 1000 AmericansStudy is conducted every five to sevenYears to measure progress 45

46. Public Awareness of Autoimmune Diseases1992200120082013Correctly name an autoimmune disease5%6%13%15%Thought AIDS was an autoimmune disease93%38%32%21%46

47. Need for a Multiple Specialist Center of Excellence for Diagnosing and Treating Autoimmune DiseasesA patient SurveyWould you travel to a center to get diagnosed?Yes - 75%No - 25%47

48. Travel to a Center for: (may select more than one) Second opinion 69.7%Specialized treatment 86.5%Coordinated care 76.9%48

49. Improved Autoimmune Disease Diagnosis Requires Increased Physician education Increased Public Awareness Autoimmune Disease Multi-Specialist Center 49

50. Return on InvestmentFewer chronic disabilitiesLess human sufferingDramatic reduction in AD healthcare costs50

51. Thank you!51

52. The Autoimmune Disease Registry52

53. In the US today, there are 13,027,914 individuals with cancerHow many have autoimmune disease?9 million? 23 million? 50 million?53

54. 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 registriesIt will be used for:Research - for cohort discovery and some population researchPublic health reporting It will not be used for:FundraisingPatient treatmentIt will be the SEER system for Autoimmune Disease54

55. 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 RegistriesA professional organization that develops and promotes uniform data standards for cancer registrationProvides 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. The ADR can accomplish the followingProvide 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. Proposed MilestonesShort TermTake 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 TermEstablish 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.67

68. Next StepsEstablish a governing process for NCAPG oversight and control of the registryEstablish protocols for data handling and useBegin to aggregate de-identified NCAPG dataCreate a central query resource for de-identified AD DataEngage with NIH and others to bring all AD under a single umbrella, like Cancer68

69. Thank you!69

70. Autoimmune Disease Awareness MonthNews Briefing: The Status of Autoimmune DiseaseMarch 18, 2014National Coalition of Autoimmune Patient Groups (NCAPG)70