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Autoimmune Disease Awareness Month News Briefing: The Status of Autoimmune Disease March 18, 2014

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

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Autoimmune Disease Awareness Month News Briefing: The Status of Autoimmune Disease March 18, 2014

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

  2. 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

  3. National Coalition of Autoimmune Patient Groups (NCAPG)

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

  5. 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

  6. 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

  7. March is Autoimmune Disease Awareness Month 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

  8. Thank you!

  9. What are Autoimmune Diseases?

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

  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 women

  12. Autoimmune disease can affect any part of the body

  13. Thank you!

  14. ACA Survey National Coalition of Autoimmune Patient Groups (NCAPG)

  15. Framing Thoughts • Overview of this survey and why NCAPG conducted it • The power and importance of advocacy

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

  17. What conditions were you diagnosed with?

  18. Were you insured prior to the ACA?

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

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

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

  22. Has your premium increased?

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

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

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

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

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

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

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

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

  31. 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. Thank you!

  33. AARDA Autoimmune Disease Diagnosis Surveys

  34. AD Diagnosis Takes an Inordinate Amount of Time and Perseverance

  35. Years to Diagnosis

  36. Number of Doctors Seen to get a Diagnosis

  37. Percent told their disease was imagined or they were overly concerned …

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

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

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

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

  43. 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

  44. 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

  45. Public Awareness of Autoimmune Diseases

  46. 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%

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

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

  49. Return on Investment • Fewer chronic disabilities • Less human suffering • Dramatic reduction in AD healthcare costs

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