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Applying Compassionate Allowances to Multiple Sclerosis

Outline. Basic MS backgroundCausesSymptomsDiagnosisTypes of MS TreatmentNew research and potential advances on the horizonImpact on activities of daily livingProgression and impact on employmentHow we think MS fits with the CA processChallenges that we recognizeSuggested way to approach M

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Applying Compassionate Allowances to Multiple Sclerosis

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    1. Applying Compassionate Allowances to Multiple Sclerosis

    2. Outline Basic MS background Causes Symptoms Diagnosis Types of MS Treatment New research and potential advances on the horizon Impact on activities of daily living Progression and impact on employment How we think MS fits with the CA process Challenges that we recognize Suggested way to approach MS in terms of Compassionate Allowances

    3. What is MS? A chronic, inflammatory, degenerative, and generally disabling condition affecting the brain, optic nerves, and spinal cord Peak age of onset in the early 30’s; 70% have onset between 20 and 50; onset can occur at any age No pathognomonic sign, symptom, or test and so diagnosis is a result of accumulation of clinical and paraclinical evidence Cause is not known but thought to be autoimmune resulting from genetic predisposition and environmental trigger(s) More common in females, Caucasians, northern Europeans, and those living farther from equator but also involves other ethnic groups No cure or prevention at present but many therapies to alter disease course and treat symptoms

    4. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    5. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    6. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    7. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    8. Axonal transection in the lesions of MS

    9. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    10. Diagnostic techniques The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    11. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    12. Prognostic indicators Better Prognosis Few attacks early in course Long intervals between attacks Complete recovery from attacks Attacks that are mainly sensory Nearly normal neurological exam after 5 years Young when diagnosed Female Caucasian Worse Prognosis Frequent attacks early in course Incomplete recovery from attacks Early cerebellar and/or brainstem symptoms Gait impairment More lesions on MRI early in course Early development of abnormal neurological exam

    13. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    14. Therapies used in MS The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    15. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    16. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    17. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    18. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    19. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    20. Decrease in percent employed with increasing duration of MS

    22. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    23. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    24. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    25. Jacqueline du Pré “ …she had little control of her fingering and bowing…” “…there were times when friends attempted to carry her, in the chair, up or down a flight of stairs, and she unceremoniously ended up on the floor…” “…she again had pneumonia, this time there were no options…”

    26. Supplementary slides Female to male ratio in the MS population 2010 revision of MS diagnostic criteria Use of paraclinical evidence in MS diagnosis Common differential diagnostic conditions FDA approved drugs for the treatment of MS FDA approved drugs used to treat the symptoms of MS Condensed version of the Expanded Disability Status Scale References

    27. MS is more common among women and the gap seems to be growing The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    28. Diagnostic criteria – revised 2010 The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    29. Paraclinical evidence in MS diagnosis - revised 2010 The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    30. Common differential diagnostic conditions Variant Neuromyelitis optica (NMO)/Devic’s – recurrent optic neuritis and transverse myelitis extending over 3 or more vertebral segments More Common Mimics Acute disseminated encephalomyelitis (pediatric cases) Human T-cell lymphotrophic virus-1 (HTLV-1) Mild stroke Neuro Lyme disease Less common mimics Lupus Sjogren’s Myasthenia gravis Sarcoidosis Binswanger's Dural Arteriovenous Fistulas

    31. FDA approved disease modifying therapies The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    32. Examples of FDA approved drugs used to treat the symptoms of MS The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    33. Expanded Disability Status Scale (abbreviated and paraphrased) The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate. The Society has been a driving force of MS research since our beginnings over 60 years ago. Over time, much progress has been made, and the pace of progress is continuing to accelerate.

    34. References Berger JR. Multiple sclerosis. PowerPoint presentation 2008. Accessed 2/25/2011: http://www.cecentral.com/assets/1487/07_SU_MS_Berger.pdf Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology. 1983; 33:1444-52. Minden SL, Frankel D, Hadden LS, Srinath KP, Perloff JN. Disability in elderly people with multiple sclerosis: An analysis of baseline data from the Sonya Slifka Longidtudinal Multiple Sclerosis Study. Neurorehabilitation 2004; 19:55-67. Minden SL, Frankel D, Hadden L, Perloff J, Srinath KP, Hoaglin DC. The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics. Multiple Sclerosis 2006; 12:24-38. Noonan CW, Kathman SJ, White MC. Prevalence estimates for MS in the US and evidence of an increasing trend for women. Neurology 2002; 58:136–138. Polman CH, et al. Diagnostic criteria for multiple sclerosis: 2010 revisions to the “McDonald Criteria.” annals of Neurology. (in press).* Quarles RH, Macklin WB, Morrell P. Myelin formation, structure, and biochemistry. In Siegel GJ, Albers RW. (eds.) Basic neurochemistry, Volume I: molecular, cellular, and medical aspects, Seventh Edition. Burlington, MA, 2006, Elsevier Academic Press. (Chapter 4, pp. 51-72). Rao SM, Leo GJ, Ellington L, Nauertz T, Bernardin L, Unverzagt F. Cognitive dysfunction in multiple sclerosis. II. Impact on employment and social functioning. Neurology 1991; 41:692-696. Social Security Administration. Compassionate Allowances: Advance notice of proposed rulemaking. Federal Register, Vol 72, No. 146, Tuesday, July 31, 2007. (p. 41649). Sonya Slifka Longitudinal Multiple Sclerosis Study – findings from the baseline and follow-up interviews, NMSS research contract #HC 0032: 2006. Trapp BD, Peterson J, Ransohoff RM, Rudick R, Mork S, Bo L. Axonal transection in the lesions of multiple sclerosis. New England Journal of Medicine 1998; 338:278-285. *A pocket card summarizing the 2010 revision of the McDonald Criteria is in preparation by the National MS Society.

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