1. MS: A Perspective on the African American Experience Mary D. Hughes, MD Medical Director, Neuroscience Associates University Medical Group Greenville Hospital System

2. Why have this teleconference?

3. Access to health care differs Women’s Health –Less likely to receive care –More likely to receive it late Immunization rates –Pneumonia vaccine rates 26 versus 50% –Flu vaccine rates 47 versus 66%

4. Difference in Type of Health care Accessed Increased reliance on alternative medications and home remedies Increased usage of health professionals such as chiropractors rather than physicians

5. Diseases that we know are different Diabetes Hypertension Heart disease Stroke Osteoporosis

6. Mistrust of the Health care system

7. Tuskegee Syphilis Experiment “The United States government did something that was wrong-deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens…. Clearly racist.” President Clinton’s apology May 1997

8. Disparities in the Experience of Health Care Patient–physician communication Cultural competence in health care services Quality of clinical care Access to care

10. Demographic features of MS Gender –Female predominance 4:1 in Relapsing Remitting –1:1 in Primary progressive Age –Onset 15-50 90%, average 30 Race –Caucasian predominant (>90%) Frequency –Varies dependent on geographic location

11. Environmental factors Abnormal immunologic response Genetic predisposition Infectious agent MS Potential Triggers for Multiple Sclerosis

12. So what do we know about MS across different Ethnic backgrounds?

13. Epidemiology of multiple sclerosis in US veterans: VII. Risk factors for MS “….there were insufficient numbers of black women and women of other races to permit their study.” Kurtzke, J. Neurology 1997

14. Epidemiology of multiple sclerosis in US veterans: VII. Risk factors for MS “Among black male WWII subjects, MS risk was significantly higher among those with more education, higher socioeconomic status, and higher service test score…” Kurtzke, J. Neurology 1997

15. Experience in FDA trials for medications for MS Of the 939 Patients who participated in a Phase III study for Betaseron ® in secondary progressive MS patients there were: 62 African American 15 Hispanic

16. MS in Africa?

17. Multiple Sclerosis: epidemic in Kenya Adams, AM East African Medical Journal 1989 6 Review of 6 patients

18. Demyelinating disorder of the central nervous system occurring in black South Africans “To date there are only 12 reported black patients from South Africa and Zimbabwe with possible MS.” G Modi, et al. J Neurol Neurosurg Psychiatry 2001

19. MS: Does ethnicity matter?

20. Evidence Trial RaceAACA Number of patients36616 Baseline lesions2.32.6 Mean attack Rate in prior 2 years 2.42.6 Relapse free 48 weeks47%57% Mean Relapses.73.57 Cree et al. Annals of Neurology 2003

21. Evidence Trial RaceAACA Number of patients36616 Baseline lesions2.32.6 Mean attack Rate in prior 2 years 2.42.6 Relapse free 48 weeks47%57% Mean Relapses.73.57 Cree et al. Annals of Neurology 2003

22. Evidence Trial RaceAACA Number of patients36616 Baseline lesions2.32.6 Mean attack Rate in prior 2 years 2.42.6 Relapse free 48 weeks47%57% Mean Relapses.73.57 Cree et al. Annals of Neurology 2003

23. Common symptoms of MS Blurred or double vision Loss of vision in one eye Slurred or slowed speech Easy fatigability Problems with thinking Poor balance Numbness or pins and needles Poor bladder or bowel control Difficulty with walking Tremor

24. Optic Neuritis in African Americans “The AA study patients with a single episode of demyelinating optic neuritis had visual acuities more severely affected at onset and after 1 year of follow-up compared with the white study patients and with patients in the ONTT.” Phillip, P Archives of Neurology, 1998

25. Optic Neuritis in African Americans “In the AA patients, MS occurred more frequently in a ‘neuromyelitis optica’ form.” Phillip, P Archives of Neurology, 1998

26. Is it in the Genes?

27. Mapping Of Genes Am. J. Hum. Genet. 74:979–1000, 2004 Proportion of European Ancestry is ~ 20% for African Americans and ~60% for Hispanic American Populations

29. My Inspiration