1. Awareness and Management of Leprosy in the U.S. USPHS Meeting New Orleans, LA June 22, 2011 David M. Scollard, M.D., Ph.D. Chief, Clinical Branch U.S. Department of Health and Human Services (HHS) Health Resources and Services Administration (HRSA) Bureau of Primary Health Care National Hansen’s Disease Programs

2. Why treat leprosy? Not fatal Not highly contagious Disabling Frightening: Public hysteria

3. GOAL: Prevent or arrest the Trajectory of Disability Damage Disability Deformity NERVE DAMAGE 0 Chemotherapy of Leprosy is VERY Effective MDT Early Dx Early Rx

4. THE NATIONAL HANSEN’S DISEASE PROGRAMS Baton Rouge, LA Worldwide recognition as the center of excellence in: Treatment and management Rehabilitation Research Training Formerly known as Carville

5. 1.Consider the diagnosis 2.Confirm diagnosis by biopsy to NHDP 3.Manage HD with NHDP support 4.Referral for complications not manageable locally The Need for HD Awareness: Most HD problems in the USA result from one fact – it is a rare disease here *

6. Hansen’s Disease (Leprosy)  Chronic infection of Skin and Nerves  Diagnosis – biopsy No ‘blood tests’, no skin tests

7. Hansen’s Disease (Leprosy) Caused by M. leprae – Non-cultivable – VERY slow growing – Infects nerves Long incubation – 3 -7 yrs... may be 10 - 20 yrs Hard to “catch”  Chronic infection of Skin and Nerves  Diagnosis – biopsy No ‘blood tests’, no skin tests

8. Position in the spectrum: * Treatment * Prognosis Quality Control

9. Incubation Period of 3 – 8 or 10 years 95% population thought resistant Spontaneous Self-healing No Early Diagnostic Techniques Inability to Culture M. leprae Stigma for Reporting Understanding Leprosy Transmission: Confounding factors PATHOGEN SUSCEPTIBLE HOST ENVIRONMENTAL FACTORS DISEASE TRIANGLE CONCEPT

10. Portal of EXIT? – Nasal involvement is apparent in many clinical cases – Large numbers of organisms are shed by sneezing M. leprae not very robust between hosts Portal of ENTRY? – Empirical and experimental evidence Entry by nasal mucosa Entry though broken / abraded skin Transmission of Leprosy

11. # New Cases of Leprosy in U.S. 1999 88* 2000 76* 2001110 2002133 2003134 2004131 2005161 2006137 2007157 2008150 * Low likely due to NHDP transition from Carville to Baton rouge Last 30 years 7115 total cases 6500 alive based on average life span of 78 years Currently 3412 receiving treatment 2888 in 11 ACP Clinics 524 by private practice physicians

12. Figure 1. U.S. Reported HD Cases by Year

13. Figure 3. 10 Year Cumulative Summary of U.S. HD Cases by Reporting State

14. Figure 7. 2008 and Ten Year Cumulative Summary of U.S. HD Cases by Age

15. Outpatient Hansen’s Disease Clinics PhoenixPhoenix San Juan MiamiMiami BostonBoston New York ChicagoChicago SeattleSeattle San Diego Los Angeles MartinezMartinez DallasDallas HarlingenHarlingen San Antonio AustinAustin HoustonHouston Baton Rouge

16. CT-12 DC-5 MA-7 MD-7 NYC-9 LA-76 NJ-7 U.S. Private Sector Physicians Managing at Least 1 Case of Hansen’s Disease 504 private sector Physicians managing 524 patients 504 private sector Physicians managing 524 patients

17. The Armadillo:  Core temperature 34 o C  Production of M. leprae  Model for human leprosy  Transmission to man?

18. Indigenous US Leprosy

19. High prevalence in armadillos 15-25% Human & Armadillo Leprosy

20. 111111111 11 1 1 1 11 1 1 1 11 1 1 11 1 1 1 11 1 1 1 11 1 1 1 111 2 22 2 2 2 22 2 2 22 2 2 2 22 2 2 2 22 2 2 2 22 2 66 6 6 6 66 6 6 1 11 1 1 1 11 1 222222222 3 33 3 3 3 333 29 1 11 1 1 1 111 5 55 5 5 5 55 5 6 66 6 6 6 66 6 7 77 7 7 7 777 33 3 3 3 33 3 3 44 4 4 4 44 4 4 24 27 34 33 3 3 3 33 3 3 22 2 2 2 22 2 2 25 H *** W TN Br4923 * * * * * * * * * * * * * Figure 3. Minimum spanning tree based on SNPs and VNTRs Truman et al 2011 New Engl. J Med 364: 1626-1633. W NHDP-98 NHDP-10,55&63 I-30 28 W 1A 3L 1D 3I-1 3I-2 4P 3K SNP Subtype 2 2 2 LWM26 43926 Thai53 1 *

21. We have two ‘new Marshall Island atolls’ in the United States: – Hawaii – NW Arkansas Compacts of Free Association (CoFA) Reparations for H Bombs Citizens freely enter, SS #, live, work in U.S Not immigrants, migrants ~1000 migrate to U.S. / yr Not eligible for healthcare benefits

22. 22

25. Leprosy in the FSM and RMI Woodall, et al, in press Emerg. Infect. Dis. 2011

26. Woodall, et al, in press Emerg. Infect. Dis. 2011

27. 0-5 6-10 11-15 16-20 MicronesianMarshallese Woodall, et al, in press Emerg. Infect. Dis. 2011

28. ? 8 new cases Since 10/09 Leprosy Disease in Arkansas … UPDATE

29. HANSEN’S DISEASE IN THE MICRONESIAN REGION: EPIDEMIC CURVE Nauru (another Micronesian nation) – leprosy introduced 1911 1920 flu epidemic killed 30% of the population and all but 1 HD case 1943 during WWII the Japanese navy killed all active cases transmission of the epidemic from Nauru to Kapingamarangi, another previously unexposed island, illustrates the prolonged, inexorable course of a leprosy epidemic.

30. Hansen’s Disease among Marshallese in the United States Increasing number of Marshallese patients in US, raising serious concern at NHDP and in several states Almost all of these patients report prior HD treatment before leaving RMI; – All known prior treatment has been incomplete All have very advanced disease, no early cases, many complications; – epidemiologically it is clear that there are many more cases – serious under-detection in general Men >> women, more than usual in HD women are probably under-reported All cases are adults – Children are under-reported Demographic evidence indicates that the Marshallese community in US mirrors that in RMI

31. Contact Information David M. Scollard, M.D., Ph.D dscollard@hrsa.gov National Hansen’s Disease Programs 1770 Physicians Park Drive Baton Rouge, LA 70816 1-800-642-2477 www.hrsa.gov/hansens