Awareness and Management of Leprosy in the U.S.

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

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

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

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

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

9. Understanding Leprosy Transmission: Confounding factors • 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 ENVIRONMENTAL FACTORS PATHOGEN DISEASE TRIANGLE CONCEPT SUSCEPTIBLE HOST

10. Transmission of Leprosy • 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

11. # New Cases of Leprosy in U.S. • 1999 88* • 2000 76* • 2001 110 • 2002 133 • 2003 134 • 2004 131 • 2005 161 • 2006 137 • 2007 157 • 2008 150 • * 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 Seattle Boston New York Chicago Martinez Los Angeles San Diego Phoenix Dallas Baton Rouge Austin Houston San Antonio Miami San Juan Harlingen

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

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

18. Indigenous US Leprosy

19. Lawton < 1% Tallulah 24% Woodville 5% Kisatchie 8% Atchafalaya 16% Carville 11% St. Mark's 0% Lacassine 19% Corpus Christi 18% Human & Armadillo Leprosy High prevalence in armadillos 15-25%

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

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

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

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

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