Awareness and Management of

Leprosy in the U.S.

USPHS MeetingNew 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 CareNational Hansen’s Disease Programs

Why treat leprosy?

• Not fatal• Not highly contagious

• Disabling• Frightening: Public hysteria

GOAL:Prevent or arrest the Trajectory of Disability

Damage

Disability

Deformity

NER

VE D

AMAG

E

0

Chemotherapy ofLeprosy is VERYEffective

MDT

Early DxEarly Rx

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

1. Consider the diagnosis

2. Confirm diagnosis by biopsy to NHDP

3. Manage HD with NHDP support4. 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

*

Hansen’s Disease (Leprosy)

Chronic infection of Skin and Nerves Diagnosis – biopsy

No ‘blood tests’, no skin tests

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

Position in the spectrum: * Treatment

* PrognosisQuality Control

• 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

PATH

OGEN

SUSCEPTIBLE HOST

ENVIRONMENTAL

FACTORSDISEASETRIANGLE CONCEPT

• 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

# 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

United States Reported Hansen's Disease Cases by Year1978-2008

Cases

0

100

200

300

400

500

Year

1978 1983 1988 1993 1998 2003 2008

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

10 Year Case Averages by State

Average Cases per Year .1 to 1.5 1.6 to 3.0 3.1 to 5.05.1 to 10 10.1 to 15 20.1 to 30

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

Age Group Percentages: 2008 and 10 Year

YearGroup=10yr

<162.75%

16 to 3023.46%

31 to 4528.16%

>4545.63%

YearGroup=2008

<165.33%

16 to 3031.33%

31 to 4523.33%

>4540.00%

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

Outpatient Hansen’s Disease Clinics

Phoenix

San JuanMiami

Boston

New York

Chicago

Seattle

San Diego

Los Angeles

Martinez

Dallas

Harlingen

San Antonio

Austin

Houston

Baton Rouge

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

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

Indigenous US Leprosy

St. Mark's 0%

Lawton < 1%

Corpus Christi 18%

Tallulah 24%

Atchafalaya 16%

Woodville 5%Kisatchie 8%

Carville 11%Lacassine 19%

High prevalence in armadillos 15-25%

Human & Armadillo Leprosy

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*Figure 3. Minimum spanning tree based on SNPs and VNTRs

Truman et al 2011 New Engl. J Med 364: 1626-1633.

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NHDP-98

NHDP-10,55&63

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3L1D

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SNP Subtype

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LWM26

43926 Thai531 *

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

Leprosy in the FSM and RMIWoodall, et al, in pressEmerg. Infect. Dis. 2011

Woodall, et al, in pressEmerg. Infect. Dis. 2011

0-56-1011-1516-20

Micronesian Marshallese

Woodall, et al, in pressEmerg. Infect. Dis. 2011

?

8 new casesSince 10/09

Leprosy Disease in Arkansas … UPDATE

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.

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

Contact Information

David M. Scollard, M.D., Ph.Ddscollard@hrsa.gov

National Hansen’s Disease Programs1770 Physicians Park Drive

Baton Rouge, LA 708161-800-642-2477

www.hrsa.gov/hansens