Epidemiology of Hepatitis C in Pennsylvania

Sameh Boktor

Charlie Howsare Pennsylvania Department of Health

C Change: A Leadership Summit on HCV Policy in

Pennsylvania May 1st, 2015

“surveillance is the neurologic system of public health that leads the public health in an effective and efficient way”

Donald Henderson (The leader of smallpox eradication in 1970s)

Surveillance of HCV in Pennsylvania

Hepatitis C is a reportable condition in Pennsylvania

Most of the hepatitis C reports received in PA NEDSS come

through Electronic Laboratory Reporting (ELR) and lack

demographic and risk information; therefore these data should be

carefully used for programmatic design and evaluation.

Only reports with acute hepatitis C diagnosis are investigated

PA NEDSS receives ~ 10,000 new cases of hepatitis C PPI annually,

however the distribution of cases has significantly changed.

“There is insufficient understanding about the extent and seriousness of this public-health problem, so inadequate public resources are being allocated to prevention, control, and surveillance programs”

0.00

20.00

40.00

60.00

80.00

100.00

120.00

2003 2004 2005 2006 2007 2008 2009 2010

Inci

denc

e (c

ases

per

100

,000

po

pula

tion)

Year

Incidence in 15-34 age group

Incidnce in other age groups

Hepatitis C PPI incidence rate among 15-34 age group vs. all other age groups, Pennsylvania, 2003 – 2010*

*PA-NEDSS data

Hepatitis C PPI reported to Pennsylvania NEDSS by age and sex, 2003*

*PA-NEDSS data

*PA-NEDSS data

Hepatitis C PPI reported to Pennsylvania NEDSS by age and sex, 2014*

Hepatitis C PPI Incidence by County Age 15-34, Pennsylvania, 2003 and 2014

*PA-NEDSS data

2003 2014

Matching PA-NEDSS STD cases against HCV cases, 2000-2014

*PA-NEDSS data

0123456789

1 to 3 4 to 7 8+

perc

ent

Times of STD infections

0.00

0.05

0.10

0.15

0.20

0.25

0.30

0.35

0.40

0.45

AGE 0 TO 12 AGE 13 TO 19 AGE 20 TO 29 AGE 30 TO 39 AGE 40 TO 49 AGE 50 ANDOLDER

0.7% 3.6%

20.5%

26.6% 30.0%

18.8%

0.0% 1.1%

9.3%

19.5%

41.8%

28.3%

Perc

ent o

f Cas

es

Age at Diagnosis

HIV WITHOUT HCV

HIV WITH HCV

Distribution of HIV With and Without HCV Co-infection Cohorts by Age, Pennsylvania, 2003-2012

0.00

0.05

0.10

0.15

0.20

0.25

0.30

0.35

0.40

0.45

0.50

MSM IDU MSM & IDU Adultheterosexual

contact

UnknownRisk factor

Perinatalexposure and

others

39.8%

10.3%

2.1%

31.5%

15.5%

0.8%

12.2%

48.8%

6.7%

22.4%

9.5%

0.1%

Perc

ent o

f Cas

es

Transmission Category

HIV WITHOUT HCV

HIV WITH HCV

Distribution of HIV With and Without HCV Co-infection Cohorts by Transmission Category, Pennsylvania, 2003 -2012

0 500 1000 1500 2000 2500 3000 3500

35-44

45-54

55-64

65-74

75-84

85+

Age specific rate

Age F

M

Total

Matching against PA Cancer registry Age specific incidence of liver cancer among NEDSS population with HCV

diagnosis, 2003 to 2010*

PA cancer registry and PA NEDSS*

0

10

20

30

40

50

60

70

80

90

100

201420132012201120102009200820072006200520042003

Ahn: Type C

Alcoholic Cirrhosis With Hepatitis C

Plm: Hepatoma (Hcc) And Cirrhosis

Plm: Hepatoma -. Hepatocellular Carcinoma

HCV related Liver transplants Performed in Pennsylvania 2003-2014*

*Organ Procurement and Transplantation Network

0

0.2

0.4

0.6

0.8

1

1.2

1.4

1.6

1.8

2

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013

Perc

ent

Year

Unadjusted percent of Hospital admissions for cases with primary or secondary hepatitis C diagnosis, Pennsylvania,

2000-2013*

* Pennsylvania Health Care Cost Containment Council (PHC4) data

Hospital visit rate among virally co-infected persons relative to mono-infected persons within the PHC4 hospital billing

database, Southeastern Pennsylvania, 1996 - 2010.

L. E. Finn et. al., CSTE conference, 2013

Conclusion

- HCV rates are increasing among adolescents and young adults,

investigating this new trend is needed to identify risk factors and

racial/ethnic groups with higher risk

- Data from additional sources are needed to help us better understand

the epidemic (such as commercial lab data, EMR, ….etc)

- Access to these data sources may need policy change

- Most of the discussed consequences of the HCV are readily preventable,

if cases are identified and linked to care early in the course of infection.

Hepatitis C Surveillance at the Philadelphia Department of Public Health

Kendra Viner, PhD, MPH

C Change: A Leadership Summit on HCV Policy in Pennsylvania

May 1st, 2015

Formation of the Hepatitis Epidemiology Program (HEP)

o 2013 – Hepatitis surveillance grant awarded • HEP investigation forms and protocols created • HEP team expanded to include a surveillance coordinator, epidemiologist, and 3 investigators (HEPIs) • A Health Alert about HEP sent to all local health care facilities. • Case investigation initiated!

o 2005– First Viral Hepatitis Prevention Coordinator • Emphasis on collaboration to align local efforts with national Action Plan

o 2012 – The Hepatitis C Allies of Philadelphia (HepCAP) formed • Mission: To team up with local HCV specialists and community members to

improve the continuum of HCV prevention, diagnosis, care and support in Philadelphia.

o 2015 – HEP now has 2 years of robust surveillance data

Hepatitis surveillance

Communicable Disease

Management System

Workflows created with a line list of patients for

each hepatitis investigator

Letter sent to newly

reported HCV+ patients and

their providers

patient and provider calls made

(4 attempts)

Field visits made, if

necessary Demographic, Clinical,

Risk Factor Information

obtained

Data entered into CDMS

Completeness of chronic confirmed HBV and HCV Investigations

o Newly identified hepatitis-infected individuals reported to PDPH each year

Fields Completeness

2012 2013 (investigated)

Demographics gender age race/ethnicity

98% 99% 8%

99% 99% 82%

Clinical HIV diabetes

1% 1%

87% 84%

Risk Factor IDU incarceration tattoo employed med/dent field health insurance

8% 8% 7% 0 0

87% 87% 87% 87% 48%

Philadelphia DPH Hepatitis Surveillance Findings

Investigated HCV cases by race: Philadelphia, 2013-2014

0 100 200 300 400 500

Hispanic

Other

Unknown

Asian/PI

White

Black

Number of Cases

• ~ 2,500 HCV Ab+ individuals newly reported to Health Dept each year

• ~50% are investigated

Investigated HCV cases by age and gender: Philadelphia, 2013-2014

Number of Cases

1

3

89

177

545

73

0 150 300 450 600

0-1

1 - 18

19 - 30

31 -44

45 - 64

>= 65

1

6

90

85

252

73

0150300450

0-1

1 - 18

19 - 30

31 -44

45 - 64

>= 65

Female

Male

Age group

0

200

400

600

800

1000

1 4 7 10 13 16 19 22 25 28 31 34 37 40 43 46 49 52 55 58 61 64 67 70 73 76 79 82 85 88 91 94

2003

0

200

400

600

800

1000

1 4 7 10 13 16 19 22 25 28 31 34 37 40 43 46 49 52 55 58 61 64 67 70 73 76 79 82 85 88 91 94

2005

0

200

400

600

800

1000

1 4 7 10 13 16 19 22 25 28 31 34 37 40 43 46 49 52 55 58 61 64 67 70 73 76 79 82 85 88 91 94

2007

0

200

400

600

800

1000

1 4 7 10 13 16 19 22 25 28 31 34 37 40 43 46 49 52 55 58 61 64 67 70 73 76 79 82 85 88 91 94

Coun

t

2009

0

200

400

600

800

1000

1 4 7 10 13 16 19 22 25 28 31 34 37 40 43 46 49 52 55 58 61 64 67 70 73 76 79 82 85 88 91 94

2011

Age

Num

ber o

f Ind

ivid

uals

A new population of young HCV cases is emerging in Philadelphia

0

200

400

600

800

1000

1 4 7 10 13 16 19 22 25 28 31 34 37 40 43 46 49 52 55 58 61 64 67 70 73 76 79 82 85 88 91

2013

Investigated HCV cases by age and risk factor: Philadelphia, 2013-2014

• Behavioral risk factors (injection drug use and incarceration) account for most of the hepatitis C cases

*Medical includes blood/organ transplants, dialysis, needlesticks, work in medical/dental field

20%

35% 21%

8%

16%

<=30 years

MedicalIDUIncarceratedSexualTattoo

16%

32% 27%

11%

14%

31-44 years

26%

26% 26%

12%

10%

45-64 years

42%

22%

19%

13% 4%

>=65 years

How is the Philadelphia DPH hepatitis surveillance data being used?

To understand patterns of HCV testing and positivity

• HCV screening may not be appropriately targeting all at-risk populations in Philadelphia

HCV Positivity HCV Testing

2012-2014

• As HCV rates increase among young IDU, there is increased risk for vertical transmission.

To understand current protocols for perinatal HCV testing in Philadelphia

• 5 - 10% of infants born to HCV-positive mothers are unable to clear the infection by 18 months of age.

• CDC recommends screening all pregnant woman with HCV risk factors.

• AASLD and ACOG recommend screening infants born to HCV(+) women for anti-HCV antibody after 18 months

• HCV treatment is approved for children ≥3 years of age.

55,623 Philadelphia Births 1/1/2011-7/1/2013

568 Births to HCV(+)

Women

5,288 HCV(+) Women 12-44

yo in Registry

31 Infants Died or

Moved 537 Infants Survived

84 Tested Infants

4 Infants Tested HCV

RNA(+)

Most HCV-positive infants are not being screened or linked to care

• Assuming a rate of 5.8%, an additional 27 infants would be expected to have developed chronic HCV infection

453 Untested Infants

5.8% of infants born to HCV(+) women

27 Infants Expected to be HCV RNA(+)

*Unpublished data – not for distribution

To assess racial disparities in disease outcomes: Philadelphia, 2003 - 2012

1,886 Liver Cancer Diagnoses N = 989

• HCV surveillance data (2003-2012) was linked to PA Cancer Registry and PA Death Certificate data on name, address and DOB.

• Cancer Registry data was limited to liver cancers (LC). • HCV outcomes were assessed by non-Hispanic black or NH

white race/ethnicity.

4,791 Philadelphia

Deaths

40,247 Chronic HCV

Cases

50

55

60

65

70

Age at HCV Age at Cancer Age at Death

Age

(yea

rs)

White - LC only

Black - LC only

There are marked disparities in age at event between NH blacks and whites

50

55

60

65

70

Age at HCV Age at Cancer Age at Death

Age

(yea

rs)

White - LC only

Black - LC only

White - LC + HCV

Black - LC + HCV

White - HCV only

Black - HCV only

14

8

5

73

Liver Disease

Drug Overdose

Cancer

Other

19

25

4

52

NH White

NH Black

• Non-Hispanic blacks die from liver cancer at a younger age than whites, while NH whites with HCV die at a younger age than blacks (likely due to ⇑ drug overdose)

*Unpublished data – not for distribution

Type of Testing

Facility

# Clients receiving HCV Ab testing, 2011 - 2014

1 Test

2 Tests

3+ Tests

Total Duplicate

Tests Est $ Lost

MATs 724 (36%) 500 (25%) 815 (39%) 2,960 $59,200

Other clinics* 8,557 (74%) 2,201 (19%) 878 (6%) 4,379 $87,580

TOTAL 9,281 2,701 1,693 7,339 $146,780

*hospitals, health centers, community based organizations

To assess HCV testing practices in Medication Assisted Treatment (MATs) centers

• Duplicate HCV Ab testing is common in Philadelphia’s MAT centers, but few clients are RNA confirmed.

47

53

23

77

RNA confirmed

Unconfirmed

MAT Centers Other clinics

Proportion of HCV-Infected Individuals Reaching Successive Stages

Total HCV Ab+ estimate

Reported HCV Ab+ estimate

Surveillance findings

0

5000

10000

15000

20000

25000

30000

HCV infected(estimate)

HCV Ab HCV RNA HCV inmedical care

HCV antiviraltreatment

Num

ber o

f Ind

ivid

uals

47%

22%

6% 3%

2010 – 2013

To provide a ‘real-life’ snapshot of how HCV is being managed in a major U.S. urban center (ie. Phila)

• HCV-positive individuals are being lost at all stages of the HCV testing, referral to care, and treatment cascade

In Conclusion

• Our data show that in Philadelphia: 1. HCV testing may not be appropriately targeted, both geographically

and demographically. 2. HCV testing is not being efficiently regulated (especially in drug

treatment centers). 3. There are profound racial disparities in age at liver cancer and death. 4. HCV is on the rise among young, white, injection-drug users. ** A very low percentage of HCV seropositive patients are getting the testing, care, and treatment they require.

• Alex Shirreffs will discuss how these issues are being addressed . . .

Improving the Cascade: Challenges of Moving from Testing toTreatment

Alex Shirreffs, MPH

C Change: A Leadership Summit on HCV Policy in Pennsylvania

May 1st, 2015

Proportion of HCV-Infected Individuals Reaching Successive Stages

Total HCV Ab+ estimate

Reported HCV Ab+ estimate

Surveillance findings

0

5000

10000

15000

20000

25000

30000

HCV infected(estimate)

HCV Ab HCV RNA HCV inmedical care

HCV antiviraltreatment

Num

ber o

f Ind

ivid

uals

47%

22%

6% 3%

2010 – 2013

Today’s Dialogue: How do we improve the cascade in PA?

Hepatitis C Screening

• Patient Attitudes • I’ve been tested… haven’t I? • I don’t need to be tested.

• Provider Attitudes • My patients aren’t at risk • I have enough to do in 20 minutes!

• Knowledge • Tools to support testing (EMR) • New screening guidelines

• Stigma • Drug use, “bad” behavior

Confirmatory Testing

• Knowledge • Testing Algorithm

• It Takes Two! • AB and RNA not always packaged

together • Resources

• Rapid Hep C Test: $20 • RNA Test: $50-$100+ • Access to Reflex testing

• Testing Policies • Rapid testing protocols • Institutional settings

• Jails, Prisons, Drug Treatment

Linkage to Care

Too many steps to get there • Challenges of navigating the systems

Knowledge • Where to refer people for hep C

care • What will insurance cover??

Resources • Support for Care Coordination

Attitudes • Everyone has it, it’s not a big deal • My doc told me not to worry • I’m just a carrier

Treatment (CURE!)

• We can treat everyone…in theory • Cost • Restrictions

• Capacity • Long process to get tx • Do we have enough clinicians to

treat everyone with hep C in PA?

• Knowledge • AASLD Guidelines

• How they get translated by different stakeholders

Proportion of HCV-Infected Individuals Reaching Successive Stages

Total HCV Ab+ estimate

Reported HCV Ab+ estimate

Surveillance findings

0

5000

10000

15000

20000

25000

30000

HCV infected(estimate)

HCV Ab HCV RNA HCV inmedical care

HCV antiviraltreatment

Num

ber o

f Ind

ivid

uals

47%

22%

6% 3%

2010 – 2013

Goes back to the issue of data and surveillance!

Once we start improving… how do we measure??