hepatitis c virus empowerment groups in methadone

Alain Litwin, MD, MPHAlain Litwin, MD, MPHIrene Soloway, RPAIrene Soloway, RPA

Frank Medina, Peer Educator Frank Medina, Peer Educator

October 19, 2004October 19, 2004

HEPATITIS C VIRUS HEPATITIS C VIRUS EMPOWERMENT GROUPS IN EMPOWERMENT GROUPS IN

METHADONE MAINTENANCE TREATMENT PROGRAMSMETHADONE MAINTENANCE TREATMENT PROGRAMS:

SUPPORTSUPPORTEDUCATIONEDUCATIONADVOCACYADVOCACY

4 million people4 million people

in the United States are infectedin the United States are infected

with the hepatitis C viruswith the hepatitis C virus

(HCV)(HCV)

Sources of Infection for Sources of Infection for Persons with Hepatitis CPersons with Hepatitis C

Sexual 15%

Other* 5%

Unknown 10%

Injecting drug use 60%

Transfusion 10%(before screening)

*In a medical setting; healthcare work; perinatal

Source: Centers for Disease Control and Prevention

65%-84% of methadone- 65%-84% of methadone- maintained patients are infected maintained patients are infected

with HCVwith HCV

Future HCV Disease BurdenFuture HCV Disease Burdenin the United Statesin the United States

528%

279%

223%

68%

61%

0% 100% 200% 300% 400% 500% 600%

Estimated % increase by year 2008

Cirrhosis

HCC

Liver-related deaths

Decompensation

Need for liver transplantation

Predictions for 2010-2019Predictions for 2010-2019

•193,000 HCV deaths–1.83 million years of life lost

•$11 billion in direct medical care costs

•$21.3 and $54 billion societal costs from premature disability and mortality

NIH Consensus Statement, 2002

• Recent, albeit limited, experience has demonstrated the feasibility and effectiveness of treating chronic hepatitis C in people who use illicit injection drugs, known as injection drug users (IDUs).

• Management of HCV-infected IDUs is enhanced by linking these patients to drug treatment programs.

• Methadone treatment has been shown to reduce risky behaviors that can spread HCV infection, and it is not a contraindication to HCV treatment.

• Efforts should be made to promote collaboration between experts in HCV and healthcare providers specializing in substance-abuse treatment.

• HCV therapy has been successful even when the patients have not abstained from continued drug or alcohol use or are on daily methadone.

• However, few data are available on HCV treatment in active IDUs who are not in drug treatment programs. Thus, it is recommended that treatment of active injection drug use be considered on a case-by-case basis, and that active injection drug use in and of itself not be used to exclude such patients from antiviral therapy.

Integrating HCV care with MMT at Integrating HCV care with MMT at AECOM/MontefioreAECOM/Montefiore

• Network of community-sited MMT programs in the Bronx, NY

• Comprehensive on-site primary care

• 4300 patients– 59% Latino/a, 23% African-American, 18% Caucasian– Mean methadone dose: 90 mg– 65-75% (2800) HCV Antibody positive– 56% chronic HCV infection (detectable HCV-PCR)

On-site HCV Treatment at AECOM/Montefiore MMTP

MMTP

Site: Article 28 facilityScant medical infrastructure

Staff: Internist or FP, PAPart-time psychiatristCounselors, HIV Coordinators,nursing, SW

Services: Opioid agonist therapyComprehensive on-site 1º care

General, HIV, HCV, GynPsych evaluation and txSupport group Laboratory testing, EKGUrine toxicology testing

HospitalHepatologistInterventional radiologistPathologistEST, optho, etc.

Lab

Albert Einstein College of Medicine Albert Einstein College of Medicine Division of Substance Abuse Division of Substance Abuse 2003 Death Certificate Data2003 Death Certificate Data

(81 deaths)(81 deaths)

• 25% (20 patients) died from HCV with end-stage liver disease

• 21% (17 patients) died from unknown causes

• 6% (5 patients) died from HIV/AIDS related complications

Hepatitis C Hepatitis C

StartStartSupport / Empowerment GroupsSupport / Empowerment Groups

South Bronx Support Group

“We represent a coalition of patients, providers, family members and friends: all affected by the hepatitis C epidemic in our South Bronx Community.”

“People in methadone maintenance must have access to hepatitis C resources. We work to ensure that current and former drug users have access to treatment for both substance abuse and hepatitis C.”

EducationEducation

Support groups specifically allow patients to educate each other about HCV infection, the steps involved in pre-treatment evaluation of HCV, and the management of side effects during HCV treatment.

SupportSupport

AdvocacyAdvocacy

We the undersigned support the goals of the South Bronx Hepatitis C education, advocacy and support group in their advocacy for Medicaid reimbursement for hepatitis C PCR and genotype testing.

Name Address Phone Contact

From Florida to New York City…

Becoming a hepatitis c support group member

What the Support Group has meant to meWhat the Support Group has meant to me

Empowerment, education, motivation. A voice within my own community

Evolution of aEvolution of a

Support GroupSupport Group

HUB 1 Hepatitis Meeting 1:

COMMON QUESTIONS ABOUT HEPATITISIrene Soloway Physician Assistant Hub 1

What is hepatitis?

Hepatitis is an inflammatory condition of the liver. It can be caused by bacterial or viral infection, fat buildup in the liver, drugs, alcohol, toxins, and other causes. Most hepatitis is caused by viruses that invade the liver cells. They take over the liver cells and can cause damage that impairs liver function.


COMMON QUESTIONS ABOUT HEPATITIS (cont.)Irene Soloway Physician Assistant Hub 1

Acute hepatitis: an infection that lasts less than 6 months and that your body can get rid of

Chronic hepatitis: an infection that stays in your body and needs medical treatment to eliminate it

Fibrosis: scarring that occurs as the liver attempts to repair itself

Cirrhosis: when all the scar tissue formed from the constant repairing process is connected together, making the liver smaller and harder. Blood is not able to freely flow through the liver, and eventually the liver cannot function normally




Which is the worst hepatitis?

There are 6 different hepatitis viruses: A, B, C, D, E and G. Hepatitis A and B are most likely to cause symptoms, and chronic hepatitis B and C are the most likely to cause long term health problems. D, E, and G are quite rare

Hepatitis B is more common and contagious than HIV. It is spread through contact with infected blood, and through sexual contact. However, most people who get infected will fight off the infection. There is a vaccine to protect your from getting hepatitis B if you have not already been exposed.




Hepatitis C is the most common. Almost 5 million Americans have been exposed to hepatitis C. over 80% of people who have used IV drugs have chronic hepatitis C. Hepatitis C is spread by blood to blood contact, including blood transfusions before 1992, body piercing, knife fights, tattooing, and IV drug use. Even sharing straws while sniffing cocaine or heroin can be a risk factor. The risk of getting hepatitis C from sex is very low, unless you have multiple sexual partners and STDs. There is no vaccine at this time to protect you from it.




If I have hepatitis C, am I going to die?

Hepatitis C is a slow acting virus, and it usually takes 20-30 years to progress to cirrhosis and liver failure. Symptoms do not show up for years. Many people who have hepatitis C will live out their life spans without ever getting sick from it. However, at least 2 out of 10 people will get cirrhosis and have greater risk of complications or death. People who have a history of heavy drinking or HIV usually have a faster disease progression.


FIRST GROUPFIRST GROUP

Starting with Starting with the Clinical Relationshipthe Clinical Relationship

Inform patients who are concerned about their hepatitis status about the support group as soon as the first medical visit.

Identify Core LeadershipIdentify Core LeadershipEvery clinic has patients who have

leadership ability. Some are already recognized as leaders

(e.g pac committee leaders). Others will emerge in the course of

meetings.These leaders should be acknowledged

for their work, thus motivating others to step forward in leadership roles. A culture of self help and education is developed.

Location / FoodLocation / Food

HUB TRIPLEX Hepatitis Group

MEETING All Hub 1, Hub 2 and Hub 3 Clients Welco

WHEN: February 3 12 pm-2 pm

WHERE: PIZZA RESTAURANT 448 E. 149TH ST

(WALK TOWARDS ST ANN’S, RESTAURANT IS BETWEEN BERGEN AND

BROOK, ACROSS FROM PARKING LOT)

TOPIC: HEPATITIS C TRANSMISSION

A COMMUNITY DISCUSSION

Create interesting flyers to promote meetings.

HUB TRIPLEX HEPATITIS C

SUPPORT GROUP MEETINGMONDAY JUNE 21

12 PM-1 PMHUB 1 BASEMENT

ALL ARE WELCOMETOPIC: METHADONE AND HEPATITIS: MYTHS

AND REALITIES:

HUB TRIPLEX HEPATITIS C MEETINGMONDAY APRIL 19 12 -2 PM

HUB 1 CONFERENCE ROOM

TOPIC: ALCOHOL AND THE LIVERFIGHT BACK AGAINST THE HCV EPIDEMIC

ALL ARE WELCOME

Galvanizing EventGalvanizing Event

IMPORTANT MEETING Monday May 20 at 11:30 !!!!

AMERICAN LIVER FOUNDATION WALKATHON 1) registration/sponsor $$$

2) telephone tree 3) the banner

4) the walk5) the movie6) the party

Group Identity FormedGroup Identity Formed

Del

Sur

del

Bro

nx

en movimiento

Albert Einstein

School of Medicine

Starting Hepatitis C Support Groups: Starting Hepatitis C Support Groups: Useful Organizing PrinciplesUseful Organizing Principles

• Become an expert on hepatitis C at your clinic (even if you aren’t one)

• Raise awareness of hepatitis C issues clinic wide

- annuals/clinic visits/treatment plans

- pamphlets (literature rack)

- staff meetings

- articles

- grand rounds


• Share responsibility with core leaders

• Link individual success to group goals

• Link group goals to administrative goals

• Consider all administrative issues


• Create a galvanizing event

• Make sure every meeting is an event

• Invite special guests– Medical students / residents– Medical experts– Harm reduction workers– Local health department

• Document everything

Sustaining a Support GroupSustaining a Support GroupSustaining a Support GroupSustaining a Support Group

Newsletters and the media can be important

PEER EDUCATION: A NATURAL OUTGROWTH OF SUPPORT

GROUP

FORMAL TRAINING OF PEER EDUCATORS

• HCV Empowerment Groups are the foundation of formal peer education program

• 3 classroom sessions (2 hours each)

-1st 2 sessions included informal written pre and post-test (P/PEGS)

-final session included role playing with feedback, and a written final exam

Role Playing• 2 Peer Educator students facilitate a 10-minute group

session in front of peers and staff

-Practice Introductions

-Deliver basic HCV knowledge-Practice responding to difficult questions

• Formal Feedback-Peers identify own strengths/weaknesses-Staff/peers identify strengths/weaknesses

• Practice ongoing facilitation and knowledge skills in our own monthly HCV Empowerment Group

MEET HEPATITIS C PEER EDUCATORS FROM THE HUB’S

“BRONX LIVERATORS” HEP C GROUP

KNOWLEDGE IS POWER: FIGHT BACK AGAINST THE HCV EPIDEMIC WHERE: CD SOUTH CONFERENCE ROOM

WHEN: TODAY!!!!!! THURSDAY MARCH 11

2:00 PM PEER EDUCATION GRADUATION2:30 PM HEP C QUESTIONS AND ANSWERS REFRESHMENTS WILL BE SERVED

PEER EDUCATION: Group Members Come to Believe in

their Expertise

IMPLEMENTATION OF PEER EDUCATION

• Stipends for educators-$20 per peer + transportation

• Documentation: attendance records

• Feedback from peer educators and host

•

IMPLEMENTATION OF PEER EDUCATION

• Peers go out in pairs

• Props (plastic liver) and literature

• Peers educate both staff and patients

Peer Program Peer Program (2/2004-10/2004)(2/2004-10/2004)

• 35 sessions usually led by 2 peer educators

-22 at 8 DoSA sites

-11 at SEP outreach site

-2 at outside sites• Approximately 250 patients and 30 staff

members reached• 14 peer educators graduated (10 have

led sessions to this date)

“The peer educators are outspoken, knowledgeable and motivated to provide information to their peers. They motivated the group with self-disclosures, encouraged follow-up with primary care provider and offered support. The group had many questions about transmission, symptoms, treatment process and effects of medications. The peer educators are very well informed and are able to relate their message clearly and simply to patients and staff. Personally, I am amazed by their presentations and I believe that this is extremely important to the community”

Substance Abuse Counselor / Relapse Prevention Group Facilitator

Peer Educators Motivated to Peer Educators Motivated to Care for ThemselvesCare for Themselves

14 Peer Educators• 13 HCV Ab+ (all HCV PCR+)• 9 underwent liver biopsy

(1 not treated due to mild liver disease; 7 treated due moderate/advanced liver disease; 1 NASH)

• 5 with cirrhosis (including 2 decompensated)• 10 initiated HCV antiviral treatment• Overall, good responses to treatment

– 5 sustained viral responses (SVR) including 2 HIV/HCV – 2 end of treatment responses (ETR): awaiting SVR– 1 6-month EVR – 1 recently initiated treatment– Only 1 did not tolerate antiviral treatment (HIV/HCV)

Peer Educators Motivated to Peer Educators Motivated to Care for ThemselvesCare for Themselves

• Renewed focus on recovery

• Active users take steps towards abstinence and sustained recovery

• Renewed focus on relapse prevention

Peer Educators Motivate Peer Educators Motivate OthersOthers

• Patients learn about basic HCV knowledge and evaluation process

• Patients motivated to focus on addiction treatment and recovery

• Patients motivated to undergo various steps of HCV evaluation and treatment process– Establish diagnosis– Liver Biopsy– Initiate HCV Treatment

Where do we go from here?

• Formally study outcomes of HCV empowerment groups and peer education programs

• Expand HCV support / empowerment groups and peer education programs

• Continue to build bridges to hepatitis C treatment through advocacy

• Continue to educate providers to break down barriers

Patient Literaturehttp://www.ci.nyc.ny.us/html/doh/home.htmlNYC DOH (brochures on website)

www.cdc.gov (also www.cdc.gov/idu)

www.natap.org

www.harmreduction.org(Harm Reduction Coalition)

http://www.lola-national.org(Latino Organization for Liver Awareness)

www.hcvadvocate.org

http://www.liverfoundation.org/order_form.pdf(American Liver Foundation charges 0.75 for single copies and $20 for 100 copies)

http://www.cdc.gov/idu

http://www.natap.org/

http://www.harmreduction.org/



http://www.lola-national.org/



http://www.hcvadvocate.org/



Provider Information

www.natap.org by Jules Levin(Get on email list for updates on HCV and HIV)

www.projectsinknowledge.com(Care and Counsel Handbook and other HCV CME)

IN-Viro advancing the study of liver disease 1-800-227-7448

http://www.uchsc.edu/mpaetc/home.htmlhttp://www.uchsc.edu/mpaetc/HIV_HCV%20pocket%20guide.pdf[Clinician’s Guide to HIV/HCV Co-infection and lots of other useful links]

hepatitis c virus empowerment groups in methadone

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