Hepatitis C Empowerment Groups in Methadone Programs: Support, Education, Advocacy

1. HEPATITIS C VIRUS EMPOWERMENT GROUPS IN METHADONE MAINTENANCE TREATMENT PROGRAMS:SUPPORTEDUCATIONADVOCACY Alain Litwin, MD, MPH Irene Soloway, RPA Frank Medina, Peer Educator October 19, 2004

2. 4 million people in the United States are infected with the hepatitis C virus (HCV)

3. Sources of Infection for Persons with Hepatitis C Injecting drug use 60% Sexual 15% Transfusion 10% (before screening) Other* 5% Unknown 10% *In a medical setting; healthcare work; perinatal Source: Centers for Disease Control and Prevention

4. 65%-84% of methadone- maintained patients are infected with HCV

5. Future HCV Disease Burdenin the United States

6. Predictions 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

7. 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.

8. Integrating HCV care with MMT at AECOM/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)

9. On-site HCV Treatment at AECOM/Montefiore MMTP MMTP Site: Article 28 facility Scant medical infrastructure Staff: Internist or FP, PA Part-time psychiatrist Counselors, HIV Coordinators, nursing, SW Services: Opioid agonist therapy Comprehensive on-site 1º care General, HIV, HCV, Gyn Psych evaluation and tx Support group Laboratory testing, EKG Urine toxicology testing Hospital Hepatologist Interventional radiologist Pathologist EST, optho, etc. Lab

10. Albert Einstein College of Medicine Division of Substance Abuse 2003 Death Certificate Data(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

11. Hepatitis C StartSupport / Empowerment Groups

12. 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.”

13. Education 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.

14. Support

15. Advocacy 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

16. From Florida to New York City…Becoming a hepatitis c support group member

18. What the Support Group has meant to me Empowerment, education, motivation. A voice within my own community

19. Evolution of a Support Group

20. HUB 1 Hepatitis Meeting 1: COMMON QUESTIONS ABOUT HEPATITIS Irene 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.

21. HUB 1 Hepatitis Meeting 1: 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 COMMON QUESTIONS ABOUT HEPATITIS (cont.) Irene Soloway Physician Assistant Hub 1

22. HUB 1 Hepatitis Meeting 1: COMMON QUESTIONS ABOUT HEPATITIS (cont.) Irene Soloway Physician Assistant Hub 1 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. COMMON QUESTIONS ABOUT HEPATITIS (cont.) Irene Soloway Physician Assistant Hub 1

23. HUB 1 Hepatitis Meeting 1: COMMON QUESTIONS ABOUT HEPATITIS (cont.) Irene Soloway Physician Assistant Hub 1 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. COMMON QUESTIONS ABOUT HEPATITIS (cont.) Irene Soloway Physician Assistant Hub 1

24. HUB 1 Hepatitis Meeting 1: COMMON QUESTIONS ABOUT HEPATITIS (cont.) Irene Soloway Physician Assistant Hub 1 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. COMMON QUESTIONS ABOUT HEPATITIS (cont.) Irene Soloway Physician Assistant Hub 1

25. FIRST GROUP

26. Starting with the Clinical Relationship Inform patients who are concerned about their hepatitis status about the support group as soon as the first medical visit.

27. Identify Core Leadership • Every 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.

28. Location / Food

29. Create interesting flyers to promote meetings. 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

30. HUB TRIPLEX HEPATITIS C SUPPORT GROUP MEETING MONDAY JUNE 21 12 PM-1 PM HUB 1 BASEMENT ALL ARE WELCOME TOPIC: METHADONE AND HEPATITIS: MYTHS AND REALITIES:

31. HUB TRIPLEX HEPATITIS C MEETING MONDAY APRIL 19 12 -2 PM HUB 1 CONFERENCE ROOM TOPIC: ALCOHOL AND THE LIVER FIGHT BACK AGAINST THE HCV EPIDEMIC ALL ARE WELCOME

32. Galvanizing Event

33. IMPORTANT MEETINGMonday 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

34. Group Identity Formed

35. Starting Hepatitis C Support Groups: Useful 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

36. Starting Hepatitis C Support Groups: Useful Organizing Principles • Share responsibility with core leaders • Link individual success to group goals • Link group goals to administrative goals • Consider all administrative issues

37. Starting Hepatitis C Support Groups: Useful Organizing Principles • 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

38. Sustaining a Support Group Newsletters and the media can be important

39. PEER EDUCATION: A NATURAL OUTGROWTH OF SUPPORT GROUP

40. 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

41. 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

42. 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 GRADUATION 2:30 PM HEP C QUESTIONS AND ANSWERS REFRESHMENTS WILL BE SERVED

43. PEER EDUCATION: Group Members Come to Believe in their Expertise

44. IMPLEMENTATION OF PEER EDUCATION • Stipends for educators -$20 per peer + transportation • Documentation: attendance records • Feedback from peer educators and host

45. IMPLEMENTATION OF PEER EDUCATION • Peers go out in pairs • Props (plastic liver) and literature • Peers educate both staff and patients

46. Peer Program (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)

47. “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

48. Peer Educators Motivated to Care 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)

49. Peer Educators Motivated to Care for Themselves • Renewed focus on recovery • Active users take steps towards abstinence and sustained recovery • Renewed focus on relapse prevention

50. Peer Educators Motivate Others • 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