Community Intervention Strategies HIV/HCV Co-infection Kathy Jensen Hep C Connection Hep C Connection - January 2003

Hep C Connection Non-profit formed in 1995 Majority of Staff and Board are infected and/or affected 1 Hep C Connection - January 2003

Patients Helping Patients “If you think you’re too small to make a difference, you haven’t been to bed with a mosquito.” -Anita Roddick 2

Mission Statement Hep C Connection helps people live with hepatitis C by providing support and education, increasing public awareness, advocating for patient services, and working to prevent future hepatitis C infection. 3

Hep C Connection Public Awareness and Prevention Support Network Education and training Peer Education for High Risk Groups HealthCare and Service Providers Support Network Hepatitis HelpLine Advocacy Newsletters Website: www.hepc-connection.org 4

Why Co-infection? CDC recommendations regarding integration of HCV into HIV HIV providers report PWA dying from hepatitis C HCV is the “hook” for getting people into HIV prevention 5

Co-infection Advisory Group Hep C Connection Colorado AIDS Project People With AIDS Coalition Kaiser Permanente ID Clinic Colorado Department of Public Health & Environment Project Safe (IDU) 6 Hep C Connection - January 2003

What is the level of knowledge in the HIV community about co-infection? Are people with HIV getting tested for hepatitis C? Are they getting HCV prevention messages? If HCV positive, are they getting information about treatment and life style changes? 7

More questions… What is the impact of living with two viruses? How can we assure that people who are co-infected make informed decisions about their care? 8

Focus Group – November 2001 14 participants Average Age: 44 Gender: all male Education: 25% High School, 75% Some College White 60% /Hispanic 40% /Afr. Am. 20% Dx with HIV: 9 years HCV: 7 years 9

Self Identified Risk Factors IDU: 25% Multiple Sex Partners: 20% Blood transfusion: 15% Sex with HCV+: 15% Tattoo: 5% Don’t know: 5% Not marked: 15% 10

Testing for Hepatitis C? “I asked about it but they couldn’t give me clear answers. I had to find out about it by myself.” “Doctors have blinders on to hep C, they only see the HIV.” “Most people will get tested if there is more awareness like bulletins, ads, newspaper stories.” 11

Lack of testing information Little to no pre test or post test counseling done at doctor’s office Testing often done in connection with hospital stay or other acute problem Clients need to know to ask for a test 12

What has been the most difficult issue since becoming co-infected? “Getting out of bed in the morning. I just don’t give a damn about anything.” 13

Many Emotional Issues: Lack of self esteem: not employed or contributing Stress Avoiding the “pity pot” Loneliness, isolation Fear of death Depression, exacerbated by treatment 14

What changes have you made since you found out that you are co-infected? Stopped or cut down alcohol: 33% Safer sex or abstinence More assertive with physicians More active in seeking information 15

How People Get By “I’m trying to get a lot of information, good reliable stuff, not just from anybody.” “Don’t give up. Find ways to make yourself happy.” “Don’t ignore it.” “Support each other.” 16

What is most important for people to know about co-infection? It can kill you Cleaning with bleach won’t protect you How easy it is to get About sexual transmission Difference between hep A, B, and C Vaccines 17

Lack of information “You really have to know so you can change your lifestyle: little things and alcohol.” “How come my doctor didn’t tell me to quit drinking? I had to do all the research myself.” 18

What are the barriers/challenges? Getting info from doctors about treatment, side effects, liver biopsy Healthcare providers saying there is nothing that can be done for HCV Expense of treatment, insurance issues 19

Opening Doors “Didn’t hear nothing about hep C. I had heard about HIV. Didn’t even think about hep C. It snuck in through the back door.” 20

How can barriers be eliminated? “Communicate with your doctor.” “Get the doctors to talk to each other.” “Ask the right questions.” “Find informed service providers.” 21

Are you more worried about your HIV or Hep C? More worried: HCV 43% As Worried 38% More Worried: HIV 21% 22

Summing up: Lack of accurate information about HCV Felt Doctors more focused on HIV than HCV Lack of info re treatment, healthy changes When informed, positive changes happen 23

More Conclusions… Transmission info missing: Sex and IDU More emotional stress Communication with health care providers More public information needed 24

What providers can do: Encourage HCV testing Vaccines for Hep A & B Harm reduction: IDU, alcohol, drugs, etc. Coaching for doctor visits Support during treatment Depression/suicide assessment Know resources 25 Hep C Connection - January 2003

Community Strategies Educational materials: clients and providers Questions to Ask Your Doctor about HIV/HCV Co-infection Fact Sheet 2002 Summit for Providers 2003 Community Dinner and Forum HIV/HCV Center of Excellence 26

More strategies Advocacy (ADAP) Physician Referral List Co-Infection Support Group Hepatitis HelpLine 27

Kathy Jensen: 720-917-3960 kjensen@hepc-connection.org For more information: Kathy Jensen: 720-917-3960 kjensen@hepc-connection.org www.hepc-connection.org 28