Beyond Tested, Cured. Formative Research with Active Drug Users.

1. DEVELOPING HCV EDUCATION WITH
PEOPLE WHO INJECT DRUGS
From Interviews and Focus Groups to
Social Marketing Messaging
Louise Vincent, MPH
Director
North Carolina Chapter
Urban Survivors Union

2. Urban Survivors Union
The Urban Survivors Union (USU) is a community organization
providing direct health services to people who use drugs
(PWUD). We work with communities to improve individual and
public health by engaging people who use drugs and their friends
and family. Our goal is to move people from passive recipients of
health services to active service providers who care for
themselves and their communities. We focus on community
health, community organizing and mobilization, education and
advocacy.

3. USU’s Community Response to the HCV Epidemic
 Community Led and Directed Services for people who use drugs (PWUD)
 Drop-in center
 Syringe Exchange (Newly legal in the North Carolina)
 OD prevention with naloxone
 Community Based Advocacy and Community Mobilization
 USU is the only drug user union in the US South
 Groups in NC: Greensboro, High Point, Raleigh, Charlotte, and Asheville
 Outside NC: Seattle, San Francisco
 Community Based Research- Participatory Action Research
 Collaborations with public health researchers
 PWUD participating in every stage of the research process.

4. Problem: HepC messaging is often not
based on PWID’s health needs
This community-administered project will:
 Describe how PWID acquire information of HCV risk factors
and HCV treatment
 Determine the process people use to gauge transmission
risk and reduce unsafe injecting behaviors
 Identify challenges and barriers to staying HepC free
 Clarify how peer relationships and PWID social networks
increase and decrease HCV infection risk

5. Research
Process for
USU Team
Research
Questions
Analysis
Designing a
process
Communicating
messages/
Dissemination
How do we improve HCV-related health outcomes for PWID?

6. Survey to assess knowledge and attitudes
around HCV behavioral risk and treatment
N=126
RACE
81% White
13% Black
2% Asian
3% Mixed
1% Other
64%
33%
2%
1%
Gender
Male Female Trans Non Binary

7. Survey Results
■ 28% believed HCV infection can occur by reusing one’s
own injection equipment.
■ 32% believe being sanitary and washing hands can
prevent hepatitis C
■ 53% reported not wanting to be in an intimate
relationship with an HCV-infected person
■ 86% believe strongly that HCV infection can occur via
unprotected sex

8. Syringe Access in NC
 Syringe exchange was made legal in in
NC in July of 2016.
 USU administered clandestine syringe
exchange services from 2008- until
legalization.
 There are now 18 legal exchanges in
NC.
Survey Finding
96% of respondents reported
they would reuse used injection
equipment if there was no
syringe exchange

9. FOCUS GROUPS & IN-
DEPTH INTERVIEWS
People who inject drugs
(n=8)
Women who inject drugs
(n=6)
People using stimulants
(n=12)

10. Focus Groups
 All focus groups were conducted with at least 1 person who actively
uses drugs†
 Each group had 2 facilitators and at least 1 note taker, a health
educator to provide HCV training, and a technology expert.
 Groups were audio recorded
 Focus group trainings were provided to facilitators and a guide was
provided to ensure consistency and continuity.
 At the close of each focus group, we reviewed and evaluated our
performance and the performance of our peers.
†95% of facilitators and volunteers are people actively using drugs.

11. General Focus Group Findings
■ Syringe exchange is vital for the health and well being of PWUD. Each group came
to this conclusion. Participants were deeply grateful for our harm reduction center
and felt like it was a great benefit to their health.
■ Wide confusion over new all-oral HCV treatments
■ Confusion over how HCV infection is spread, treated and whether there is a cure
■ Frustration over not being able to care for self even when they wanted very much to
take care of their health.
■ Frustration regarding the lack of information received over the years; even after
being exposed to treatment, jail, prison, and other mandatory programs.
■ No trust in medical system; no desire to go to doctor even when they know they
need to.
■ Unemployment affects ability to go to doctor; long-term lack of health insurance
■ Medicaid impossible to get; Medicare and Disability also impossible to access;
most participants diagnosed with mental health issues, yet have no access to
medication or evidence-based treatment. Doctors at county-run clinics refuse to
prescribe medication that actually has any effect or benefit.

12. HEALTH IN
THE
PIEDMONT
WHERE DO PEOPLE WHO USE DRUGS
ACQUIRE HEALTH-RELATED INFORMATION?
■ INTERNET
■ PHARMACUTICAL COMMERCIALS
■ FRIENDS
■ THE PIEDMONT XCHNAGE ☺
■ METHADONE CLINIC
■ DRUG TREATMENT PROGRAMS
■ PARENTS & FAMILY
■ 12 STEP MEETINGS
■ SCHOOL

13. Findings: Women Who Inject Drugs
 Veins – struggle to inject self
 Living in an underground economy and inability to deal with abuse
 Not having control of injection supplies and drugs
 Need to letting others inject them
 Not wanting track marks to show
 Fear of going to doctor or treatment due to children
 Not able to talk to anyone about drug use- social services involvement
 Isolation; feeling stuck
 Doing what you have to do to take care of family; kids have to be taken
care of; you do whatever it takes
 Self-hatred
 No way to stop using drugs without making things worse
 Not able to take care of self; to worried about taking care of everybody else

14. Findings: Stimulant Users
■ Confusion over how HCV infection is acquired.
■ No real understanding on how increasing injecting increases HCV risk.
■ No real understanding why staying up for days increases health risks. After
some discussion it made sense to everyone in the group but none of them
had ever thought about how their risk was increased by their stimulant use.
■ Women all complained about inability to inject themselves; report trying
unsuccessfully for hours. Described conditions as becoming quite messy
and bloody. Described frustration leading to loss of desire to be careful,
■ Adderall prescriptions helped control cocaine use but most doctors will not
prescribe amphetamines to patients they know use illicit stimulants
■ Stimulants increase sex drive and this increases risk. Reports of having sex
for extended periods of time due to uppers)

15. Social
Marketing
Messages
Engage
people who
inject drugs
(PWID)
PWID
acquire
useful
information
to stay
healthy
Health
promotion
increased
among
PWID
population
Reduced
HCV
incidence
HCV
elimination
now
possible

16. Beyond Tested, Cured!
A Social Marketing Campaign Delivered by USU
Increase connections to bring in people instead pushing them out!

17. Active engagement in health advocacy with others has
been demonstrated to sustain one's own healthy
behavior and to maintain one's own reduced risk
(Ramirez-Valles, 2002).
Directly Impacted health educators (peers) used this
community outreach activity as a mechanism to support
their own individual level ,drug use and their exposure to
multiple health risks in their environment (Dickson-
Gomez et al., 2006).

18. Use Your Local Syringe Exchange

19. We would like people who
use drugs to use their local
syringe exchange to get
education about new treatment
for HCV infection: it is very effective
with very few side effects
People who use drugs want
to be healthy and have
access to the most up to
date information about Hep
C, a disease that affects so
many people who inject
drugs.

21. Get Educated
Get Tested
Get Cured
Leave HepC Behind
Use your local Xchange
&

22. Hep C, Not My Reality Exchange Now—Exchange for Life

23. Marketing for Women Who Inject Drugs
■ Women who use drugs can share love and care for partner in a way
that is mutually respectful
■ Social Marketing Message: Improves women’s ability to care for self.
Feelings of empowerment; able to act on own behalf.
■ Women learn to inject and care for their own drug-related needs
■ Empowerment to protect oneself.
■ Women do not share injection supplies with partner and do not allow
others to inject them
■ Reduced HCV rates among women

24. DO IT LIKE A PRO
HEP C FREE MY REALITY

31. Use your local syringe exchange. Exchange for Health.