6th Regional Conference in Sarajevo, May 17-18 2012.

1. Engaging the community in the response to HIV in a
low prevalence setting - the Macedonian experience
Partnerships in Health
Sarajevo
18 May 2012
Andrej Senih
Stronger Together – Group for Support and Self-help of PLHIV in
Macedonia,
HERA – Health Education and Research Association

2. HIV IN MACEDONIA
Estimated size of population (2010): 2,052,722
Cumulative number of diagnosed cases 1987-2012 (March): 151
Reported as AIDS cases: 118
Total number of AIDS related deaths: 69
Number of people living with HIV: 82
Patients in care: 62
People receiving antiretroviral treatment: 48

3. HIV IN MACEDONIA
Sexual transmission - more than 85% of all cases
60% reported as heterosexual transmissions
28% reported as among MSM
83% male vs. 17% female
Almost 70% of all cases are people aged 20 to 39 years

4. QUESTIONS AND DOUBTS
Can this really be an accurate picture of the
epidemic?
Can we speak of a good strategy for early diagnosing
when nearly 80% of all cases have been reported with
already developed AIDS?
Is it likely that heterosexual transmission accounts
for 60% of the total number of cases when more than
80% are men?

5. LOW PREVALENCE ISSUES IN MACEDONIA
 Lack of awareness
 High stigma
 Lack of visible community of PLHIV
 Well-funded prevention programs (GFATM), but -
 Poor treatment availability

6. STIGMA in relation to TREATMENT
1. Neglecting the needs of people with HIV, including
the need of providing treatment
2. An obstacle to self-organizing initiatives of PLHIV:
 no active or visible patients’ groups to advocate
for the right to quality treatment
Reverse effect:
 absence of positive examples leaves stigma and
discrimination unchallenged

7. FIRST NEEDS ASSESSMENT AMONG PLHIV
First needs assessment among people living with HIV
conducted in 2009 by Macedonian NGO HERA – Health
Education and Research Association:
24 (69%) out of only 35 patients at the time enrolled
in medical care at the Clinic for Infectious Diseases in
Skopje participated

8. FIRST NEEDS ASSESSMENT AMONG PLHIV
• Almost half of the respondents that revealed their
HIV status, felt some form of stigma and
discrimination
• 37% of them reported discrimination by health
institutions
• 3 people whose employers found out about the HIV
status people suffered discrimination within the
workplace
• More than 90% hadn’t revealed their HIV status to
anyone but their closest family or friends.

9. FIRST NEEDS ASSESSMENT AMONG PLHIV
• 30% stated that increasing privacy when receiving a
health service at the Clinic, with the view towards
meeting other PLHIV, is crucial.
• Most PLHIV identified providing continuous ART by
the state as one of the key problems.

10. FIRST NEEDS ASSESSMENT AMONG PLHIV
However -
 Most respondents were positive about further
communication with other PLHIV and participation in
different forms of activism.
 Only 20% said they didn’t want to communicate
with other PLHIV.
 Most people stated that they would participate in
informal PLHIV groups, become members of a
community based organization of PLHIV or become
active within the existing HIV program of H.E.R.A.

11. FIRST NEEDS ASSESSMENT AMONG PLHIV
Reasons for further communication with other PLHIV:
• peer support among PLHIV – 60%
• exchange of experience and information - 40%
 60% stated that they wanted to join a support
group of PLHIV.
 60% gave an affirmative answer regarding
participation in trainings for PLHIV.

12. FIRST NEEDS ASSESSMENT AMONG PLHIV
Interest in trainings on:
• treatment litteracy - 60%
• HIV prevention - 50%
• possible ways of self-organization of PLHIV - 50%

13. FIRST NEEDS ASSESSMENT AMONG PLHIV
60% answered that they would like to be included in
the activities related to HIV/AIDS within H.E.R.A., and
the same percent would participate in the
establishment of a community based organization of
PLHIV
 Clear indication that there is readiness and interest
among PLHIV in Macedonia to get involved in a self-
help group and to participate in activities of the
Health Education and Research Association in a more
organized manner

14. ESTABLISHMENT OF STRONGER TOGETHER
Formed at the end of 2009 - beginning of 2010 by
ten people, as a working body within HERA:
- Code of Rules
- autonomous internal governance of the Group
- training and technical and administrative assistance
provided by HERA
- self-help group
- advocacy goals
- intention of becoming an independent CBO

15. STRONGER TOGETHER TODAY
Diversity of age, gender, sexual orientation, ethnic
and religious background and social conditions
18 members – the number is growing
one full-time employee and one part-time assistant
Two main fields of activities:
 peer support and counseling
 advocacy (especially treatment advocacy)

16. STRONGER TOGETHER TODAY
Advocacy focused on improving availability of
treatment and monitoring tests
Primary objective: having a sufficient set of essential
ARV medicines for first, second and third line
treatment covered by the national Health Insurance

17. STRONGER TOGETHER TODAY
 Recognized by decision makers and stakeholders in
the field of HIV, the media and the public
 Fully engaged in the national response to the
epidemic through membership in the National
Commission on HIV/AIDS and the CCM
 Several public statements, participation in the
drafting of the new national HIV/AIDS strategy, and
attracted the support of the President of the Republic
 Initial steps of parliamentary advocacy

18. CHALLENGES and FUTURE STEPS
• Still no sustainable system for providing treatment and
diagnostics in the country
• Increasing number of newly diagnosed people with HIV
• Increasing membership:
– need for new ways of organizational functioning:
establishing an independent NGO
- Finding new ways to respond to the needs of all
• More direct work with media and the public on issues
of stigma and discrimination
• Networking with other patients’ groups