Engaging the community in the response to HIV in a

low prevalence setting - the Macedonian experience

Partnerships in HealthSarajevo

18 May 2012

Andrej SenihStronger Together – Group for Support and Self-help of

PLHIV in Macedonia, HERA – Health Education and Research Association

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

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

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?

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

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

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

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.

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.

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.

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.

FIRST NEEDS ASSESSMENT AMONG PLHIV

Interest in trainings on:

• treatment litteracy - 60%

• HIV prevention - 50%

• possible ways of self-organization of PLHIV - 50%

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

ESTABLISHMENT OF STRONGER TOGETHER

Formed at the end of 2009 - beginning of 2010 byten 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

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)

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

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

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