andrej senih engaging the community in the response to hiv
Engaging the community in the response to HIV in alow 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
HIV IN MACEDONIAEstimated size of population (2010): 2,052,722Cumulative number of diagnosed cases 1987-2012 (March): 151Reported as AIDS cases: 118Total number of AIDS related deaths: 69Number of people living with HIV: 82Patients in care: 62People receiving antiretroviral treatment: 48
HIV IN MACEDONIASexual transmission - more than 85% of all cases60% reported as heterosexual transmissions28% reported as among MSM83% male vs. 17% femaleAlmost 70% of all cases are people aged 20 to 39 years
QUESTIONS AND DOUBTSCan this really be an accurate picture of theepidemic?Can we speak of a good strategy for early diagnosingwhen nearly 80% of all cases have been reported withalready developed AIDS?Is it likely that heterosexual transmission accountsfor 60% of the total number of cases when more than80% 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 TREATMENT1. Neglecting the needs of people with HIV, including the need of providing treatment2. An obstacle to self-organizing initiatives of PLHIV: no active or visible patients’ groups to advocate for the right to quality treatmentReverse effect: absence of positive examples leaves stigma and discrimination unchallenged
FIRST NEEDS ASSESSMENT AMONG PLHIVFirst needs assessment among people living with HIVconducted in 2009 by Macedonian NGO HERA – HealthEducation and Research Association:24 (69%) out of only 35 patients at the time enrolledin medical care at the Clinic for Infectious Diseases inSkopje participated
FIRST NEEDS ASSESSMENT AMONG PLHIV• Almost half of the respondents that revealed theirHIV status, felt some form of stigma anddiscrimination• 37% of them reported discrimination by healthinstitutions• 3 people whose employers found out about the HIVstatus people suffered discrimination within theworkplace• More than 90% hadn’t revealed their HIV status toanyone but their closest family or friends.
FIRST NEEDS ASSESSMENT AMONG PLHIV• 30% stated that increasing privacy when receiving ahealth service at the Clinic, with the view towardsmeeting other PLHIV, is crucial.• Most PLHIV identified providing continuous ART bythe state as one of the key problems.
FIRST NEEDS ASSESSMENT AMONG PLHIVHowever - Most respondents were positive about furthercommunication with other PLHIV and participation indifferent forms of activism. Only 20% said they didn’t want to communicatewith other PLHIV. Most people stated that they would participate ininformal PLHIV groups, become members of acommunity based organization of PLHIV or becomeactive within the existing HIV program of H.E.R.A.
FIRST NEEDS ASSESSMENT AMONG PLHIVReasons 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 supportgroup of PLHIV. 60% gave an affirmative answer regardingparticipation in trainings for PLHIV.
FIRST NEEDS ASSESSMENT AMONG PLHIVInterest in trainings on:• treatment litteracy - 60%• HIV prevention - 50%• possible ways of self-organization of PLHIV - 50%
FIRST NEEDS ASSESSMENT AMONG PLHIV60% answered that they would like to be included inthe activities related to HIV/AIDS within H.E.R.A., andthe same percent would participate in theestablishment of a community based organization ofPLHIV Clear indication that there is readiness and interestamong PLHIV in Macedonia to get involved in a self-help group and to participate in activities of theHealth Education and Research Association in a moreorganized manner
ESTABLISHMENT OF STRONGER TOGETHERFormed 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 assistanceprovided by HERA- self-help group- advocacy goals- intention of becoming an independent CBO
STRONGER TOGETHER TODAYDiversity of age, gender, sexual orientation, ethnicand religious background and social conditions18 members – the number is growingone full-time employee and one part-time assistantTwo main fields of activities: peer support and counseling advocacy (especially treatment advocacy)
STRONGER TOGETHER TODAYAdvocacy focused on improving availability oftreatment and monitoring testsPrimary objective: having a sufficient set of essentialARV medicines for first, second and third linetreatment covered by the national Health Insurance
STRONGER TOGETHER TODAY Recognized by decision makers and stakeholders inthe field of HIV, the media and the public Fully engaged in the national response to theepidemic through membership in the NationalCommission on HIV/AIDS and the CCM Several public statements, participation in thedrafting of the new national HIV/AIDS strategy, andattracted the support of the President of the Republic Initial steps of parliamentary advocacy
CHALLENGES and FUTURE STEPS• Still no sustainable system for providing treatment anddiagnostics 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 issuesof stigma and discrimination• Networking with other patients’ groups