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Community based service delivery, essential for achieving … anything !. SUSA28 18.30-20.30 Wednesday 23 rd Clarendon Room . Julian Hows . Positive, Health , Dignity and Prevention. Who are we ? . Under the theme of Reclaiming Our Lives !
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Community based service delivery, essential for achieving …anything ! SUSA28 18.30-20.30 Wednesday 23rd Clarendon Room
Who are we ? • Under the theme of Reclaiming Our Lives! • GNP+ implements an evidence-informed (advocacy) programme focused on: • Empowerment; • Human Rights; • Positive Health, Dignity and Prevention; and • Sexual and Reproductive Health and Rights of people living with HIV. • within the framework of Positive Health Dignity Prevention • Along side other partner PLHIV networks and others
A vital partnership .... But … There is no US without me - partnership There is no ME without you - support ,care, and especially access to treatment There is no YOU - without each individual in your movement showing your humanity and acting upon it and working with us
Values and principles that underpin the approach 1 "We are people not patients or ‘beneficiaries’ of care ” We must be involved in design, implementation, monitoring and evaluation of programmes and policies affecting us. 2 "We are people not vectors of transmission” A human rights approach goes alongside but is so much wider than a medical model. 3 "We are people not scapegoats” Preventing HIV transmission is a shared responsibility of all individuals irrespective of HIV status. 4 ‘We are people with needs and desires’ Sexual and reproductive health and rights must be recognised and exercised by everyone regardless of HIV status.
What is the prize for being so radical in our approach ? • A massive scale-up in people knowing their status helps • ‘normalise’ responses to HIV in the community can: • reduce stigma and discrimination toward PLHIV • inform, educate, and support prevention efforts for all • mobilise resources to where they are most needed because of good evidence • Support the Treatment 2015 and beyond targets • But most importantly, once again, bringing communities and people to the front and centre of the response …because whatever this cruel virus is about it is about people…
Positive Health, Dignity and Prevention • Shifting from laying blame on HIV-positive people • Moving beyond focusing on onward transmission of HIV • Supporting people living with HIV to gain control over their lives and health • Emphasising direct link between HIV prevention, treatment, care and support
History – Part 1 • Long history of HIV prevention aimed at people who know their HIV status • Messages that people living with HIV have heard: ‘HIV-positive people are guilty’ ‘Positive people should not have sex’ ‘Use condoms or go to prison’ ‘HIV-positive women cannot have children’
Components • Health promotion and access • Sexual and reproductive health and rights • Prevention of transmission • Human rights, including stigma and discrimination reduction • Gender equality • Social and economic support • Empowerment • Measuring impact
Why is this discussion important? Some examples • 85 countries have laws around non-disclosure of HIV-positive status to sexual partners where there is a risk of transmission, exposure and transmission • Treatment as Prevention must show primary benefit for PLHIV – in an ethical way • A human rights approach is essential to ensure that the needs of people living with HIV are not subsumed by public health goals.
11 countries , 2 years, 5 research tools led by PLHIV to inform a joint PLHIV and civil society advocacy campaign Underpinned and drove community informed service provision models As well as building the capacity of all GNP+ How we work – using the Leadership through accountability programme as a FRAMEWORK
http://www.hivleadership.org/ Cameroon Ethiopia Kenya Indonesia Malawi Moldova Nigeria South Africa Senegal Tanzania Zambia
Reflections from evaluation • Crazy programme design set to fail: • Select feeble PLHIV networks and fragmented CSO to force a great idea on them • Expect results after 24 months with practically all work to be done by themselves • Strangulate them with strictest demands on reporting (…and support them) • Result: • for £1 per PLHIV you change the lives of 4.7m people in 10 countries
We are in a state of emergency! If we don’t act now new infections will rise; we will never achieve “universal access”, “get to zero” or “end AIDS”. Over three decades into this epidemic: we are angry that still 4500 of us are dying of AIDS-related illnesses every day. People without access to treatment die!
Relevance of LTA programme II “The LTA programme provided skills required for PLHIV to put their cases across with evidence. Politicians can’t paint a rosy picture any more. They need to face the facts!” Source: LTA programme implementers, Malawi
Value for money Source: GNP+, 2013: LTA programmeVfM guide
Ukuthwala, Eastern Cape • Up to 20 underage girls are now safe from abductions for forced marriage and fabled HIV cure • Compared to the pre 2010 baselines, up to 200 girls will be saved over the next 10 years. • This amounts to a cost of GBP: 44.38 per saved girl with a right to education and to healthy living • Since December 2011 no more forced marriages are reported and 12 abductors have been arrested in the Lusikisiki area of the Eastern Cape province of South Africa.
Malawi: phasing out of ART “Triomune” containing D4T • 450,000 PLHIV on ART “Triomune” containing d4T, responsible for at times severe side effects • At a country programme cost of £149,222, the UK taxpayer spent £0.33 per person to make government accountable and push for the acceleration of the phase out of ART “Triomune”
50 pieces of research in 10 countries Changes in access to services and quality of treatment for 633,352 People living with HIV • Cameroon: phasing out of Stavudine (d4T) - Number of beneficiaries on ART: 89,000 • Malawi: phase out of Stavudine (d4T) as a therapy option - Number of beneficiaries on ART: 450,000 • Ethiopia: 380 case managers have been recruited for health education to PLHIV/access services/treatment registration - Number of beneficiaries 380x200= min. 76,000 beneficiaries • Senegal: health spending reduction of six per cent reversed - Number of beneficiaries on ART: 18,352
50 pieces of research in 10 countries • Changes in policy environment impacting on 4,080,000 People living with HIV • Nigeria: passing of draft law of the “Anti-discrimination Bill” after 8 years. Criminalisation clauses were removed and in addition the scope was expanded to cover the workplace, schools, correctional institutions, religious institutions and society at large - Number of beneficiaries: 3,100,000 PLHIV • Zambia: PLHIV provided inputs on Zambia’s Anti-discrimination Act: anti-discrimination is now included in draft constitution for the first time - Number of beneficiaries: 980,000 PLHIV
50 pieces of research in 10 countries • Taking the overall programme costs and dividing them by the number of beneficiaries with access to services and quality of treatment (633,352), the cost per person living with HIV amounts to £6.47. • The cost for changes in policy environment impacting on 4,080,000 People (see section 5.3) living with HIV costs the UK tax-payer £1 per person.
Had the LTA never existed…what would have happened to PLHIV, their networks networks and CS? • Civil Society uncoordinated and PLHIV working in isolation. • Without a systematic approach to advocacy, proliferated messages lacking evidence would be of little interest to the media and barely heard by decision-makers. • Stigma and discrimination would be less prioritised and felt even harder at the community level. • 16.000 PLHIV would not have benefitted from an active engagement in research and would lack empowerment. • Less access to services, justice and changes in the enabling environment for 4.7m PLHIV in 10 countries
PLHIV Engagement and Organizational Impacts Draft Dec 20, 2012
