Community based service delivery, essential for achieving …anything ! SUSA28 18.30-20.30 Wednesday 23rd Clarendon Room

Julian Hows

Positive, Health , Dignity and Prevention The primary goals of PHDP are to improve the dignity, quality and length of life of PLHIV. If achieved it will in turn have beneficial effects on their partners, families and communities, including reducing the likelihood of new HIV infections. This slide shows that all of the components of Positive Health Dignity and Prevention are inter-related and support each other. No one component is more important than the others. PHDP represents a fundamental shift in the way in which PLHIV are involved in the HIV response. It calls for leadership by PLHIV , including those from key populations. It transforms the concept of access to services , form a simple bio medical model to a holistic approach in meeting the needs of PLHIV and their families in their communities. It puts PLHIV in the centre , and calls for a comprehensive set of actions- at policy and service delivery levels- that takes into consideration the individual’s environment It recognises the importance of meeting not only the person’s clinical and physical needs but also mental, emotional and sexual health needs to protect their human rights.

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 We are a small team of 11 people working from Amsterdam and Cape Town . We are also a network of Networks existing at both the Regional and country levels Each of the networks ia autonomous entity We

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 Back ground – the principles (for info) Humanity The International Red Cross and Red Crescent Movement, born of a desire to bring assistance without discrimination to the wounded on the battlefield, endeavours, in its international and national capacity, to prevent and alleviate human suffering wherever it may be found. Its purpose is to protect life and health and ensure respect for the human being. It promotes mutual understanding, friendship, co-operation and lasting peace amongst all people. Impartiality It makes no discrimination as to nationality, race, religious beliefs, class or political opinions. It endeavours to relieve the suffering of individuals, being guided solely by their needs, and to give priority to the most urgent cases of distress. Neutrality In order to continue to enjoy the confidence of all, the Movement may not take sides in hostilities or engage at any time in controversies of a political, racial, religious or ideological nature. Independence The Movement is independent. The National Societies, while auxiliaries in the humanitarian services of their governments and subject to the laws of their respective countries, must always maintain their autonomy so that they may be able at all times to act in accordance with the principles of the Movement. Voluntary service It is a voluntary relief movement not prompted in any manner by desire for gain. Unity There can be only one Red Cross or Red Crescent Society in any one country. It must be open to all. It must carry on its humanitarian work throughout its territory. Universality The International Red Cross and Red Crescent Movement, in which all Societies have equal status and share equal responsibilities and duties in helping each other, is worldwide.

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… Make no mistake this is NOT business as usual – neither should it be Make no mistake – this is a challenge

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 Positive Health, Dignity, and Prevention emphasises the shift from laying blame on HIV-positive people to supporting the health and well-being of people living with HIV. It calls for a move beyond focusing on the onward transmission of HIV towards a comprehensive and holistic focus on supporting people living with HIV to gain control over their lives and health. It emphasises that work on HIV prevention, treatment, care and support cannot be achieved in isolation but must progress together and at the same time.

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’ Now I’ll share a bit of history to the subject… HIV prevention efforts aimed at people who know their HIV-positive status have existed in some form since the earliest days of the epidemic. At an international technical consultation we held in Tunisia in April 2009, participants explored the history of the interaction between HIV prevention policies and programmes and people living with HIV. This exercise revealed that many of these messages were overwhelmingly negative and stigmatising: ‘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 People living with HIV have identified priority areas required for achieving Positive Health, Dignity and Prevention, as well as example activities for each area (see page XX in the meeting report). Many of the activities achieve multiple aims and could also apply to the other priority areas. Positive Health, Dignity and Prevention emphasises the need to undertake these activities in connection and simultaneously.

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. This discussion is so important for our work. We know that eighty-five countries have laws around non-disclosure of HIV-positive status to sexual partners where there is a risk of transmission; exposure and transmission. The rise in the number of cases in which HIV-positive individuals have been criminally charged under these laws is worrying. So is the drive towards new HIV-specific legislation, particularly in sub-Saharan Africa, where twenty countries have proposed or adopted such laws in the last four years. There is so much excitement from potential implementers, but community concern over coercive testing, or even forced treatment, is enough to show why a Positive Health, Dignity and Prevention approach is so important. A human rights approach is essential to ensure that the needs of people living with HIV are not subsumed by public health goals.

Underpinned and drove community informed service provision models GNP+ How we work – using the Leadership through accountability programme as a FRAMEWORK 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

Relevance of LTA programme Additionally we worked with Moldova in Eastern Europe

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 programme VfM 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.

LTA impact: rights owner

LTA impact: duty bearer

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 Contributions to National Policy SANAC announced meaningful representation of PLHV in all structures, including woman living with HIV as Deputy President RNP+ formed a key partnership with a group of women lawyers. The partnership has helped RNP+ better address women’s issues and has also assisted the group with training, data analysis and report and policy writing. As a result of NEPHAK’s work to document experiences of PLHIV in the Stigma Index, GIPA Report Card, Global Criminalisation Scan, and Advancing the SRR of PLHIV, the organization now occupies a central role in the Kenyan National AIDS Control Council. NEPHAK is leading a campaign to fund the Kenyan AIDS Tribunal to empower PLHIV to enforce their human rights. NEPHAK used evidence from the GIPA Report Card to work with NASCOP to develop national Guidelines for Mainstreaming GIPA in Kenya’s Response to HIV and AIDS, in working group dedicated to producing national guidelines on Prevention with Positives The LTA programme has helped to strengthen regional and global linkages, with the International Labour Organisation (ILO) requesting the involvement of national PLHIV networks in its efforts to implement the new ILO Recommendations on the World of Work. The evidence gathered by PLHIV networks on stigma and human rights violations, will be used to harmonise national policies and then move policy to action. Kenya won Round 10 grant from Global Fund to support capacity building of CHWs to facilitate demand for HIV prevention. NEPHAK provided evidence from the Stigma Index to help convince the WHO and Ministry of Health that stigma at the community level will block access, and to stress the need to explore this community access from the perspective of the end user (PLHIV). NEPHAK met with head of PEPFAR in Kenya to disseminate HIV LTA reports and ask for support on how to address the report recommendations. At the first National Symposium on HIV and the Law, NEPHAK shared presentation based on evidence from Human Rights Count! NEPHAK has advocated to the National AIDS Control Council to allocate a budget line for a 2013 review of the GIPA guidelines, especially around treatment as prevention. NEPHAK played key role in formation of Kenyan All-Party Parliamentary Group on HIV and AIDS. NEPWHAN contacted authorities when a woman living with HIV who qualified to be an air hostess was stripped of her certificate to practice because she was HIV-positive. The campaign resulted in a settlement of the case which included employing and sponsoring the education of the woman. NEPWHAN is documenting this work in Human Rights Case! for future leverage

PLHIV Contributions to National Policy Tanzania participated in public hearings at regional and national level to target the East African HIV Act bill and remove the criminalization clause. Efforts resulted in regional bill being fixed and passed and will supersede all National HIV Acts and Bills Tanzania successfully advocated for inclusion of priorities into Tanzania’s NSP. South Africa has included the PLHIV Stigma Index as part of the NSP for AIDS. On World AIDS Day 2010, NEPWHAN hosted the Nigerian First Lady, who acknowledged the importance of the network in the national response to HIV and AIDS, and also said the government should strengthen its support to the network. As a result, NEPWHAN now has a vehicle and land for the network to build offices. GIPA Report Card helped make GIPA more than just a guiding principle; helping it become part of the National AIDS Strategic Framework. NZP+ also utilized tools to increase the focus on Young People and the SRH strategy. NZP+ was requested to and presented at the UNAIDS PCB in June 2010, evidence from the PLHIV Stigma Index and the impact the evidence had on HIV response in country. The UNAIDS PCB passed a resolution to support the implementation of the PLHIV Stigma Index in at least 25 countries. The LTA tools provided NZP+ with base of evidence to use to influence direction of Zambian NSP. NZP+ secured inclusion of PLHIV Stigma Index and Positive Health, Dignity and Prevention framework into the new Zambian NSP. NZP+ also made strides in taking data from SRHR study and getting it included in NSP. NZP+ used stigma index to develop National Workplace Policy, review gender policy, and influence constitutional review process. NZP+ used the Stigma Index and SRHR results from the LTA programme to develop guidelines to shape discussions with civil society and the Minister of Health around SRHR and YPLHIV, which previously had very light supporting materials. The Minister agreed to partner with the Ministry of Community Development and Mother & Child Health to develop guidelines around the integration of SRHR and HIV in Zambia. The consultant has been hired to begin that development. In September 2012, NZP+ held a meeting of Parliamentarians. The Parliamentarians used the Stigma Index as an official reference document to ensure laws under review were not stigmatizing. NZP+ used the Stigma Index to help draft a document for the Constitutional Review Commission. MANET+ held workshops to develop 5 policy briefs on PLHIV stigma and discrimination, which were then shared with 12 parliamentarians. Parliamentarians were engaged and committed to speed up passage of the HIV bill and to work on the aspects of criminalization.

PLHIV Contributions to National Programmes As a result of NZP+ SRHR study in adolescents with HIV, a partnership has formed with the Regional HIV Psychosocial Support to develop psychosocial tools for adolescents with HIV, the process of which UNICEF has an interest in funding. NZP+ has also partnered with Planned Parenthood as a result of the study in an effort to train young people living with HIV as counselors. Cross country technical support is a highly successful capacity building practice within the LTA programme. A Kenya PLHIV focal point is supporting the Tanzania PLHIV network, Cameroon’s focal point supports the Senegal PLHIV network, and Zambia’s former focal point supported Malawi and South Africa PLHIV networks. UNAIDS West and Central Africa have approached Cameroon and Senegal to provide technical support to PLHIV networks in the Ivory Coast, Democratic Republic of Congo, Burkina Faso and Liberia. As a result of NAPWA’s advocacy to protest potential clinic closure, the government set up a national health fund to support HIV, is setting up national health insurance and took over management of the hospitals about to close. During data collection phase of Human Rights Count!, NAPWA discovered one clinic had health workers who had violated the rights of PLHIV to access free government services for social grants. NAPWA picketed to demand dismissal of health workers and they were suspended and then after a hearing with the regional health offices, fired. Human Rights Count! received $75,000 funding from UNDP to expand the program in provinces nationally. NZP+’s involvement with the GIPA Report Card created multiple examples of direct engagement with the government. GIPA results were presented to the National AIDS Council, and then following on, PLHIV presented the findings to all ministries in country. At National Symposium on HIV and the Law, NEPHAK nominated and awarded for outstanding contribution to human rights of PLHIV and accessing HIV treatment. Award based on NEPHAK’s LTA programme SRHR findings that showed how PLHIV are not treated fairly by nurses/doctors/HCPs because of their HIV status. NEPHAK received small grant from GNP+ for capacity building around proposal development; skills which were then directly applied and combined with evidence from PHDP to write a PHDP proposal. EGPAF supported funding of the proposal, and the programme will be implemented in four counties.

PLHIV Engagement and Organizational Impacts Organizational Impacts (Capacity Building and Sustainability) PLHIV networks have each completed 5 evidence gathering and research tools through the course of the LTA programme. NZP+ worked with CAFOD to roll out PLHIV stigma index with religious leaders. RéCAP will now provide technical support to Senegal, Cameroon, and potentially Cote D’Ivoire for implementing the stigma index. ReCAP’s PLHIV Stigma Index research in Cameroon has resulted in a funder funding six national PLHIV networks not part of the LTA programme to perform the PLHIV stigma index in the respective countries. By improving PLHIV engagement in the national advocacy platform, the standing of RéCAP has improved in Cameroon and the network has been invited to be a part of the 2011 CCM. NAPWA has secured funding from the Department of Social Development in South Africa to complete the PLHIV Stigma Index in whole country with TAC and others. Prior to the LTA programme, NAPWA never had programmes on lesbian, gay, bisexual, transgender or intersexual communities. As a result of the LTA programme, NAPWA now involved with issues of LGBTI and work in partnership with LGBTI organisations. NAPWA worked with WAC to develop a civil society platform that will help address funding of the LTA programme. The National Steering Committee was developed for the Stigma Index, helping to develop protocols and budget. Launching the LTA Programme in Moldova is the first ever joint civil society mobilization with government and the UN for Worlds AIDS Day 2010. The PLHIV representative is the vice chair of the CCM for the Global Fund. Tanzania utilized evidence from the Stigma Index to secure funding from UNAIDS to support implementation of stigma index in five other regions. NEPHAK leveraged the LTA M&E structure to document work and provide evidence to funders, resulting in the World Bank provision of additional funding for Human Rights Count! in Rift Valley; a location with high rates of human rights violations. NEPHAK pushed for more sustainable financing of HIV/AIDS, engaging governments and the National AIDS Control Council to allocate domestic funding since most of HIV/AIDS efforts are funded by external partners/agencies. NEPHAK sits on the CCM for the Global Fund and is a central part of the national response to HIV and AIDS in Kenya. RNP+ elects new leadership and moves towards more inclusive HIV advocacy in Senegal. Elected first representative from outside Dakar as President and increased representation of women in network leadership from 28% to 33%. Draft Dec 20, 2012

PLHIV Contributions to Media Successes In South Africa, Ubuntu Bethu targeted the practice of “Ukuthwala” (kidnapping of young girls who are then forced to marry older men). The group advocated on behalf of the girls, educated the community how this practice is against the law, and lobbied traditional leaders for buy-in. They also made use of media with a DVD called “Stolen Innocence” and were featured on CNN. As a result, there has been a significant decrease in abduction cases. NAPWA led a march to protest the potential closure of clinics providing treatment to over 6,000 PLHIV. The group wrote a letter to the minister, requesting a meeting and then marched to the minister’s office. The minister received the petition and then the group organized media campaigns featuring them and the minister discussing the way forward. NACOPHA demands apology from Parliament and Government of Tanzania for remark on discontinuing HIV/AIDS funding since those infected “should be disregarded because they get the disease on their own will.” NACOPHA’s public statement helped to garner positive press. RNP+ held first ever PLHIV march in country in Senegal, which gained media coverage. NZP+ teamed with ZARAN to organise a meeting of 20 media organisations, 5 TV stations, 8 radio companies, and 2 online publications to help them understand the impact of HIV-related stigma on PLHIV. As a result, all the media organisations ran a story about NZP+. Post Newspapers offered NZP+ a weekly spot to inform the public about HIV and stigma. 4 National Radio programmes were held that used the Stigma Index results to raise public awareness about having a constitution that protects the rights of PLHIV. 3 live National TV programmes (sponsored by UNICEF) were aired that looked at stigma in PMTCT. Findings from the Stigma Index were used as a base and the SRHR study was used to frame young people’s involvement in PMTCT. MANET+ announcement of LTA programme covered by Malawi major newspaper, The Nation, during a news conference in October 2011. Announcement helped to spread positive message about MANET’s evidence-based advocacy.

Global Successes Global RNP+ Ibrahima Ba opens AFRAVIH 2012 (pre-eminent HIV conference for Francophone countries) with powerful call to challenge HIV stigma, end homophobia, and governments to fund HIV at the High Level meeting at the United Nations in June 2011. UNAIDS Coordinating Board, following an intervention by NZP+ and programme results, has decided to support the implementation of the PLHIV Stigma Index in as many countries as possible. The work on the LTA programme has helped increase the weight of GNP+ and WAC as partners in the international arena. GNP+ was recently invited to participate in the development of UNAIDS partnership strategy and WAC is partnering with the United Nations Development Programme on the Global Commission on HIV and the Law. GNP+ global advocacy has been shaped by the evidence and recommendations coming from national networks. The work from the national networks is improving the evidence gathering methodologies through the lessons learned, as well as providing insight where evidence gaps exist and methodologies that need to be developed to address those gaps. LTA PLHIV networks are helping define a high-profile role for civil society and PLHIV networks in discussions and policy dialogues, and to highlight the value of civil society organisations led by PLHIV. As an example, the LTA focal point from Senegal opened the 6th Francophone HIV Conference in March 2012 by calling for an end to discrimination against people who use drugs, MSM, and sex workers on the grounds that such discrimination prevents people from realizing their potential to fight the epidemic.