1. #AIDS2016 | @AIDS_conference PLHIV in the Caribbean: many islands, same issues. Lack of resources, fragmented health/care systems: an under-resourced community response Chrystol Albert-Hope Caribbean Regional Network of People Living with HIV and AIDS (CRN+) Session Room 12 Wednesday 20 July, 16:30 - 18:00 @PLHIVAIDS2016

2. #AIDS2016 | @AIDS_conference Background – the Positive Network Consortium Aim is to enhance access to services for PLHIV globally and regionally. Lead: – Global Network of People Living with HIV (GNP+) Partners : – Caribbean Regional Network of PLHIV (CRN+), – Asia Pacific Network of PLHIV (APN+) – Eastern Europe and Central Asia Union of PLHIV (ECUO) See http://www.robertcarrfund.org/grantees/people-living-hiv/people-living- hiv-networks-consortium/

3. #AIDS2016 | @AIDS_conference A fierce advocate In what we do we are guided by our fellow Caribbean Robert He was never afraid to speak truth to power And call it bullshit when we saw it

4. #AIDS2016 | @AIDS_conference Who was involved ? 225 people across the 11 sites PLHIV, community members from key populations and others, were interviewed.This was supplemented by regional consultations though CRN+ board and stakeholder meetings

5. #AIDS2016 | @AIDS_conference The situation – questions explored Treatment coverage is only 44% (2104) but this is seen as a success as this is was only 12% just over 5 years ago Why is there not more demand ? What experience had there been of stock-outs, perceived sub optimal treatment ? How did this impact upon PLHIV ? How friendly were services – how non-discriminatory and stigmatising ? Evidence of breaches of confidentiality ? How supported did PLHIV and Civil Society organisations feel ? Was there systematic ongoing support, in country and from external sources ? How did structural barriers and punitive law impact on the epidemic ? What could be done to challengethese or ameliorate the effects?

6. #AIDS2016 | @AIDS_conference The situation – some answers Treatment coverage is only 44% (2104) but this is seen as a success as this is was only 12% just over 5 years ago Why is there not more demand ? Lack of literacy about treatment and treatment rights Stigma in coming forward – and being seen as a difficult ‘patient’ – especially in some smaller islands Lack of people friendly services – especially for those who ‘society’ disapproves of, or in many case criminalises Services treating us as ‘charity’ cases- rather than helping us achieve our rights

7. #AIDS2016 | @AIDS_conference The situation – some answers How friendly were services – how non-discriminatory and stigmatising ? Evidence of breaches of confidentiality ? And discriminatory attitudes … A snapshot from Belize - the PLHIV stigma Index (2014) This finding was echoed in most of the countries that took part in the focus groups and consultations – sometimes these breaches resulted in losing employment, housing, physical harassment, assault. More information on the PLHIV stigma index can be found at www.stigmaindex.org www.stigmaindex.org

8. #AIDS2016 | @AIDS_conference The situation – some answers How supported did PLHIV and Civil Society organisations feel ? Was there systematic ongoing support, in country and from external sources ? NO is the simple answer In country: Limited or non-existent financial support As we say in the Caribbean ‘they talk the talk but do not walk the walk’ Are we true partners with government? We might be consulted or involved – but much tokenism and expected to do it for nothing a lot of the time External sources PEPFAR, Global fund etc are the main funding sources for civil society and PLHIV organisations but there are challenges Re-classification exercises and withdrawal of support – mostly too much to soon We are often the sub- recipient of a sub recipient of a sub recipient Often used to get funding but then not actually included in the budget lines !

9. #AIDS2016 | @AIDS_conference The situation – some answers How do structural barriers and punitive law impact on the epidemic ? In almost all countries participants gave examples of how this impacted upon their work and their lives

10. #AIDS2016 | @AIDS_conference The way forward Repeal of punitive laws Acknowledgement that civil society and PLHIV organisations are often providing, or best places to provide ancillary and sometimes primary services to their peers – testing, treatment support, counselling GIPA needs to be embedded in the response at all levels – it is not a programme, a project, a tick box – it is a PRINCIPLE by which the response should be measured Procurement of ARV’s etc needs to be joined up and collective amongst governments – mainly we are too small to afford the luxury of individual negotiations Methods to track and call to those responsible to account for stock outs and sub optimal treatments and services To hold governments accountable – to name and shame

11. #AIDS2016 | @AIDS_conference How we are going to get there We as CRN+ cannot do it all – but to follow on from what we have done in 2016/7 we will be: Providing ‘briefings for action’ detailing further the financing and health resources and gaps for HIV and NCD’s (in 6 countries in the region) Reaching out so people are able to anonymously report and detail stock-out and sub optimal treatment in a systematic way Engage more people and countries in our training and dialogues package on the Global Fund (already piloted in Belize and Guyana) Working better to detail the situation and impact of punitive laws as part of the GNP+ criminalisation scan initiative For even though CRN+ is the heart of the Caribbean we also need to be its head and have the evidence to KICK ASS – as Robert Carr would say

12. #AIDS2016 | @AIDS_conference Acknowledgements Most importantly we acknowledge all the people with HIV in the Caribbean who were involved as participants Our partner organisations who worked with us The co-authors – Yolanda Simon (Trinidad), Erike Castellano (Belize), Robin Irwin (Netherlands) Julian Hows and the team at GNP+ in the Netherlands The Robert Carr Network Fund for Civil Society Networks

13. #AIDS2016 | @AIDS_conference Closing