Global Network of People Living with HIV+ FRBS0104 - From cascade to continuum: measuring and improving the health sector response to HIV among key populations Julian Hows Global Network of People Living with HIV+

About me … Involved in the HIV response since 1983 Worked in Mexico to Moldova, Philippines to Poland, as well as in UK My role at GNP+ is to enable facilitate support the voices of others Living with HIV for more that 25 years

What I am going to be talking about Barriers and Challenges including: Why people might be suspicious of this type data collection and health services generally How it may impact on lack of agency for people What else needs to be done

Barriers and challenges Data from the implementation of the People Living with HIV Stigma Index tells us: Involuntary testing happens quite routinely People are ‘suspicious’ of health care providers as: Confidentiality is often broken People from ‘key’ populations are more likely to get worse (or no) healthcare service www.stigmaindex.org

Barriers and challenges Data from the implementation of the People Living with HIV Stigma Index tells us: Involuntary testing happens quite routinely People are ‘suspicious’ of health care providers as: Confidentiality is often broken People from ‘key’ populations are more likely to get worse (or no) healthcare service www.stigmaindex.org

Community fears 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 reports of the PLHIV Stigma Index – carried out in over 70 countries – and in many cases these breaches of confidentiality resulted in losing employment, housing, physical harassment, assault, and in some cases contributed to detention and incarceration.

Community fears And from other countries- Cameroon (2012) and Uganda(2014)

Community fears Evidence from elsewhere – especially in relation to key populations A total of 2,540 people living with HIV in Estonia, Moldova, Poland, Turkey, and Ukraine were interviewed, with their responses recorded in questionnaires.

Community concerns More data and control of where people are able to test and receive treatment impacts on Individual agency Being ‘recorded’ and managed as part of a criminalised and marginalised group Weak data protection laws , few restitution mechanisms in place – and anyway once the harm is done ….

The situation – some suggestions Community involvement in putting the systems in place ‘Patient’ centred and controlled data access

Thank you More information on the Stigma Index is available at www.stigmaindex.org More information on other reports on ’human rights abuses’ and concerns from ‘key populations’ available at www.gnpplus.net