Prevention, Treatment, Care and Support

1. Prevention, Treatment, Care and Support

2. Increasing access to ARV • Prevention of Vertical Transmission • Treatment as Prevention (TasP) • HIV Testing & Counselling • Treatment Literacy • Diagnostics (CD4 and Viral Load Count) • Psychological support

3. Increasing access to ARV drugs for all those who need them What are the main issues • Treatment Access is more than Availability of services: • Must also be Accessible (decentralization of services) and Affordable (3As) for everyone • Prioritize people who need treatment themselves (TasP) • Drug regimes and toxicity • Choice as to when to start ART • Link between ARV - nutrition and sanitation

4. Increasing access to ARV drugs for all those who need them What are the main issues • A substantial and sustainable supply of drugs (prevent stock outs (supply chain management) and waiting lists (funding)) • Access to understandable information (language, etc.) (treatment literacy) • Regular blood tests, adherence and monitoring (diagnostics) • Criminalization, legal systems and laws (effect on access) • Sustainability (including funding) • Accessibility of prevention, treatment, care and support in context of crisis (social, political, war, etc.) • Funding, including intellectual property

5. Increasing access to ARV drugs for all those who need them What are our main advocacy asks? • Education about ARV and how adherence makes one less infectious • Advocacy with national authorities to increase the domestic budget allocated to PTCS and for more involvement of PLHIV in all decision-making processes and implementation etc. • Lobbying for 100% fulfilment of political commitment to assure access to quality ARV for PLHIV • Introduction of generic drugs

6. Increasing access to ARV drugs for all those who need them What are our main advocacy asks? • PLHIV must have the choice about taking ART • Alternatives to ART before one reaches the point of taking ARVs e.g. nutrition and alternative medicines. • Prevention of stock-out and interruption of treatment related to crisis situations • Improve the quality and the accessibility of information related to all issues linked to PTCS • Lobbying for health care system reforms that support client-centred services to ensure universal access.

7. Prevention of Vertical Transmission What is the main issue for you? Keep women at the centre of the services Late access to antenatal care Choice as whether to be tested. Is it confidential? Treatment for the mother and the child i.e. access to HAART (including removal of single dose nevirapine) Keeping mothers healthy, including education (treatment literacy) The right to be or not to be on treatment vs. the right of children to be born free of HIV Upholding women’s sexual reproductive health rights, including prevention of unintended pregnancy and right to have a child. Involvement of men The lack of integration of PVT in HIV services and other health services Building alliances with women’s healthcare providers to include HIV to reduce S&D PMTCT should be led by women, including at organizational levels

8. Prevention of Vertical Transmission What are our main advocacy asks? • Emphasizing women not only mothers to be • Offering information to future mothers and theirs allies (e.g. family) so they can make informed choice that should be respected. • Co-responsibility across genders • Service integration e.g. iintegrating PVT into comprehensive care • Spaces to strategize our joint advocacy agenda.

9. Treatment as Prevention What are the main issues? The concept of TasP is not clear and well understood by the community, no united vision TasP is a huge opportunity to reduce S&D towards HIV-positive people: Make everyone aware that HIV-positive people who are effectively treated do not transmit HIV TasP (in the form of PreP) moves the responsibility to the general population to stay HIV-negative. Tension between public health agenda and personal human rights. E.g. Prioritizing serodiscordent couples People who use drugs need also other prevention methods, e.g. OST and NSP.

10. Treatment as Prevention What are the main issues? How to articulate individual benefit(s), SRHR and public health benefit Treatment must never become an obligation – no one must be forced to be treated. E.g. Women living with HIV are put on TasP for life. TasP should be a voluntary informed choice. TasP must respect Human Rights. What will be the relationship between TasP and criminalization? S&D, including criminalization, are tremendous barriers to access to treatment (including for prevention) for men who have sex with men, people who use drugs, sex workers, and other key populations. Research: Need to undertake more research on the side effects of treatment for all age groups, gender and economies. When is the optimal time to start treatment? What toxicities and side effects relate to TasP? Clinical trials – our role.

11. Treatment as Prevention What are our main advocacy asks? • TasP makes sense if and only if access to treatment has been scaled up • Prioritize treatment for the sickest first. Prevent any public health-based prioritization of access to treatment: those who want to be on ARV should have access to ARV • Ensuring respect of human rights for PLHIV in the context of TasP • Protect PLHIV from coercion in treatment choices. Ensure that every person living with HIV is supported to make fully informed and voluntary choices. • Increase the level of understanding for decision makers related to TasP to ensure sustained ARV supplies • Political bodies for specific populations (youth, people of colour, homeless) • Continue advocacy for shared responsibility

12. HIV Testing and Counselling What are the main issues? Not enough counselling when people get tested Testing campaigns that don’t guarantee treatment Fear that once we make something mandatory, what ELSE will be made mandatory. E.g. - does mandatory testing equal mandatory treatment? Over the counter tests and criminalization: could lose people to care as opposed to point of care testing. Peers looking to act as support in testing settings are refused due to lack of “professional experience” Key populations: prisoner and incarcerated population - lack of confidentiality testing rates for marginalized populations – e.g. how often do we see trans people as testers Immigration: a lack of enforcement of testing (and pre-testing) guidelines

13. HIV Testing and Counselling What are our main advocacy asks? • Make support easily available after a HIV-positive test. Eg. Websites with basic easy to understand information for newly diagnosed + other ways to reach people without internet. • Matching testers by age and key population to those testing • Counselling: Simple and accessible, language tailored to each population coupled with +accountability re: taking meds, sexual choices, FP etc. • Treatment literacy for everyone –family, key populations, young people, everyone. • Sexuality education in school for young people • Updating/revising/reviewing normative guidance • Standardize and mandate HCW training – high quality • Partnering of PLHIV with medical schools and HCW to include information about S&D and effects

14. Treatment Literacy What are the main issues? Resistance by health care providers to allow peer to peer support needs to be addressed Treatment literacy has to be provided adequately to ages, gender and other social and economic factors. YPLHIV propose adherence to life, not only to medications. TL is fluid as info changes: How do we introduce this level of knowledge to clients and clinicians (specifically those who aren’t HIV specialists) New information around treatment, laws, research findings – should be part of treatment literacy

15. Treatment Literacy What are our main advocacy asks? • Response on treatment literacy from community/civil society is fragmented – needs coordination!! ITCP & GNP+ need to talk – treatment literacy curricula – with partners such as TAC – and don’t forget key populations living with HIV • Advocate for funding for treatment literacy programmes

16. Diagnostics (viral load and CD4 count) What are the main issues? Viral load testing should be part of treatment monitoring – currently it is not in many parts of the world Limited CD4 machines at service centres High cost of machines and reagents Quality is often sacrificed because of donor demands to meet targets (quantity) New battle ground on intellectual property issues.

17. Diagnostics (viral load and CD4 count) What are our main advocacy asks? • Government to prioritize the procurement of diagnostic equipment, spare parts and reagents • Strengthening health systems to monitor treatment at community level • Participate in WHO consultations as guidelines on diagnostics are developed

18. Psychosocial support (and care and support more broadly) What are the main issues? Depression: Global North; 1) treatment for depression given too early or 2) misdiagnosis of HIV-related dementia as depression Global South  it doesn’t exist! No linkage between psychosocial support and HIV treatment in HIV clinics HCW have less time for patients and often lack expertise in dealing with psychosocial issues. Social workers work on the basis of projects without steady support from the government No networking and sharing of information between HIV clinics and civil society services Holistic approach - Positive Health, Dignity and Prevention framework. Patient centred care, where we are an active agent in our healthcare, not just a passive recipient.

19. Psychosocial support (and care and support more broadly) What are our main advocacy asks? • Training for HCW in how to communicate with patients. • Partnerships with people/systems that provide these • Standards to link clinical and community support. • Advocate with funders to include in the basic package of treatment and care • Investment framework: community funding shifts tasks to provide more cost effective care and includes a place for community support, bringing care closer to home. • Research: • Look at models in place, study and describe them to make the case for future work. • on trauma and mental health for those diagnosed HIV-positive • community research on peer support • clinical evidence to show adherence increases with good care and support (cost effectiveness).

20. Psychosocial support (and care and support more broadly) What are our main advocacy asks? • Accountability measures to ensure that HCW include human rights indicators for quality of care. • Standards that NGO social workers are treated equally as medical professionals • HCW living with HIV - 90% community acquired, yet there is little or no support for these workers - legislate to care for staff to support others. • Strategic partnerships with other CD (TB, viral hepatitis) and NCDs (cancer, diabetes, obesity) • Frame our community asks as task-shifting to save money, to increase positive people's engagement with their health and care, and to increase levels of disclosure i.e. reframing of HIV as something that can be an asset in terms of the day to day management of living with a chronic condition.

21. Thank you ….