With the statement, “It is the best of times, and the worst of times,” UNAIDS Executive Director Michel Sidibe opened the 39th PCB Meeting, highlighting that while countries are getting on the fast-track to end AIDS and affirming the role and value of NGOs and the NGO Delegation in the PCB, the Joint Programme is in the midst of an ongoing struggle to address its budget shortfalls.
The 39th PCB was also pivotal in plotting the next steps of the PCB and the Joint Programme’s two focus areas: update on the pediatric treatment gap and elimination of stigma and discrimination against children, adolescents, and young people living with HIV; and addressing intellectual property (IP)-related barriers in access to diagnostics and treatment. The NGO Delegation led and worked with Member States and communities and civil society in proposing a number of revised and additional Decision Points (DPs), most of which were eventually adopted.
The 39th PCB Meeting also highlighted the critical role of communities in the HIV response, with the agenda of approving proposed DPs in the follow-up to the 38th Thematic on the role of communities, and the NGO Report on sustainable financing in the AIDS Response along with a side event that we organized featuring donor agencies and foundations that cater mainly to communities.
This PCB’s thematic segment was on HIV and Aging. It provided the opportunity to hear from persons who have been living with HIV for more than 20 years, as well as researchers and program administrators about the challenges of living longer with HIV, long term ART administration, co-morbidities and HIV-related vulnerabilities of persons over 50.
Finally, as we bid goodbye to outgoing delegates Laurel Sprague (North America), Angeline Chiwetani (Africa), and Simon Cazal (Latin America and the Caribbean), the 39th PCB Meeting approved the appointment of incoming NGO Delegates for 2017-2018:
- Africa: African Men for Sexual Health and Rights (AMSHeR), represented by Kene Esom
- North America: Global Network of Black People working in HIV represented by Marsha Martin
- Latin America and the Caribbean: Gestos represented by Alessandra Nilo
Sonal Mehta also came in as the new representative of India HIV Alliance, replacing Simran Shaikh (Asia-Pacific).
EXECUTIVE DIRECTOR’S REPORT
UNAIDS Executive Director Michel Sidibe’s report acknowledged that the 39th PCB was taking place at a moment when the world and the Joint Programme was experiencing ‘the best of times and worst of times’. Michel recognised countries’ commitment to the Fast-Track, increasing number of people receiving treatment and greater ART coverage for pregnant women living with HIV to prevent vertical transmission and efforts by some Member States towards achieving the 90-90-90 targets, as some of the evidence of ‘the best of times.’ He noted the need for better understanding of data to address the underlying causes of HIV and for a life-cycle approach that addresses HIV in different ways at different ages particularly for children, adolescents and young people, as well as key populations.
In highlighting the worst of times defined by uncertainties, seismic change and unprecedented events including the impact of climate change on poor countries, new political winds of nationalism and isolationism, exclusion and inequality, Michel’s Report noted the need to take advantage of the opportunities that these present, including the opportunity to strengthen and improve the Joint Programme through greater efficiency, transparency and financial investment. Michel also noted that ‘as a key technical and political partner and enabler of effective Global Fund allocation and use, the UNAIDS must be fully funded’ and enjoined Member States to match their word of support for the Joint Programme with financial contribution.
In response to his report, the NGO Delegation noted the need to recognize how other global priorities such as isolationism, mass migration, exclusion and inequality – often addressed in silos – affect the behaviour of the epidemic globally, and called on the PCB to continue to address these issues holistically. We expressed concern at the negative effect that the financial challenges of the Joint Programme is having on the regional presence of UNAIDS and the serious implication of its country and regional downsizing on advocacy, policy change and removal of human rights barriers. We also called on the PCB to guarantee the adequate functioning of the Secretariat and the Co-sponsors in the fulfillment of their HIV mandates to be able to meet the global goals.
Other statements reiterated engagement with civil society, expansion of political space and investment in key populations, as critical to the key mandate and unique advantage of the Joint Programme within the AIDS response.
To access the full report, click on the link here.
UPDATED GAP ANALYSIS ON PEDIATRIC HIV, PREVENTION, TREATMENT, CARE AND SUPPORT
The pediatric treatment gap agenda is a follow up of the 35th Programme Coordinating Board (PCB) DP8.6 and DP8.9 that requested the Joint Programme to report back an updated gap analysis on pediatric HIV prevention, treatment, care, and support and an analysis of the effects of stigma, discrimination, and structural barriers that mothers, children, and adolescents living with HIV face. The NGO Delegation, however, noted the short preparation time for the report and was concerned that this would affect its quality. Initially, we proposed to postpone the report to the 40th PCB, but agreed for it to be tabled with an expectation that we would be proposing DPs to strengthen the report.
In the lead up to the 39th PCB, we worked with civil society colleagues to develop DPs for this agenda item. This includes a proposal to change the language from Mother-to-Child Transmission (MTCT) of HIV to ‘vertical transmission’, addressing particular gaps such as early infant diagnosis, enrolment and retention to care of children, adolescents, and young people living with HIV, and providing differentiated service delivery models across the age spectrum. We also proposed further research on stigma and discrimination as a follow-up on this report.
At the meeting, the ‘vertical transmission’ language faced some opposition. Some Member States felt that the term was too ‘medical’ and may be difficult to communicate and rally communities towards the intervention to curb perinatal HIV infections, in addition to being ‘difficult to measure.’ However, there were Member States who also supported us, as they had been using the term vertical transmission in their national policy and programmes, e.g. US and India. Despite conversations with Member States explaining how the language of ‘MTCT’ is stigmatizing because it blames only the mother for transmitting HIV to her child and also limits the extent to which partners of these mothers are reached, most of them were still not receptive to changing the term. Some Member States also doubted whether the request for a further research would have cost implications in light of the Joint Programme’s funding crises. In the end, we had to compromise on the PCB’s decision to keep the language of MTCT. However, we made the case clear through our interventions, and also rallied Civil Society Observers to make interventions on this issue.
The PCB adopted the following DPs (see link), which include a progress report to the PCB on both issues. We remain committed to follow through on the progress reports in future PCB meetings.
FOLLOW UP ON THE THEMATIC SEGMENT OF THE 38TH PCB MEETING “THE ROLE OF COMMUNITIES IN ENDING AIDS BY 2030
The 38th Thematic Segment last June 30, 2016 affirmed that communities have and continue to play an essential role in the AIDS response in advocacy, campaigning and participation in accountability, service delivery (including mobilizing demand), participatory and community based research and community financing. Most of the Member States at the 39th PCB therefore unanimously accepted the DPs (see link) that mainly came out of the NGO Delegation’s recommendations. Due to some overlaps with DPs arising from the our NGO Report for this PCB, it was agreed after several intense negotiations that the DPs specific to HIV financing would be kept in the NGO report, whereas DPs specific to community engagement will be discussed in this agenda item.
We pushed for the Joint Programme to generate and document strong evidence on the benefits of community engagement on access, cost and outcomes of the HIV response, as a good practice document wherever it is happening. We also advocated for a systematic study of the barriers, particularly regulatory and cultural, to engaging communities as partners in designing, developing, implementing and monitoring services for HIV, as well as engagement at the policy level. Finally, the UN Joint programme was also requested to find innovative ways of increasing such engagement.
These DPs, if implemented, will not only help communities have the highest impact on the ground, but will also be pivotal in implementing recommendations of the 2016 Political Declaration on HIV and AIDS.
Unified Budget Review and Accountability Framework (UBRAF)
Every issue discussed at the 39th PCB meeting was underlined by the current and projected financial crisis at UNAIDS. Surely, it wasn’t a normal meeting where we would see the PCB piling on more work areas for the Joint Programme, rather, it was more about looking at ways to enhance the existing work of UNAIDS and the Co-sponsors, with reduced funding.
Since the 38th PCB meeting in June this year, the issues around financing for UNAIDS have dominated the scene. The two documents provided for the UBRAF agenda item compared what a fully funded UBRAF looks like against actual spending for 2016 and projections for what activities would need to be cut out or scaled down in 2017, given a 30% reduction in funding. These measures have resulted in a reduction in Secretariat staff by almost 100 over the course of 2011-2015. This has been followed by a further reduction of 100 staff expected by the end of 2016. Dedicated Cosponsor staff has been reduced by 27% (from 862 to 627) in 2016 (Please see UBRAF Interim Report).
The PCB agreed with the recommendation to convene a Multi-Stakeholder Review Panel (to include civil society and people living with HIV and AIDS) to produce ‘a range of concrete recommendations on reforms to ensure that the Joint Programme operative model adopts a differentiated approach to country circumstances, is fit for purpose, and capable of delivery of greater impact with strengthened accountability’ in time for the next PCB meeting.
The NGO Delegation welcomed the plan to convene the panel and reiterated that civil society organizations must be represented on this multi-stakeholder panel. We did not see any terms of reference yet as it is still to be formulated, but we were assured by the UNAIDS Secretariat that this will happen.
For us in the Delegation, it was clear that every actor in the so-called ‘AIDS eco-system’ is important and the replenishment of other donors’ needs should not be substituted with that of another. Although the official discourse highlights the need for a strong UNAIDS Joint Programme, there are sectors (including civil society) who are raising the issue with regards to the continued relevance of UNAIDS. Member States have also called for more accountability of the Co-sponsors, including the need for them to show the relevance of their work in the HIV global infrastructure. Indeed, there is a great concern about the future of the Joint Programme and the PCB is eager to address these concerns at the 40th PCB meeting in June 2017.
The NGO Report: “An unlikely ending: ending AIDS by 2030 without sustainable funding for the community led response”
This report took as its starting point the global consensus, evidenced by the 2016 Political Declaration, among other recent documents, on the need for a well-resourced community response to HIV. Deepened by in-person regional and web-based consultations by, with and for communities of PLHIV, young people, women, people who use drugs, and other key populations conducted by members of the NGO Delegation, the report invited PCB member states, cosponsors, and observers, to understand the complexities faced by communities in accessing sustainable financing. The report listed major barriers identified by communities in each region and gave clear recommendations on how to overcome them in order to provide funding and build capacity of grassroots organizations.
In the report, the NGO Delegation proposed a series of Decision Points (DPs) for the PCB to adopt to help address the funding crisis for the community-led response. At the PCB meeting, our proposals were heavily negotiated alongside a set of related DPs arising from the thematic segment on Communities at the previous PCB meeting. Our strategy was to get the proposals that would be most important for communities adopted in one of the two sets of DPs. Attaching these decisions to the NGO report was less important than getting them adopted overall. We were able to work with more conservative Member States to get agreement on the proposed DPs, with the only remaining resistance coming from some European Member States concerned with the capacity of UNAIDS to take on additional work in the face of its own funding crisis. We countered that the funding challenges faced overall by the HIV response can only be overcome if there is increased investment in grassroots and community-led work. In the end, we were successful in getting all of our proposed decisions adopted.
The proposed DPs focused on calling Member States to: urgently examine domestic funding mechanisms and systems to determine where barriers to funding community- led organizations exist; create mechanisms that effectively and sustainably fund the community-led response; and, to integrate HIV responses with other health programming, recognizing that health and HIV responses must be understood within a human rights frame. The Joint Programme is also called upon to conduct country-by-country analysis of systemic, political, legal and social barriers to the integration of community-led responses in national AIDS plans and of potential solutions for removing those barriers. The NGO Report with the final DPs can be accessed here (see link).
FOLLOW UP ON THE INTELLECTUAL PROPERTY REPORT
The NGO Delegation waited for this report (see link) for two years, as this was one of the DPs arising from our 2014 report, “When “Rights” Cause Wrongs: Addressing Intellectual Property Barriers to Ensure Access to Treatment for All People Living with HIV.” One of the main reasons why this report to the PCB was postponed was because we were waiting for the results of the UN High Level Panel on Access to Medicines report recommendations. The NGO Delegation took issue with the absence of relevant DPs in the synthesis report (except to ‘take note of the report’) and immediately worked with Member State allies to propose DPs that recognized the recommendations of the HLP. We also advocated for: technical support and coordination from the side of UNAIDS with stakeholders, including civil society organizations, in low and middle-income countries; increased coordination with Global Fund and UNITAID in order to ensure access of HIV-related medicines in countries transitioning from the Global Fund; and collecting comparative information on the difference in prices between countries and regions that exercise the health-related flexibilities contained in the TRIPS Agreement. We also pushed UNAIDS to build and sustain technical support on IP, including maintaining in-house expertise among their staff.
At the IP session in the meeting, Justice Michael Kirby, Chair of the UNAIDS Human Rights Reference Group, delivered remarks that (see link) earned him a standing ovation. As expected, the negotiations to resolve the DPs took a long time. The discussions happened both in the drafting room and at the plenary, with consensus reached only on the third day, during the Thematic Segment. Almost all Member States delivered interventions, as well as CS observers. We focused on two areas: 1) to ensure that UNAIDS continues to focus on IP issues as a major barrier to access to medicines; and, 2) the PCB continues discussing IP issues to reach an actionable conclusion in removing IP as a barrier to access to medicines for all. The adopted DPs are in the link. A progress report is again expected at the 41st PCB Meeting.
THEMATIC SEGMENT ON HIV AND AGEING
The 39th PCB Thematic Segment addressed the emerging issues of HIV and ageing, that is, living with HIV over 50. With the advance of antiretroviral treatment, people living with HIV who have access to HIV drugs can have a life expectancy equal to those without HIV. Old age, however, can come with co-morbidities that require additional medications, health-care and social care. The Thematic day looked into these issues through keynote speeches from representatives of the medical field, civil society, key populations and people living with HIV.
Pre-mature ageing of PLHIV is studied in different cohorts all over the world; inflammation caused by the virus itself – as pointed out by John Rock, one of the keynote speakers of the opening panel – can lead to severe side-effects and co-morbidities that can only be prevented by early diagnosis and treatment.
Life-long treatment, its side-effects and its interactions with other drugs is a main concern with regards to the quality of life of PLHIV. The NGO Delegation expressed its concerns about the present costly research and development system, the pricing of medications and called on the Joint Programme to support Member States to revise their present practice so that all can access continuous, good quality treatment.
Stigma and discrimination in health and social care settings against PLHIV and especially key populations living with HIV is a key concern, as people ageing with HIV need to use these services more frequently. Health- and social care personnel need to receive training on the medical aspects of HIV and the social aspects of living with the virus and on key populations if we want accepting and inclusive services for all.
“Some men have vaginas; some women have penises.” – Erika Castellanos, LAC delegate.
Prevention needs of people aged 50 and above were also discussed in one of the panels. In many countries, HIV prevention programmes are built on reproductive health programmes and thus end before the age of 50. As a result, there is an increasing number of people diagnosed with HIV over 50 globally. HIV prevention and SRHR programmes need to address all age groups, including ageing populations.
“I can very well accept the age of reproduction to end at 49 years, but it is really not possible for me to accept 49 as the age to end having sex.”- Sonal Mehta – Asia Pacific delegate.
Overall, the NGO Delegation was satisfied with the conduct and the facilitation of the Thematic day and we would like to extend our appreciation to the Civil Society Advisory Group who supported our work in the preparations.