This 43rd PCB meeting, with its very full-to-overflowing agenda, heightened tensions vis-à-vis the release of a report prepared by the Independent Expert Panel; the announcement by the Executive Director of his upcoming departure, and, the many reports and updates requiring actions from the Board.
NGO Report
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NGO Report of the 43rd PCB Meeting | 13 January 2019
People on the move – key to ending AIDS
The 2018 NGO Report to PCB is intended to help renew and focus the dialogue around people on the move so that the 2030 target of ending AIDS as a public health threat can be achieved. Discussion and dialogue around people on the move have occurred at the United Nations (UN) since at least 1951, when the Convention Relating to the Status of
Refugees was adopted, and the forerunner of the International Organization for Migration (IOM), the Intergovernmental Committee for European Migration (ICEM) was established to help resettle people displaced by World War II. Fifty years later, the link between migration, population mobility, and HIV surfaced in the 2001 UN General Assembly Declaration of Commitment on HIV/AIDS. In 2016, the IOM became a related organization of the UN. UNAIDS and IOM first entered into a Cooperation Framework in 1999, which was later revised in 2002 and in 2011. In 2017, IOM and UNAIDS renewed a General Cooperation Agreement to enhance dialogue and cooperation to combine and coordinate their efforts.
PCB Summary Bulletin
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43rd PCB Meeting | 14 January 2019
NGO Delegation’s PCB Summary Bulletin
The NGO Delegation’s Summary Bulletin for the 43rd UNAIDS PCB Meeting reflects the engagement of the NGO Delegation on all agenda items amongst which: the NGO Report “People on the Move the Key to Ending AIDS”, and Thematic Segment on mental health
Agenda items
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Agenda Item 1.3 | 43rd PCB Meeting
Report of the Executive Director
NGO Delegate representing Africa
Intervention delivered by Musah Lumumba El-Nasoor
Thank you Chair.
We welcome the report of the Executive Director, ladies and gentlemen, which is warning us, as countries and communities, with a stark wake up call.
The report notes that progress in the HIV response is slowing and that time is running out to reach the fast track targets.
A stone’s throw away to the year 2020, the report, Miles to Go—closing gaps, breaking barriers, righting injustices’ , that was released at AIDS 2018, further warns that the pace of progress is not matching global ambition. We are collectively therefore, being called upon to take immediate action.
For instance, if we take stock of 90-90-90 targets, we note that there are huge disparities between different locations and populations. Even though the world embraced the ambitious vision of Zero new HIV Infections, Zero AIDS- related deaths and Zero discrimination, in 49 countries, new HIV infections are going up, 40 years into the epidemic.
Worse still, 15 million people living with HIV still do not have access to treatment. Unacceptably, we are still witnessing human rights violations, growing inequality, fear, prejudice, criminalization, stigma and discrimination including in healthcare and educational settings, which serve to not only disenfranchise people, but also push us to margins of society.
Chair, there is an urgent need to pay attention to geographic “hotspots” and populations who are at greater risk of HIV infection wherever they are. Entire regions like West and Central Africa, Eastern Europe and Central Asia, East and Southern Africa, Latin American and the Caribbean, Asia and the Pacific are falling behind. The huge gains we made for children are not being sustained, adolescent girls and young women, young people are still most affected. Resources are still not matching political commitments including for a community led response, social enablers and HIV prevention. PLHIV in their diversity –young, old and Key populations continue to be ignored; yet they contribute to 47% of all new HIV infections.
All these elements are halting progress and urgently need to be addressed head-on.
We are happy to hear and we should congratulate ourselves that, Six countries––Botswana, Cambodia, Denmark, Eswatini, Namibia and the Netherlands– –have already reached the 90-90-90 targets and seven more countries are on-track to do the same. However, are the key populations also being celebrated in these results, or, they are the 10/101/10 that are yet to be reached??
With this reality in addition to experiences across our communities; there is need for;
- Rethinking biomedical integration of HIV, TB and SRHR prevention and treatment strategies to include male and female condoms, behavioral and structural interventions –including human rights campaigns –; the stigma index and socio-economic enablers
- Developing a robust community led catch up plan, implemented for regions and communities left behind, towards 2020 and 2030 targets.
- Community owned epidemiological data in the 90-90-90 results to inform policy, programming, interventions, financing and reporting
- People centred reporting and result sharing, with emphasis on the quality of care, as we celebrate progress in the HIV response.
Thank you.
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Agenda Item 2 | 43rd PCB Meeting
Leadership in the AIDS response
NGO Delegate representing Asia and The Pacific
Intervention delivered by Sonal Mehta
Thank you Madam Chair
Mr. Sands,
First let me thank you as a PCB NGO Delegate for accepting to come to the PCB and sharing your thoughts on ——————–.
Let me thank you for coming, as a representative of Developing Country Delegate in the GF board. Because I feel it is in the interest of the Global Fund to acknowledge and support the role and importance of institutions such as UNAIDS in ensuring the investments are optimally effective. The important policy work and the framework for performance they provide, as well as the vast, often unnoticed, role they play on the ground are an integral part of the HIV response. . Based on our experience during the CCM negotiations with government, programme transitions and the oversight and OIG visits, UNAIDS stands strongly with civil society to ensure that all the investment done by the Global Fund not only is well accounted for, but also leaves a lasting effect – which is possible through a constant advocacy and dialogue with government for increasing domestic funding.
Mr. Sands, I am also happy to let you know that we – civil society – are preparing for active engagement during the forthcoming preparatory meeting in India in February, where UNAIDS plays a very important role in helping us access the epicenters of power within the country. We are excited that the Global Fund accepted to do Preparatory Meeting in India and we hope we are able to ensure that the donors see the real impact of their investments directly.
So why am I saying all this? We, the people on the ground realise that UNAIDS and the Global Fund are two sides of the same coin, one without the other is like a body without a soul and therefore, I would like to emphasise that there is a need for a clearer understanding and agreement around the role and responsibilities, not only at the policy level in Geneva, but on ground where we experience both the institutions. I see a need for a clearer definition of roles and acknowledgement of efforts. Because we have come to realise that it is not only in our benefit that we have a strong and fully funded Global Fund, but also a strong and fully capacitated UNAIDS to ensure effective outcomes for the investments and for voices of civil society to be amplified at the right places and to the right ears.
NGO Delegate representing Europe
Intervention delivered by Valeriia Rachynska
In 2016, the Global Fund agreed to the Sustainability, Transition, and Co-financing Policy. The policy gave extra time for governments and civil society to plan the Global Fund’s exit and provided guidance for countries to plan well in advance how their programs will be funded and implemented once Global Fund resources are no longer available. But there are two problems, one the policy is more ideal than practical and the onus lies on implementing country but policy is made by the Global Fund.
According to the new policy in the next 5 years, the Global Fund will cease or significantly reduce the funding for all the countries of Eastern Europe and Central Asia (EECA) and Latin America and Caribbean. CSO in EECA and LAC, concerned with the outcomes for the countries such as Serbia, Bulgaria, and Romania, where many services for the key communities were reduced after the transition, have started planning a transition.
BEST ADVOCACY PRACTICES FOR INCREASING FUNDING IN THE TRANSITION PERIOD, UKRAINIAN EXPERIENCE
Although Ukraine has not appeared in the Global Fund’s list of countries selected to shift from its support by 2025, Ukraine’s funding request in 2017 included plans for the government to allocate a bigger share of the financial responsibilities for providing services.
Despite the persistently high level of the workload of the HIV epidemic and acute military conflict, this decision was supported by all national stakeholders, key populations networks and was highly appreciated by the global community. The commitment undertook by Ukraine became possible due to the proactive role of NGOs in a variety of advocacy campaigns aimed to increase national and local state budgets of Ukraine.
(a) Advocacy campaign is enhancing national budget expenses and expanding government commitment.
Budget allocation for the methadone procurement, covering 100% of current OST patients.
(b) Expanding treatment affordability and accessibility.
(c) Synchronization of efforts to restructure the HIV programs financing and the national health system reform.
(d) Advocacy of allocation of additional money in local state budgets.
CO 100% Life jointly with the regional partners designed a set of interventions at the local level consisting of primary and secondary activities.
Despite the fact that currently, Ukraine successfully and timely implements the transition plan, which was
adopted by the national coordinating mechanism, a number of problems need to be overcome.
NEXT STEPS AND THE NECESSARY DECISIONS FOR THE COUNTRIES IN TRANSITION:
Taking into account the threat to the stability of the HIV response in EECA and LAC, and possibly countries in transition in other regions, we encourage:
(i) Member States and key donors to:
Provide technical assistance in developing a vision for long-term capacity building in the field of advocacy, communication, especially for networks of key populations.
Ensure sustainable funding for key populations during a transition period as countries in transition may face dramatic HIV/AIDS emergencies amongst MSM, sex workers, transgender people, people who inject drugs and prisoners.
Provide funding for programs improving the transparency of the process of spending national budgets.
Ensure funding for police and criminal justice reform programs as these structural elements have the strongest influence in most countries over the access of key populations to needed services.
Elaborate coordinated donor decisions. Donors need a more explicit mechanism to communicate their transition plans about a particular country with each other, to ensure smoother, less disjointed transitions.
UNAIDS Joint Programme to:
Provide targeted technical assistance and clear guidance to national stakeholders on the development of the government effective funding mechanism that ensures local HIV NGOs are able to access public money.
Amend local key laws and policies to create more enabling environment for transition (removing legal barriers for key populations or laws which hinder procurement of affordable medicines).
Increase political engagement of key populations representatives, and networks of key populations. The barriers faced by the key populations in accessing and retaining services are primarily political and not technical.
Encourage the global community and key donors to support and empower leaders and representatives of MSM communities, sex workers, transgender people, people who inject drugs and prisoners, and engage them more effectively in country coordination mechanisms.
For countries in transition, we need political will and leadership, otherwise all the efforts of Global Fund and UNAIDS will all be lost.
NGO Delegate representing Africa
Intervention delivered by Jonathan Gunthorp
Peter, thank you for your input.
Those of us in Southern Africa salute and celebrate the Global Fund for its life-saving interventions in the HIV response.
There is, however, currently a qualifier to the good news, and that is prevention.
As a proportion of total HIV funding, funding for HIV prevention in Global Fund grants has been declining. We recognize that this is mostly due to the imperative for countries to place more people on treatment. But the need to place more people on treatment is not only a factor of reaching those not on treatment, but also a factor of the total number of people living with HIV continuing to increase as the 2020 deadline for the 90-90-90 targets looms.
In Africa, the proportion of funding requested from the Global Fund in the 2014-2016 cycle that was dedicated to HIV prevention varies greatly by country, but the average (16%) is below the UNAIDS recommended “quarter for prevention”. We note with concern that the proportion for HIV prevention in the signed Global Fund grants (framework agreements) of many African countries (including Angola, Botswana, Sierra Leone, Somalia, South Sudan, Uganda and Zambia) was less than the proportion requested. There is an urgent imperative to increase “supply” from the Global Fund to meet countries’ HIV prevention programming demand.
Some of the key barriers to including HIV prevention activities in Global Fund funding appear to
include difficulties costing these activities accurately; a limited menu of evidence-based interventions (especially for AGYW); and inadequate participation of civil society representatives on writing teams where they often champion HIV prevention priorities.
The introduction of “matching funds” in the 2017-2019 funding cycle as a way of incentivizing countries to dedicate their allocation to specific HIV prevention priorities has led to dramatic increases in some countries for certain programs ranging from 172% increase in prevention spend for AGYW in Eswatini, to a 650% increase in spend for key populations and AGYW in Zimbabwe. Board documents from the 40th Global Fund Board meeting suggest that while the matching funds modality may not continue in the next cycle (2020-2022). It is imperative that these gains in prevention funding are not lost.
We note that some of the reasons for this move away from this funding is the perceived difficulties operationalizing spedn on these funds. The community-unfriendly nature of granting exacerbates this difficulty by making it more difficult for those closet to communities to access funds.
We would appeal to you and to the fund:
Firstly, include specific and binding language in the allocation letters for the 2020-2022 funding cycle to ensure countries maintain or increase funding in their grants for HIV prevention
Secondly, ensure there is adequate funding available to meet demand for HIV prevention programs. The Global Fund’s 6th replenishment conference in September 2019 is a key opportunity.
Finally, track and publish HIV prevention spending in countries, including by governments, other funding partners, and in Global Fund grants. There is often not a great deal of transparency around what countries are spending on HIV prevention, making it hard (or impossible) to hold decision-makers accountable. UNAIDS data is often not disaggregated by program area, and many National AIDS Spending Assessments are 5+ years old.
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Agenda Item 3 | 43rd PCB Meeting
Prevention of and response to harassment, including sexual harassment; bullying and abuse of power at UNAIDS Secretariat
NGO Delegate representing Europe
Intervention delivered by Ferenc Bagyinszky
Thank you, Madam Chair.
During the June PCB, in my intervention on behalf of the NGO Delegation, in the middle of the discussions around setting up the Independent Expert Panel we called the attention of the Board to NOT overlook the underlying connection between abuse of power that manifests in the form of stigma and discrimination, harassment and violence in the HIV epidemic.
Please allow me to quote from the June intervention: “This IS our core business of the HIV response at ALL levels as gender based violence, harassment, bullying, and abuse of power are deeply rooted at all levels of society and are the main drivers behind the HIV epidemic in all regions.”
So I´m calling on again this body to do our duty, and strongly and properly address the issues identified by previous reports and the current response of the Staff Association and the recommendations of the report of the Independent Panel.
Thank you.
NGO Delegate representing Latin America and The Caribbean
Intervention delivered by Alessandra Nilo
Thank you Madame Chair.
Over the past three years, UNAIDS has been confronted with various external and internal challenges and thus had to reinvent and question itself and to present solutions for different areas. In order to find common paths, our Delegation has worked with Member States, with the secretariat and co-sponsors to strengthen this institution, not to weaken it: we review its operating structure and reinforce strategies to mobilize new resources and build partnerships. In particular, we discuss how best to communicate the values and unique work done by UNAIDS, as well as its strategic importance for the global response to HIV and for many of the successes achieved over the years.
It was with this perspective, that of strengthening UNAIDS, our delegation welcomed the request of the Executive Director and the following decision of the Board to establish the Independent Expert Panel on harassment, including sexual harassment, bullying and abuse of power at UNAIDS Secretariat. Through the Board, we have worked hard to ensure the independence of this panel whose methodology allowed us to have a diagnosis of the working environment at UNAIDS.
It is important to mention the STATEMENT BY THE REPRESENTATIVE OF THE STAFF ASSOCIATION and I quote “that the majority of staff felt that they had had a chance to provide inputs into the Panel’s work, trusted the process to have been confidential and were kept sufficiently informed”.
The diagnosis before us is extremely serious and requires nothing less than a strong, powerful and politically bold response. It requires Zero Tolerance, immediate redress and strong measures against perpetrators of violations. Not just because the world is watching us, but because UNAIDS has advocated everywhere that sexual harassment, bullying and abuse of power help to fuel this epidemic and we have to walk the talk. To ensure that in this House all women and all persons working here are protected and treated with respect and dignity is a moral imperative and it directly affects the capacity of UNAIDS to continue responding to HIV. Credibility matters, but people matter more. Protecting and supporting people are the reasons this organization exists.
Although it is a fact that the culture of sexual harassment, bullying and abuse of power still dominates the world and the institutions, this can not be used to undermine the importance of the IEP report or to normalize this type of culture. As feminists and defenders of human rights this has been our daily struggle: to challenge the power relations that violate rights, bodies and deeply mark workers’ soul and mental health.
UNAIDS makes us proud of its pioneering efforts, its data production and its many policies that have been essential in the global response to HIV and AIDS. However, its various cases of programmatic success can not free their leaders, including their Senior Leadership from being accountable for what has happened in the institution – let’s recall that the staff association has firstly brought (and I quote) “the issue of incivility and harassment to the attention of senior management and the Program Coordinating Board in 2011”.
Therefore we – collectively – need to do better and remember that we are in a “SDG era” when finally gender equality actually begins to matter. We are witnessing a period of cultural transition, which is difficult for all of us, but also very promising because it challenges us to turn this diagnosis into an opportunity for change and to ensure broader wellbeing at work.
In order to do that, we welcome the idea of a Plan of Action to follow the proposals presented in the Management Response, which is a staff-centered approach and its commitment to measure progress through indicators. But this Plan of Action also needs to respond to the IEP report and to the additional proposals presented by the Staff Association.
Over the year we have been campaigning for the “UNAIDS We Need”. Now we are adding another chapter to it: the “UNAIDS Leadership we need”. We need reinvigorated leadership.
Capable of eliminating harmful behaviors at all levels of UNAIDS work. Able to inspire this change, starting with being an example. Able to show perpetrators that, finally, the Age of Zero Tolerance of sexual harassment, bullying and abuse of power has arrived at UNAIDS – and has arrived to stay, under the guidelines of the 2030 Agenda, and the cultural uprising brought about by the #MeToo movement.
The message that we will send to the world with this PCB can not be doubted: we are united by the goal of achieving a strong UNAIDS, one that sets an example of inclusiveness and respect within the United Nations. And, in this sense, we call on the UN General Secretariat to continue taking all the necessary measures and to continue being a champion for gender equality and in ensuring that all UN employees enjoy a safe and enabling working environment.
NGO Delegate representing Asia and The Pacific
Intervention delivered by Sonal Mehta
Thank you madam chair.
In Zimbabwe, Julie is safe because UNAIDS has actively advocated with the government to provide free ARV. In Bangladesh, the local national AIDS program is preparing for mapping of key populations because UNAIDS is providing technical support. NGOs in India are excited as they prepare for the preparatory meeting for the Global Fund since they are sure that UNAIDS will help them get access to political leaders. Community groups in Ukraine reach out to the regional offices of UNAIDS to request support for training of CCM members. I can keep narrating how critically important UNAIDS is for us and for millions of people affected by HIV today, but I realise that we cannot be here for more than three days!
As a member of the Bureau, I know how much effort and energy have gone into ensuring that the expert panel was completely and fully independent. You can take the report and run it down in technicalities of how numbers and figures are not analyzed according to academic standards or how language is too direct. How diplomacy should have been used or how it could have been made more impersonal. The fact of the matter is that the report is honest, in fact painfully honest, direct and brings out the reality that staff association has been raising for years to the senior management, until it finally got the necessary attention of the board. Our PCB NGO Delegation now is hoping that the management takes the outcomes of the report and responds to the issues raised there, let me emphasise ‘respond’ – not react. The current Management Response neither responds nor reacts. It is in the space where there is a need to push the system a little while the Expert Panel report is at the space which is asking the system a revamp.
The issues of staff harassment including sexual harassment, and abuse of power, lack of trust in policies and systems, fear of speaking up, sense of isolation and groupism are issues that can’t be changed by training. It is a special situation and the minimum expected is that there is a special response, if not extraordinary. I am sure many of you have read the much awaited staff association report which clearly says in point 3 — The Panel’s report paints a picture of deep frustration, lack of trust, injustice, impunity and disfunction. We are deeply concerned by the views and experiences of staff described in the Panel’s findings. But, the Panel’s findings do not surprise us. Many of the same views and experiences have also been expressed by staff in the anonymous USSA surveys over the last few years – and in other places, they note that they have been raising the issues since 2011 that have been ignored from the leadership side!
As representatives of millions of people we serve as community members and as fellow civil society, it is hard to sit here and keep justifying that how everyone should be given yet another chance, sending the message that it is ok to continue to do so for some more years – but it is not OK. We need a stronger UNAIDS, because its lack of focus on pricing and intellectual property, will result to people not having access to treatment and deaths, and the lack of prevention programmes will increase HIV among young people. Advocacy for funding for HIV is going down day by day, due to lack of voice and solidarity, civil society is being shut down in many countries. Due to the excuse of “new priorities”, donors are walking in and out of countries at their terms, not the needs of the country. None of this is ok and this is where we know that a stronger UNAIDS is what we need.
In my many years of working on HIV, I have experienced this institution in my country, the regio,n and globally, as vibrant, supportive and integral to the HIV response. In some ways, the health of UNAIDS reflects the health of HIV response in the countries – we keep shouting about the need for prevention but no one responds, we keep shouting about lack of services but no one listens. But I think a time comes when everyone realises that business as usual is not OK, and that time is here for UNAIDS. The staff association report released yesterday is more forward thinking than the management response. Three suggestions of way forward of many given by them summarise for me the actions needed – full responsibility and accountability of senior leadership, accountability of managers, and prevent retaliation – these three encompass succinctly the environment of the organisation. I call upon the PCB to realise this is drastic situation and if we do not take a drastic stand the world will conclude that it is ok for the PCB to let the harassment including sexual harassment pass by because UN is above any law. The UNAIDS PCB WE NEED has to show courage in acting on the results they invited.
NGO Delegate representing Africa
Intervention delivered by Musah Lumumba El-Nasoor
Thank you madam Chair.
Ladies and gentlemen, this is my last PCB meeting as an NGO delegate from Africa, a region most impacted by the epidemic. And as such, I have keen interest in these discussions, which might have profound impact back home.
First, I need to reiterate that, there should be no tolerance to abuse, harassment or bullying of any form!!
There was a time where I come from, when many of our loved ones died in large numbers just because life saving ART wasn’t available for free, and worse still, those who managed to pay, never survived long as mono-therapy treatment weren’t as effective.
Many children were born with HIV as PMTCT by then was not available. Key Populations never had a place to call home, no access to HIV and other health related services, no one stood for them. HIV and AIDS was recognised as a disease for bad people and even considered as a punishment from God.
In 2018, voices of the most vulnerable have been amplified, young people living with HIV are attending school and growing into responsible people. Women living with HIV are now able to nurse babies free of HIV and exclusive breastfeeding is now the best option for newborns who are HIV exposed.
In previously hostile environments, KPs now have a right to access services and have capacity to contribute to the response in their communities.
Increasingly, policies and programmes are now responsive to our needs, the political commitment across Africa and the rest of the world is steadyfast to end AIDS.
Important to note today, are challenges and issues that the Independent Expert Panel report points out,work that is not done yet. We must all address the issues raised which if not-will have a profound impact beyond UNAIDS as an institution.
My question therefore is, Are we hungry for ANY action, or, we can cautiously and honestly, deliberate in order to find a workable long lasting solution?
Madam Chair, there is a need for dialogue, taking into consideration REAL sensitivities, PROFOUND cultural differences and lived experiences that reflect diverse life situations and livelihoods.
It should be on record that “it’s not our diversity which divides us, it’s not our ethnicity or religion or culture that divides us, since we have reached this place together. Recognizing that we honestly have miles to go to achieve not only and end to AIDS-but also to fully attend to the serious concerns highlighted in the report.
There can only be one next step amongst us, it is to look closely at what we need and not compromise. At the same time we must cherish the opportunity to do this next work together. Working toward, transparency, dialogue, collaboration and healing.
Allow me to remind everyone including myself, the togetherness and the spirit of collective responsibility that has enabled us to reach this far. The politics should not divide us, but rather serve to open windows for healing, reflection, team work and renewed energy for a better UNAIDS as a joint programme, for an impactful response.
My life, even in 2018 depends on it. Let’s choose life together.
NGO Delegate representing Africa
Intervention delivered by Lucy Wanjiku Njenga
Greetings PCB, civil society and women’s rights leaders.
I am Lucy Wanjiku, the founder of Positive Women Voices Kenya. I am the incoming PCB NGO Delegate for Africa. I am an advocate and I do represent many of my peers who may not be heard. Most importantly, I am a young African woman. A woman directly impacted by the HIV pandemic and one who has directly benefited from the work of UNAIDS.
I want to share a few thoughts with you from my context.
1. Without shadow of a doubt we want a safe workplace that has zero tolerance to Sexual harassment, bullying and abuse of power. Every woman and girl has the right to this. I want and need safe places to work and enjoin UNAIDS and partners to ensure all women have this safety and security!
2. UNAIDS has worked tirelessly to ensure everyone is part of the response fully and meaningfully and especially girls and young women who bear the disproportionate burden of HIV/AIDS.
3. I am the girl in the village, the young woman with ideas and the one ready to be a part of improving the health, safety and rights of my local community and Africa as a whole. I want to see a UNAIDS that does not leave girls and young women behind. That listens to me and as it keeps working towards Zero, does not Zero me out.
Thank you kindly for you time.
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Agenda Item 4 | 43rd PCB Meeting
Follow-up to the thematic segment from the 42nd Programme Coordinating Board meeting
NGO Delegate representing North America
Intervention delivered by Trevor Stratton
Thank you, Madam Chair.
Tuberculosis is a global crisis that kills over one and a half million people every year. It is the leading killer of people with HIV. Based on the Political Declaration resulting from the High Level Meeting on TB in September 2018, General Assembly President María Fernanda Espinosa Garcés from Ecuador said tuberculosis claimed 1.6 million lives in 2017, despite being a preventable, treatable and curable disease. Yet, collectively we have failed to respond effectively to TB, because it mainly affects poor people including criminalised and marginalised communities such as people who use drugs, prisoners, indigenous people, migrants and their communities. Sounds familiar?
We have built a quite robust HIV response globally, but we have neglected TB. The International Treatment Preparedness Coalition, and many other groups, highlights the need to recognise our collective and individual failures. It is time we realise that HIV and TB are two sides of the same coin – difficult living conditions, vulnerable life-styles and stigma.
At the 49th Union World Conference on Lung Health took place in The Hague, in October, this year, I joined a panel presentation with members of the global Indigenous Stop TB Working Group, highlighting where systems work in recording and reporting well, it showed that the large burden of TB carried by indigenous populations compared to non-Indigenous population. Identified barriers included HIV syndemics and antimicrobial resistance, but more challenging, is the lack of community engagement and social interventions. Delivery of programs in remote regions and isolated communities within large urban areas must be appropriate to the community, culturally appropriate and safe, community owned, evaluated, and used to improve HIV and TB co-infections’ outcomes locally and globally.
It is paramount that we develop multi-pronged strategies to support marginalized people (indigenous populations, migrants, etc.) living with HIV and are co-infected with TB.
It is essential that we, in line with the proposed decision points:
- Ensure the rapid rollout of lifesaving new diagnostics such as LAM testing, and better and safer medicines such as bedaquiline. We need to commit to stop using medicines that do not work or worsen health outcomes for people with TB.
- Ensure high-TB burden countries modify their Global Fund-funded TB and TB-HIV programs to reflect the newest WHO treatment and prevention guidelines rather than old and outmoded approaches.
- Ensure access to better and safer TB health technologies, and through funding the bold expansion of contact tracing and active case finding campaigns.
- Commit to implementing and aggressively scaling up access to the latest evidence-based health technologies and policies in our countries. In short, we must commit to ensuring that every single person who has TB receives the best available testing, treatments, and support – irrespective of their ability to pay or in which country they may live. In pursuit of this goal, we place human rights, and particularly the right to health, ahead of private interests and short-term political considerations.
- Ensure that better, more tolerable treatment regimens and co-formulations are developed
We cannot continue to act as if TB occurs in a separate world from HIV, particularly in the global south where TB affects the poor and marginalized. We need to be proactive, bold and innovative in dealing with the intersection of two diseases when they intersect, and leave no one behind, otherwise it won’t be possible to achieve the SDG Goals by 2030.
NGO Delegate representing Latin America and The Caribbean
Intervention delivered by Devanand Milton
Good afternoon honourable Chair,
I am a TB affected survivor, the youngest from a family of eleven siblings. I live in the rural area of Guyana, South America. When I was nine years old, my Mom got very ill and she was diagnosed with TB. In those days, after diagnosis, persons would be quarantined in a secluded building in the community hospital. I did not know what her illness was then, but when I was older, my Mom disclosed to me why she was hospitalised for such a long period. Subsequently my father, who was the sole bread-winner of my family, was also diagnosed with this disease. These were the most trying times for my family.
Both of my parents were locked away from us. My eldest sister and brother took on the responsibility for our family. Every Sunday our family would visit my parents at the community hospital and they would look at us through a window from the hospital building. We could not have any physical contact with them. At such a tender age, I could not understand why my parents were locked away. I was fearful that I would contract the same illness and would be locked away also. This thought traumatises me still today. My father also raised poultry and planted cash crops, but when the neighbourhood knew that they were locked away in the hospital, no one bought any of our produce anymore. On many nights, we went to bed hungry, because there was no real source of income.
When my mom was released from hospital, she was treated with scorn even from her own family. At my young age, I could sense her pain. She tried hard to be brave, sometimes I saw her crying silently in our backyard.
I lived in fear that someone would out me in school and my teacher will make me leave class. The stigma we faced has a lifelong effect on my family and has followed us for three generations now. My Mom internalized this devaluing, leading to low self-worth and feelings of shame, disgust, and guilt.
PCB members and observers–These experiences were more than 45 years ago and I remember them like there were yesterday. That is how profound the stigma associated with TB impacted my life.
Reducing TB-related stigma is integral. TB-infected individuals perceive themselves to be at risk for a number of stigma-related social and economic consequences. We have made great progress with TB diagnosis and treatment in many countries, but if TB-related stigma and discrimination is not addressed as a cross cutting issue, there will be loss of progress in controlling TB related deaths.
I am calling on Member States to commit funds towards elimination of TB-related stigma interventions.
Thank you.
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Agenda Item 5 | 43rd PCB Meeting
Way forward to achieving Sustainable AIDS results
NGO Delegate representing Africa
Intervention delivered by Musah Lumumba El-Nasoor
Thank you Madam Chair,
Ladies and Gentlemen, we are being reminded that Ending AIDS by 2030 as a public health threat is a Sustainable Development Goal and as such, bringing the epidemic under control is a prerequisite for the long-term sustainability of AIDS response results.
This is a wake up call. Complacency will carry a heavy price. If new HIV infections are not drastically reduced soon, the medium- to long-term costs will keep rising as the number of people requiring antiretroviral therapy increases. Complacency about the need to accelerate equitable AIDS responses will lead to increased health spending pressures on every one of us, as people, communities, governments, funders, to name but a few.
The funding trends mask troubling inequalities. Marginalized people, adolescent young women and girls, and communities are being left behind because of inadequate financing for programmes that focus on key populations and on adolescent girls and women. In many countries, and in all regions, the programmes that do exist––particularly those focused on key populations and women––are heavily reliant on external assistance, funding which is decreasing.
Yesterday in the ED’s report, we were reminded of the population hot spots and regions left behind. Ladies and gentlemen, transitions from international assistance in some Eastern European, Central Asian and Caribbean countries badly compromised their AIDS responses amongst people who inject drugs, sex workers, women, youth and people on the move. AIDS remains the leading cause of death among women of reproductive age and the leading cause of death of adolescents in Africa — including among young people, a rapidly expanding demographic.
This is so because there is inadequate funding for interventions that meet our emerging needs, as funding for such interventions is always sourced externally. The principle of shared responsibility implies donors should continue to share responsibility for financing HIV programmes, including those led by communities, where they are not locally affordable. We also need the promised funds for advocacy work.
Ladies and gentlemen, we have to re-echo that, poorly planned and executed donor transitions heavily affects us as people and communities, resulting into service disruption. The global community will fail to fulfill the SDG goal of “leaving no-one behind”, if key populations are not reached with HIV, health and social programmes that are grounded in human rights
Reviewing and reforming age of consent laws, using community-led testing and self-testing approaches; providing differentiated, youth-friendly services and psychosocial support are among many feasible improvements.
The people-centred and human rights-based approaches demanded by us, as communities should be the hallmark of the AIDS response. As civil society we should be increasingly supported to participate and lead in the planning, implementation, and monitoring of these transition and sustainability processes, as well as development of investment cases.
As communities and organizations of people living with HIV, we should drive the reshaping of the sustainability agenda for we know what, when, where and when it works.
Thank you.
NGO Delegate representing North America
Intervention delivered by Andrew Spieldenner
Thank you for the opportunity to speak, Madame Chair.
In the North American context, our HIV epidemic has been characterized by massive disparities along the lines of race, gender, sexuality and other characteristics such as migration, employment in sex work, experience with drug use, and HIV-criminalization. We do not have a generalized HIV epidemic and we struggle against “general population” HIV prevention and services that do not take into account the specialized needs of key populations.
One solution in the US context was the development and ratification of the Minority AIDS Initiative in 1998, which is a government-sponsored legislation. Since 1999, the Minority AIDS Initiative has distributed funds directly to Black, Latino, Asian and Pacific Islander, and Native American projects through several funding arms. These arms have strengthened HIV care and services for racial/ethnic minorities, as well as enhance innovative initiatives such as the violence and health initiative, which funds 6 projects across the US to examine the link between violence and HIV vulnerability in African American communities. Minority AIDS Initiative has also been used to bring together community and governmental partners to address multiple health issues affecting racial/ethnic minorities.
While the Minority AIDS Initiative has done important work, it was ratified at a time of relative political goodwill towards HIV and affected communities. Unfortunately, with its focus on race, other intersectional identities have not had the same focus of sustained funding. It would be important to scale it up and expand to include key populations, including those who are consistently left behind like Black and Latino people, people of trans experience, sex workers, people who use drugs, immigrants and migrants, and people who have been imprisoned.
I do understand that the Minority AIDS Initiative represents a domestic policy intervention: one that does not carry the “gag rule” associated with other US-based funding. What the Minority AIDS Initiative does teach us is that funding for key populations is possible and necessary through various in-country models like formal legislation. The Minority AIDS Initiative also points to the importance of ongoing (it’s been funding annually since 1999) investment in community-led programs as well as community/government public health partnerships. The Minority AIDS Initiative demonstrates one way that transition plans can be developed for effective HIV responses in-country – through legislative protections and ear-marked funds towards addressing key population needs.
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Agenda Item 6 | 43rd PCB Meeting
Annual progress report on HIV prevention 2020
NGO Delegate representing Asia and The Pacific
Intervention delivered by Sonal Mehta
Thank you Madam Chair.
It is not so difficult for governments sitting around this table and those who are not here in the room to understand that we will not be able to treat our way out of the HIV epidemic. Nor is it difficult to understand that we therefore need increased and emphasised focus on prevention, & primary prevention. Yet that is not happening. We need political will that results also in resources. Donors must put money in basic prevention services in condoms, for peer outreach, for working on structural barriers, for PrEP – basically in ensuring safer sex.
Resources have to come both from domestic funding and from external donors. Over the years we have seen, studied, and known that community-led programmes are not expensive, they’re more effective, and yield results beyond the planned gains. Most importantly, we need to establish a sustainable response. What is really needed is that we learn from our lessons and recommit to invest in community driven prevention programmes to reach the people who are not reached. If we do not, not only will we not be able to reach the targets of 90-90-90, but it will be ridiculous to talk about zero new infections while investing less than 25% of funding in prevention. We remind everyone in this room that all governments committed to the 2016 Political Declaration to invest a quarter of all investments in prevention. Where is the quarter for prevention?
Finally, the World got excited, and countries committed to a road-map with targets set for themselves. And yet we come here and have no feedback on the 10 countries implementing road maps. Why doesn’t the prevention paper show the performance of countries against their promises? Why does it not show how much each country commits to prevention? Without these data, there can be no clear accountability.
And there can be no clear monitoring of funding for and monitoring of support to the millions of sex workers, prisoners, transgender peoples, gay, bi, and other men who have sex with men, people who inject drugs and people living with HIV around the world. Wherever responsibility for this monitoring lies, whether with the prevention coalition or UNAIDS, without those data, this Board cannot strategically and effectively carry out its oversight and governance function.
NGO Delegate representing Asia and The Pacific
Intervention delivered by Jules Kim
While we are seeing important rapid and sustained scale ups of HIV treatment, progress on prevention has stalled. There continues to be insufficient investment in prevention and a failure to implement programs, including human rights programs, that have been proven to work to scale or sometimes at all.
But what continues to be one of our largest barriers is the ongoing failure to address the structural, legal and policy barriers to evidence based prevention responses. 189 countries still criminalise sex work with 30% of those countries criminalising ALL aspects of buying, facilitating and selling sex. As cited in the Lancet Special Issue on HIV and Sex Work, the decriminalisation of sex work would be the single greatest intervention resulting in a 33-46% decrease in infections among sex workers and our clients. For sex workers, people who use drugs, men who have sex with men, trans people and women the laws that criminalise us remain insurmountable barriers to accessing and implementing HIV prevention strategies to protect ourselves and others from HIV. In too many countries, we are criminalised for who we are, who we love and how we work. The tools we use for prevention are used as evidence to prosecute us for our drug use, sex, sexuality and sexual labour.
We have ample evidence of the success of prevention programs by and for sex workers when they are delivered at scale. Yet across countries we continue to receive reports of how health promotion materials, information on HIV prevention and condoms are routinely confiscated from sex workers and used as evidence against us. The sheer lunacy of this, the violation of our rights and the incredible waste of resources that are used in arresting us and confiscating the tools we use for our work to protect ourselves and the community from HIV. We will not end the epidemic until we address the legal barriers to implementing prevention strategies and to access and possess the means of prevention.
There is a hesitance for Ministries of health to see legal and policy reform as part of their remit. I cannot stress enough how much they are interrelated. Responses to prevent HIV cannot succeed until they are aligned to human rights and address the criminalisation of key populations. I urge member states to work collaboratively with key populations and ministries of justice in your countries to remove the legal and policy barriers to prevention strategies and to repeal criminal laws against sex workers, people who use drugs, men who have sex with men and trans people to end HIV transmission and infection- not just because it is the right thing to do, but because it is necessary to prevention efforts. It is cost effective, and it works. We cannot end the epidemic until we end the criminalisation of key populations.
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Agenda Item 7 | 43rd PCB Meeting
Update on the access components of the UNAIDS 2016-2021 Strategy: removing access barriers to health technologies for HIV and its co-infections and co-morbidities in low- and middle-income countries
NGO Delegate representing Latin America and The Caribbean
Intervention delivered by Alessandra Nilo
Thank you Madame Chair and thank you to the Secretariat for this report.
The findings of the report presented by the Secretariat raise serious concerns regarding the capacity of middle-income countries in sustaining their successful treatment programmes.
As we have been learning from several discussions within the Global Fund and elsewhere, the World Bank classification of middle-income countries overshadows the huge economic and social inequalities in those contexts, as well as fiscal burdens on countries such as debt repayments. As CSOs have long alerted, the geopolitical context is undermining our successes on HIV.
For example, in countries like mine, Brazil, but also in many other middle-income countries, political and financial instability are leaving many people behind, especially those who are more vulnerable in the context of the HIV epidemic. Let me alert all of you that the newly elected Brazilian president publicly affirmed his view on HIV / AIDS when he was a parliamentarian, and I quote, “no government money should be used to treat those who contracted diseases in sexual acts”, and also classified the LGBTI population as a risk group. So, right now, I do not know what to expect from my own country, which has always made me proud for its response to HIV.
Therefore, yes, it is a fact that regarding the sustainability of the treatment programmes, the lack of political will is ignoring the needs of people living with HIV and most at risk. But, still more concerning is to face the fact that even when there is political will, the lack of policy options to manage intellectual property rights using a public health lens, has a huge impact on the capability of those countries to access more affordable health technologies, including assured quality generic products, to prevent and treat HIV infection, as discussed in the report we have before us.
The examples of dolutegravir and PrEP are eloquent in showing that in many contexts, high prices and lack of access to less expensive generic formulations are impeding people to have access to the WHO recommended treatment options.
Also, there is a tremendous need to increase the availability of pediatric formulations of HIV treatment regimens, as children are being left behind for not being considered “an attractive market” for both originator and generic companies.
The adoption of the 2030 Agenda and the SDGs was an important opportunity to commit to targets aiming at reducing inequalities in different areas of development, including health. The SDG 3 reaffirmed the commitment of the global community in ensuring healthier lives for all, not only for specific segments of the population, usually in the high-income countries.
In many occasions in the past, UNAIDS has convened people around these objectives, and its 2016-2021 strategy reflects very well this new global commitment. However, it is imperative that those commitments are translated into concrete actions to support countries in overcoming barriers to access to medicines and other health technologies.
In this era where forms of national populism are sweeping the globe as an epidemic, and where attacks on multilateralism are escalating, it is more urgent than ever to foster policy coherence across the Joint Programme, and to ensure stronger coordination to bring the needs of the HIV community into different fora, and deal with access to medicines.
The PCB NGO delegation stresses that it is imperative to restore the capacity of the UNAIDS Secretariat to provide the Joint Programme with consistent technical support & accountability on access to medicines issues, by fulfilling its coordinating and advocacy roles.
The decision points arising from this discussion must enable UNAIDS to find the best ways forward to really keep the access to quality and affordable treatment, diagnostics and other health technologies for all at the centre of the AIDS response.
Thank you.
NGO Delegate representing North America
Intervention delivered by Andrew Spieldenner
Thank you for the opportunity to speak, Chair.
In the United States People living with HIV Caucus, we are very concerned with accessible, affordable and appropriate treatment globally. We need HIV medical technologies – including treatment and diagnostic tools – in all parts of the world.
I am a gay man of color living with HIV. I am fortunate enough to be virally suppressed; I have really good insurance. And I still nearly did not get treatment for Hepatitis C.
In the US, we do not have universal healthcare. Even in Canada – where there is universal health coverage – this does not include all drug coverage. When I was diagnosed with Hepatitis C in 2014, treatment was available. My doctor immediately prescribed it. And then I waited.
My insurance company denied my initial prescription and I could not afford it on my own. At the time, this regimen cost upwards of $80,000 USD: I have never been able to afford my own treatment.
I didn’t t know what to do. I was very aware of how lethal Hep C could be – my friend Ann Sternberg died of it. My HIV clinic handled the negotiations and I received my medication 3 months later.
3 months.
3 months of living in fear, afraid of the damage in my body. Drinking daily in order to manage my fear.
90 days.
When I was an active drug user, those months would have killed me. I would not have waited for the meds. I would have been on a drug binge, unable to manage another medication regimen.
Why did my insurance company not pay for it? The cost. One of their agents contacted me to inform me how much the drug costs, and what the other options were: she suggested sobriety.
I had another drink.
Barriers to access are not just about IP. One real challenge is the cost of drugs.
The cost of Hepatitis C treatment remains beyond most people to pay for on their own. And let’s be clear – Hepatitis C is treatable now. People no longer need to die from it. Yet it remains unavailable due to cost. UNAIDS must do work to analyze and remove this barrier.
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Agenda Item 8 | 43rd PCB Meeting
Best Practices on effective funding of community-led HIV responses
NGO Delegate representing Asia and The Pacific
Intervention delivered by Aditia Taslim Lim
15 years ago, I was diagnosed with HIV at the age of 18. 15 years ago, my life was saved by a community-led organization.
I am a living example of how civil society organizations have been essential for the empowerment and mobilization of key populations and women in many countries. We play a critical role in ensuring effective AIDS response that answers to the diverse needs of people that, unfortunately are not reached by our governments. Thus we should also be at the center of all programming if the world is to end the AIDS epidemic as a public health threat by 2030.
There is a global consensus and agreement among governments across the world through the commitment made in the 2016 Political Declaration on Ending AIDS. This includes ensuring that at least 30% of all service delivery is community-led by 2030, and at least 6% of HIV resources are allocated for social enabling activities, including advocacy, community and political mobilization, community monitoring, public communication, and outreach programmes for rapid HIV tests and diagnosis, as well as for human rights programmes, such as law and policy reform, and stigma and discrimination reduction.
Currently, the global monitoring tools used by countries to report on their progress, including the Global AIDS Monitoring and National AIDS Spending Assessment, do not reflect how much investment is made towards community-led initiatives. In 2014, UNAIDS estimated only about 1% of total global AIDS resources was funding for community-led services.
Like us, our organisations also face many challenges to thrive and survive. Many community-led initiatives, particularly in low and middle income countries rely heavily on international funding, which is getting more and more difficult to access, due to administrative barriers, policies and legislation that limit or even block access to these funds with administrative procedures, a factor known in some of our countries as the “foreign agent” laws that also stigmatize and target those organizations that are fighting and supporting the interests of key populations.
As well, continuous application of punitive laws and criminalization of key population creates further risks of diminishing access to financial resources, particularly in countries during transition period and where political will is lacking. Many communities have already failed to register their organizations because of their reference to specific key populations. Furthermore, restrictions on the right to freedom of association and speech
have created a disabling environment for communities and civil society to undertake advocacy and community mobilization work.
After years of HIV Political Declarations affirming that communities should be at the center of all programming, Member States continue to hesitate in removing policies that remain as barriers. Without the political will to address these challenges and to fulfill the commitments made, we will fail in achieving the end of AIDS.
Community-led responses and organizations have saved many lives, including myself, and will continue to do so. I strongly urge UNAIDS to strengthen the work in supporting countries to remove the legal frameworks that hinder community-led responses.
NGO Delegate representing Europe
Intervention delivered by Alexander Pastoors
Thank you madam chair,
As a white gay man living with HIV in the Netherlands, I am in many ways privileged, especially when it comes to having access to high-quality HIV healthcare. Yet I have an obligation to look beyond my own privilege and look to those people living with HIV that are falling through the cracks in the Netherlands, other countries in Europe and, in fact, in all regions.
Although the Netherlands is among the first countries in the world to reach the 90-90-90-targets our national HIV-response faces challenges in reaching the remaining 10-10-10, among which a substantial percentage are people on the move.
There’s an ever-growing body of evidence that peer support programs and other community-led HIV-programmes are needed for and can contribute substantially in, bridging the gaps in reaching those people that either don’t access HIV healthcare services timely, are lost to follow up or can’t reach viral suppression. Structural barriers like stigma and discrimination, lack of access to comprehensive sexuality education and the lack of culturally sensitive healthcare services are SCREAMING for innovative community-led programmes and social enablers.
But in order to put these programmes effectively to work, community-led organisations need stable funding and commitment from government bodies. Yet even in a high-income setting such as the Netherlands, organisations like the Dutch association of people living with HIV struggle to find sufficient and stable funding for community-led programmes and social enablers. And we have heard many cases, around the globe, showing that in all regions, HIV organisations are lacking the capacity to keep providing services, information and to keep responding to the HIV epidemic.
In the past two years, a consortium of Dutch NGO’s set up a successful peer to peer project for people living with HIV with a migration background. Informal care and support from people living with HIV for newly diagnosed people living with HIV and those struggling with keeping engaged in HIV care showed remarkable results. Vulnerable groups of patients experienced less stigma and less treatment failure resulting in a sustained viral suppression and a better quality of life. Yet despite these encouraging results, there is no sustainable funding for further training of volunteers.
This is, unfortunately, completely in line with the finding of this report.
If we want to end AIDS by 2030 we not only have miles to go, we need to make sure that we walk these miles together with the people affected and not leave them behind. We need more and meaningful involvement of communities and individuals of people living with or affected by HIV. We need the member states to keep their funding obligations on what they signed up to in 2016, if not more.
And to put it straightforward madam Chair, it means more, sustainable and better funding of community-led programmes and socially enabling activities, not cutting back on them.
Thank you.
NGO Delegate representing Africa
Intervention delivered by Lucy Wanjiku Njenga
Thank you Madam Chair.
My name is Lucy Wanjiku Njenga from Kenya, the Team Leader with Positive Young Women Voices, a community-based organization in Nairobi working with adolescent girls and young women living with and affected by HIV. It is an honor to be the incoming African Delegate as a young woman from a CBO. It shows we are being heard and are taking our rightful places in the decision-making tables. It is with this in mind that I address doing more for community organizations’ funding.
Community action has long been acknowledged as the cornerstone of the response to the global AIDS pandemic. Many of the key innovations, breakthroughs and progress on the ground would not have happened without the involvement of communities. Despite this, and despite significant investments in the response to HIV over the past two decades, funding for community action has remained sporadic, limited, and hampered by a number of challenges, including funding systems. At the same time, many community-based organizations are receiving funding in an effective manner, and many funders have adapted their approaches to overcome these challenges.
As we look at best practices, an example is the Global Fund coming down to the level of communities in provision of funding and in their realization of how important it is not to leave adolescent girls and young women behind. They now offer a simple and efficient fund called ‘HER VOICE FUND’ that can be easily accessed by groups and community-based organizations (registered and non-registered), enabling them to be part of the Global Fund processes. Are girls and young women part of the UNAIDS processes? Yes! Are they receiving support in getting the work done as it should be in the response? No!
Young women groups are among the populations left behind. They are being pulled in a million different directions for a million different reasons without the time, space and investment to reflect and Implement their own ideas or be accountable to their peers. By the end of the day, we are not really building leadership or allowing innovation to thrive. For money to work for communities, we need to thrive out of the box. Donors have to be flexible in their funding formulas and requirements and not just ask for new tools, new programs rather than work with what is already best practices.
Thank you.