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Civil society in action at the 45th PCB Meeting
© Civil society in action at the 45th PCB Meeting

NGO Report

The 2019 NGO Report builds on the foundations laid thus far for UHC while looking ahead to its next phase, when the Political Declaration will be operationalized. During that phase, countries will contribute to achieving Sustainable Development Goal (SDG) target 3.32 and several other targets by accelerating the development and implementation of UHC plans, packages,Continue reading “UNAIDS PCB Meeting”

PCB Summary Bulletin

45th PCB Meeting | 10 January 2020

NGO Delegation’s Summary Bulletin

The NGO Delegation’s Summary Bulletin for the 45th UNAIDS PCB Meeting reflects the engagement of the NGO Delegation on all agenda items amongst which: Report by the NGO representative; Annual progress report on HIV prevention 2020; and Report on progress on actions to reduce stigma and discrimination in all its forms

Agenda items


Agenda Item 1.3 | 45th PCB Meeting

Report of the Executive Director

NGO Delegate representing Latin America and The Caribbean

Intervention delivered by Alessandra Nilo

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I would like to start by welcoming you, Winnie. Your arrival is an opportunity to renew the commitment to overcome the HIV epidemic, when UNAIDS faces immense internal and external challenges. We count on your leadership to reposition UNAIDS and make it not only a healthier organization – with a happier and more efficient team – but also turn it into a relevant multilateral organization for the sustainable development agenda.

The 2030 Agenda is an opportunity to move away from narrow views and a means to address the political social, economic, and particularly commercial determinants of health. It means addressing the structural barriers that continue to lead to inequalities, violence, stigma and discrimination that makes people living with HIV, key populations, women, and young people more vulnerable to HIV and AIDS, preventing us to fully implement the evidence-based and rights-based approaches you just mentioned in your speech.

We care about UNAIDS and we are concerned with this geopolitical context were we face attacks against rights and multilateralism, with more restricted civic space in the majority of the countries. Countries that used to be champions in the AIDS response are now attacking key populations, including indigenous people, defunding women’s programs, and denying evidence, such as climate emergency. It is a shame that here at the UNAIDS board, we cannot even approve language on areas proven to be essential to win AIDS, such as sexual and reproductive health and rights, harm reduction and criminalization.

In such a context, we welcome your feminist approach. It gives us hope that we may restore HUMAN RIGHTS as an essential agenda within UNAIDS. And we shall not go back on the rights we have won.

With your arrival, we don’t expect UNAIDS to build “a new everything”, but fully implement what works, scale up good practices and eradicate the bad     ones. We are ready to support this new journey that contributes not only to achieving the UHC targets, but the interlinked SDGs. Because, by now, despite the resolutions and declarations, people continue to die every day, particularly in medium and low-income countries.

Therefore, we have some unfinished business for UNAIDS:

Unregulated and unfair trade relations continue to undermine our response and intellectual property continues to impact access to prevention and treatment. Besides increased domestic investments and the fulfillment of ODA, let’s support progressive taxation and curb illicit financial flows so we can have more funds to health. In house, a new fundraising model, with innovative financing strategies, will help to get fully funded UNAIDS.

We won’t end AIDS soon, so we need strategies that effectively puts our communities – fully funded and supported – at the center. It is time to leave all fancy slogans. And regain the community’s confidence back to UNAIDS.

We wish you all strength and energy to take your task forward. We believe you can make a difference by changing UNAIDS into an exemplar and feminist institution, accountable at all levels. Thank you!

NGO Delegate representing Africa

Intervention delivered by Jonathan Gunthorp

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Welcome, Executive Director. We hope by now that you know how delighted we are to have your leadership in UNAIDS. We agree with you and with the most credible observers of the response that we are not on track to eliminate AIDS as a public health threat by 2030. You have remarked on some of the indicators of this; our communities, of course, bear the marks of many more.

What we do now and in future

We must reorient our health systems to cope with the coming decades of treatment and the scores of millions who will need support as well as quality of life.

At the centre of our ‘people-centred’ approaches must be people living with HIV, sex workers, LGBTI people, people who use drugs, women, and young people. We must face head-on and not shy away from their issues and their needs. Failure to do so will reverse much of our progress.

We must stare our multiple failures in prevention in the face. In Africa we spoke for many years language that “you cannot keep the bucket from overflowing if you do not ‘turn off the tap.’” As a global community, as the Global Fund, as ODA providers, and as a joint programme, we have ignored the tap of incidence for too long while seeking greater and greater resources for bigger and bigger buckets. This must change.

Who we are and how we organise

How we rejuvenate the global response speaks to who we need to be in order to succeed.

We are delighted to hear you bring a feminist approach, and we hope to see it internally, as well as externally.

We also need a younger Secretariat if we are to serve young people in the response.

And we need people who believe in your vision of a right-based response. UNAIDS has worked best when it has spoken truth and evidence to power, not when it has cozied up to power. We need UNAIDS leaders, at every level, brave and true to this vision.

Executive Director, existing tools and strategies, and this joint programme designated to lead on them, are currently insufficient. Under your leadership this must change. Time is not on your side. But you have our support. Let’s do this.


Agenda Item 1.4 | 45th PCB Meeting

Report by the NGO representative

NGO Delegate representing Africa

Intervention delivered by Lucy Wanjiku Njenga

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In June 2011, I was a scared 19-year-old who had given birth to a baby boy living in the slums of Dandora, Kenya, with only a High school certificate. In Geneva at the WHO, the 28th PCB Meeting was happening and Agenda item 11.5 was a report on Gender – sensitivity of AIDS Response. In the report, paragraph 13 had me and the young women in mind when it was written. It spoke to the poverty I was living in and harmful social norms like my then-boyfriend making contraceptive choices for me, as I thought it to be love. These were factors that led to me to be a new HIV infection and still are the factors that lead to poor sexual and reproductive health and rights today. Girls and young women still bear the biggest burden of HIV and yet we have to walk on eggshells of language around the mention of what is most basic for us, sexual and reproductive health and rights.

 I will not be left behind!

I will not be erased!

We do not cease to exist and our issues do not disappear if we are removed from a document. When an issue concerning me or the constituency I represent is removed and ignored, it is the people behind the issue that are, not the language.

UHC is taking another biomedical turn and still leaving people living with HIV, young people, adolescent girls and young women, and key populations behind. Even a Kenyan like me who is a leader in the HIV response, is not fully engaged in UHC discussions in a piloting country, for truly it is not inclusive of us all. This is another turn that pushes civil society away from the table, that discourages them from achieving their goals for space and the resources continue to shrink day in and day out.

Now that I am in this space, I call upon member states and co-sponsors to reflect keenly on what it means to remove someone from a report or a document. These numbers we keep referring to are not just number: 460 adolescent girls infected daily is not just a number, this was me in 2011, this is my friend, my sister, my colleague in 2019. Yet, we continue to ignore the root cause of why I am sitting here today and the reason why Jeni will cry herself to sleep tonight when she’s tested HIV Positive. If it is to be truly universal, UHC will not leave me behind, it will not leave us behind.

NGO Delegate representing North America

Intervention delivered by Wangari Tharao

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Criminalization of sex work, drug use, consensual same-sex relationships, gender identity and non-disclosure of HIV-positive status continue to cause people living with HIV, key populations, migrants, women, and young people to fall between the cracks in the era of leaving no one behind. 

The NGO report calls for the creation of an enabling environment to help address the relevant structural and regulatory barriers including stigma and discrimination, that prevent access to comprehensive HIV services and health-related programs.

This is one of the greatest lessons we have learned from the HIV response, that ongoing criminalization of people and their communities will continue to impede success in controlling the epidemic. It is a lesson few countries have heeded in their HIV responses. We continue to see laws that limit the rights of migrants, women and young people, people who use drugs, sex workers, LGBT people, and people living with HIV. If it has not been resolved in our HIV responses over the years, what magic wand do we hope to wave to resolve it within UHC? Or are we hoping to pass the buck on to someone else?

I give an example of Canada, a country with one of the highest rates of criminalization of HIV non-disclosure with Black men bearing the disproportionate burden of the charges. People living with HIV are criminally charged, prosecuted, or threatened with charges because they had been alleged to not tell sex partners of their HIV-positive status. Some people have been given sentences of more than 10 years and have had to register as sex offenders when they leave prison. A Canadian coalition has been fighting criminalization of HIV non-disclosure for years and based on their work, the Canadian PM promised that if he was elected back in office he will repeal these discriminatory laws.

Other communities across the world have been fighting similar battles to deal with issues of criminalization e.g. Kenya’s Penal Code, which criminalizes same-sex activity, remained intact following a High Court ruling rejecting a petition calling for the decriminalization of homosexuality in the country. I also do not need to remind you that thousands of people in Asia have been killed or put in prison in the name of the war on drugs.

Key populations and their community-led organizations are doing their part even amid very unsafe and dangerous circumstances. We call on MS to do their part in putting a stop to human rights violations to enable access to health for people living with HIV, key populations, women and young people. Leaving no one behind will require challenging the status quo and the business as usual models that continue to fail us.

Thank you.

NGO Delegate representing Asia and The Pacific

Presentation delivered by Jules Kim

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Good morning, colleagues.

My name is Jules Kim and I am an NGO Delegate for the Asia Pacific Region. Among the many things that make up my identity and my life, I am a sex worker– a member of a marginalized and excluded community and, in the context of HIV, a key population.

For those of you who are new to the PCB, may I explain that – as part of our terms of reference as an NGO Delegation – once a year, we write a report on a subject of our choice and present it to the PCB. Part of the value of our Delegation is that we bring to the table issues that may be less well understood, or of a lower priority, for other stakeholders. The subject of our report is decided through consultation – listening to and learning about the real life experiences and challenges of our civil society constituents.

For 2019, our report to the PCB is entitled If It Is To Be Truly Universal: Why Universal Health Coverage Will Not Succeed Without People Living With HIV And Other Key Populations, Women And Young People.

The report was informed by many hundreds of organizations, networks and activists across the world – through a literature review, interviews, focus group discussions and case studies.

However, perhaps you’re wondering: Why are they talking about universal health coverage again? Didn’t we discuss it at the PCB thematic session in June? And didn’t September see the first ever United Nations High Level Meeting on Universal Health Coverage? 

Well, yes, Universal Health Coverage has already been the subject of much discussion this year. And, yes, we now have a UN Political Declaration in place – undeniably providing an important, new tool for advocacy and accountability.

However, for us, as the NGO Delegation, it is a very conscious decision to return to the subject. This is because, for many of our communities and constituencies, Universal Health Coverage is just beginning. And for some us such as our colleagues in places such as PNG, it is a foreign concept admist the context of ARV stock outs, the highest rates of anti retroviral resistance, and even challenges to accessing clean water.

While the Political Declaration outlines important concepts and ideas, it is its implementation that will matter. Only if the Declaration is fully operationalized – through each country’s plans, packages and budgets – will Universal Health Coverage be a successful strategy, one that is truly universal.

Since we met in June, I wonder how many times the words ‘leave no one behind’ have been uttered in rooms similar to this. However, while it is easy to perpetuate the rhetoric, it is much more difficult to ensure that such mantras are translated into practice – through universal health coverage that includes everyone, including those most marginalized.

In our Delegation’s 2019 report, we use evidence from around the world to show how Universal Health Coverage cansucceed and can be truly universal … but only if it embraces, engages and resources people living with HIV, other key populations – namely sex workers, trans people, people who use drugs and gay men and other men who have sex work men – and also women and young people.

The evidence that we have shared with you is significant, diverse and compelling. It is grouped around six key contributions that such community members – and their organizations and networks – can make to Universal Health Coverage.

The first contribution that we highlight is identifying and reaching those most marginalized or in conditions of vulnerability.

People living with HIV and other key populations, women and children are best placed to ‘reach the last mile’ – in terms of identifying and targeting those community members who are traditionally most marginalized and excluded. The organisations and networks of and for such populations bring decades of experience and understanding in such strategies, based on their unique role within the response to HIV. They have established reputations, provide consistency and are trusted by local people.

The Organisations and networks of and for people living with HIV and other key populations, women and young people can ensure that universal health coverage reaches everyone. This includes those communities that other stakeholders may not find it possible or desirable to reach.

Secondly, our report looks at the contribution of addressing the social and economic determinants of health.

Health is not just about bio-medical problems and interventions. Universal health coverage will only succeed if it removes the structural barriers to health (such as gender inequality and criminalisation) and if it facilitates the social enablers (such as stigma reduction and legal reform).

These are not ‘soft’ subjects or ‘optional extras’. They are essential to a human beings’ health and wellbeing. I know from my own experiences that, even where health services are available, for many of us community members, we can not access them if we feel unsafe, disliked, discriminated, judged or at risk of arrest.

Throughout the response to HIV, it is people living with HIV and other key populations, women and young people, who have had the courage and smart thinking to stand up for their rights and push for equity – fighting against harmful policies and social norms, and demanding change. They can now bring their passion and expertise to universal health coverage.

The third contribution we highlight is providing person-centered, integrated and community-led services.

Organizations and networks of people living with HIV and other key populations, women and young people have shown that they can not only work at scale. They can also – whether for HIV or UHC – provide high quality, tailor made and people centered services, that make the difference to people and pandemics alike.

They know – often from bitter experience of mainstream interventions – that a ‘one size fits all’ approach is not good enough. And it simply doesn’t work. Instead, what’s needed are responses to health that recognize community members as individual, whole people – who may have specific health risks and needs, but who also have a wide range of other needs that require attention in order to achieve wellbeing. Interventions need to be user-friendly – not only respecting basic good practice (such as being confidential and non-judgmental), but being culturally competent.

Cost is also an unavoidable factor in any discussion about Universal Health Coverage. Here, too, people living with HIV and other key populations, women and young people can contribute – by developing cost effective and sustainable models. Their organizations and networks – predominantly working at the level of primary health care, have long worked in low resource contexts, maximizing existing resources and working towards sustainability.

Our responses to HIV not only enable universal health coverage to ‘shorten the learning curve’ and give ‘value for money’. It provides proven and economical infrastructure – such as with trained volunteers, innovative outreach systems and established referral networks. Such assets are invaluable in all contexts, but especially those of transition and sustainability – where international resourcing is declining and where the future of funding for community responses often remains unsure.

In our report, we also look at the contribution played by our constituents in securing affordable and accessible medicines for HIV – another set of experiences and lessons that can be transferred to universal health coverage. People living with HIV and other key populations, women and children have driven a healthy equity agenda for HIV – within which a person’s economic status is seen as determinant of their health. Here, it is vital that medicines – and other commodities – are not only high quality, but affordable – helping to avoid catastrophic financial implications for people and their families. As with HIV, universal health coverage will benefit from a scenario whereby, for example, the patenting and costing of drugs is informed by ethics and access, as well as profits.

The final contribution that is highlighted in our report is the role of people living with HIV and other key populations, women and young people, in ensuring multi-sectoral governance and accountability.

This meeting here today – where we as NGO representatives sit alongside Member States – is an example of how the response to HIV has changed the paradigm of health governance. Other bodies – from National AIDS Programmes to Global Fund Country Coordinating Mechanisms – have created expectations that representatives such as myself now not only have a seat the table, but a voice and influence.

From local to national to global – people living with HIV and other key populations, women and children – have brought their lived experience, their evidence and their asks to forums such as this, ensuring a unique and powerful perspective. They have also played a ground-breaking role as ‘watchdogs’ – holding other stakeholders to account for their performance and results.

To summarise, we – the NGO Delegation – want to highlight six key contributions that people living with HIV and other key populations, women and young people can – and must – make to universal health coverage. These are:

  • Identifying and reaching those most marginalized or in conditions of vulnerability.
  • Addressing the social and economic determinants of health.
  • Providing person-centered, integrated, and community-led services.
  • Developing cost-effective and sustainable models.
  • Securing affordable and accessible medicines.
  • Ensuring multisectoral governance and accountability.

As we discussed back in June, at the PCB’s Thematic Session – that it is not just about HIV helping universal health coverage. If universal health coverage works – in terms of being truly universal, being of high quality and having impact – it will help HIV. It will help to ‘end AIDS’, to achieve the ’90-90-90s’ and to ‘fast track’ the response.

Going forwards, if the contributions of people living with HIV and other key populations, women and young people are rejected or under-utilized – neither UHC or the response to HIV will succeed. Both will leave people behind. Neither will be truly universal.

To make sure this doesn’t happen, we need your help. Everyone – but especially you, as members of the PCB and as leaders of your constituencies – has a role.

This role requires us to recognize what we already know and to recall the commitments we have already made. For example, this involves recognizing that the future global response to HIV should focus on, and speed up the gains made in, protecting and supporting people living with HIV and other key populations, women and young people. Action should also focus on the wider social, economic and structural drivers – in order to both further address HIV and to reach the world’s broader global health goals.

This also involves recalling previous PCB commitments – such as to the essential role of communities and the importance of integrating HIV and other health programmes – as well as Member States’ new commitments to the Political Declaration on Universal Health Coverage.

We also, however, call on you to take new steps to strengthen our action together. This includes new Decision Points focusing on continued support from UNAIDS to Member States to: create enabling environments for people living with HIV and other key populations, women and young people; and to ensure the continued provision of all elements of comprehensive HIV programming under universal health coverage.

We also call on you to ensure the development of approaches to monitor and report on the engagement of organizations of and for people living with HIV and other key populations, women and young people in the strategies and frameworks for universal health coverage.

Finally, we – as representatives of those communities who, too often, are the most affected by ill health and social injustices – call on you to commit to making ‘leave no one behind’ a reality, rather than rhetoric. We ask you to ‘put the last mile first’ – by placing people living with HIV and other key populations, women and young people at the heart – rather than on the sidelines – of universal health coverage.

Thank you for listening.


Agenda Item 3 | 45th PCB Meeting

Annual progress report on HIV prevention 2020

NGO Delegate representing Asia and The Pacific

Intervention delivered by Aditia Taslim Lim

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Two years ago, we agreed that despite the progress in reducing new HIV infections globally, we were still off-track in reaching the global targets and commitments. Particularly, we have asked Member States, stakeholders and partners to take bold and decisive actions to scale up prevention programmes, including the promised investment for prevention.

Two years doesn’t seem to be enough to see how much we have come in meeting those commitments. And we recognise progress has been made through the Global HIV Prevention Coalition, which now includes 28 countries in implementing the HIV Prevention 2020 roadmap.

However, we agreed to have bold and decisive actions. Have we been bold and decisive enough to prevent HIV?

In the last two years, we have seen similar trends, and worse, increasing trend of new HIV infection in some countries, including among those members of the Prevention Coalition. We need to see more than just this. This is business as usual. 

The communities of key populations and all people who are at risk of HIV, do not have time, especially when many countries are unwilling to act on evidence. Important commodities remain unavailable in many countries, including condoms for both male and female – that remain inaccessible and harm reduction programmes that continue to be underfunded in many parts of the world.

There is no doubt about why we need to ensure that access to these commodities is non-negotiable. Previous discussions have taken place, including at previous PCB meetings. However, we must ask ourselves a question. Why are we still debating what has been proven  to be effective in preventing new HIV infections?

I still have a vivid image of myself, almost 20 years ago, trying to pick up a needle on the street. I had no choice as there was no way I could get this kind of service anywhere. Harm reduction has saved a lot of lives, we have plenty of data that affirms this. But our delegation is very concerned with more and more limitations to discuss, address and even mention these two words – harm reduction – in an important forum such as the PCB and other high-level meetings.

You are dealing with people’s lives. We are human beings with human rights that you have the obligation to protect.

NGO Delegate representing Africa

Intervention delivered by Jonathan Gunthorp

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Chair, I wish to speak as an Africa delegate in this NGO delegation, and I wish to speak about adolescents and prevention, an area in which many in the global response appear confused.

Allow me to begin with an anecdote. Last year I was in the field with young people, donors, national AIDS commission staff, and community leaders. The local religious leader then stepped forward to say that he gave the sexual education lessons in the school, and he wanted to assure us that he told children that teenage pregnancy was wrong, and that unprotected sex was wrong and could lead to acquiring HIV. As we were nodding our agreement, he continued to say that that sex education was wrong, contraception was wrong, condoms were wrong, and that sex would send children to hell.

Madam Chair, you cannot simultaneously believe in evidence and live in a make believe world. You cannot simultaneously wish to keep a nation’s children from harm, and yet keep from them the knowledge and tools they need to navigate safe pathways to adulthood. You cannot combat HIV in a world where a significant portion of new infections are among adolescents, without listening to adolescents and without tailoring solutions to their real needs.

If prevention is to work, adolescents need access to age relevant sexual and reproductive education and information; they need access to counselling related to sexual and reproductive health, HIV, health, and navigating adolescence more broadly. And they need access to a full range of sexual and reproductive & HIV services, not just in the health facilities which they fear and stay away from, but in places where they live, pray, play, and learn.

Prevention for adolescents and young people must be based on the young people we have, not the young people we wish we had. Failure to do so will lead to tens of millions more acquiring HIV.

NGO Delegate representing Latin America and The Caribbean

Intervention delivered by Violeta Ross

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The Annual Progress Report on HIV Prevention is far too optimistic. If there was one are of failure in the global AIDS response, that is prevention, we are so late, so behind in terms of HIV prevention.

The report talks about having robust equitable comprehensive prevention plans and making “bold decisions”. Have we done that?

The Global Coalition on HIV prevention has existed for two years and it raised the political profile of HIV prevention but it has to be accountable. This board and every member state has to be accountable on its work in HIV prevention.

In Bolivia my country, the national government pays 95% of antiretroviral treatment, but invest little or nothing in HIV prevention. The Global Fund funds small prevention programs for key populations.

There are many examples of our failure in responding to HIV prevention, but one that I can personally testify is the lack of integrated programs to address the interconnections between HIV and gender based violence.Violence is not an exclusive issue of women but affects us disproportionately and yes, violence increases our vulnerability to HIV and vice versa, as a survivor or rape and intimate partner violence, as a woman living with HIV I can witness this reality.

In conclusion, HIV prevention will not be successful if we do not make justice, bring equity, if we do not speak honestly about sex, sexuality and pleasure. The progress in HIV prevention is tracked with the quality of our policies, the level of participation of people living with HIV, key populations, women, and young people locally. As Member States, do you know our needs? How much of your national health budgets are you investing in HIV prevention?


Agenda Item 4 | 45th PCB Meeting

Progress report on the barriers to effective funding of community-led responses by international and private funders as well as better understanding of the challenges faced by national governments in allocating funding to communities’ responses

NGO Delegate representing Europe

Intervention delivered by Valeriia Rachynska

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Thank you everyone for understanding the importance of engaging community-led organizations in the response to HIV.

We are not just communities or key populations, we are also professionals and experts who are people living with HIV, LGBT people, former prisoners and migrants, young girls and women, people with TB, people who inject drugs and sex workers united by a common goal of responding to this epidemic. 

The shrinking spaces for community led organizations are reducing opportunities for experts like us, to act. We do not only provide services, but also address the removal of structural barriers to access to HIV prevention, care and support services. 

For instance, CO «100% Life» (All-Ukrainian Network of PLWH) is the largest community-led organization in Ukraine that has been operating since 2001. It is one of the best examples of of community-led investments. We help more than 100,000 people stay alive and more than 100,000 stay healthy and prevent HIV transmission.

Our partners in this fight are USAID, PEPFAR and the Global Fund. Their support enabled us to prevent new infections, test for HIV, fight stigma and discrimination, which saved the lives of thousands of people, including in other countries in the region.

Through funding from WFP we have saved 7,500 lives of people living with HIV during the war in eastern Ukraine.

The support from UNFPA enabled us to develop an innovative online course on tolerance to people living with HIV, which was included by the Ministry of Health in the state program of postgraduate training for doctors.

Together with support from UNITAID and Aidsfonds, we are reducing medication prices.

The Ministry of Health of Ukraine is working with us to  reform the healthcare system, create the e-health system, and procure medicines. Recognizing the expertise and experience of community-led organizations, the state has now begun to procure from the state budget HIV prevention, care and support services by and for Key populations and PLHIV.

Who is the main beneficiary of these successes? These are 42 million citizens  of Ukraine who receive high-quality and affordable medical services, including 144,000 people living with HIV who will receive their medicines, procured and delivered on time and at the right price, who will receive high-quality care and support services and due to their undetectable  viral load will save their lives and will not be able to transmit the virus to other people.  There are about a half-million members of key populations who will receive prevention services provided in tolerant and non-discriminatory manner. 

That’s why it is extremely important to understand that without community-led investments all these successes would be impossible. And we have to guarantee continuation of community-led investments to sustain the services. 

I am now alive and healthy, because 10 years ago, the community-led organizations, with the support and financing of our partners, fought for me. For my access to treatment, for my access to services and for my life.

I call on Member States to in community-led responses. I want everyone vulnerable to HIV or living with HIV to survive. Because we are all fighting for their lives.


Agenda Item 5 | 45th PCB Meeting

Follow-up to the thematic segment from the 44th Programme Coordinating Board meeting

NGO Delegate representing North America

Intervention delivered by Wangari Tharao

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The 44th Thematic segment was very exciting for many of us who had little engagement with the UHC processes. We got an opportunity to determine how we could optimize on what we do best, discuss challenges and lessons learned in the HIV movement that could help inform UHC discussions and its eventual rollout.

As highlighted by Rico Gustav of the Global Network of People Living with HIV (GNP+) in his keynote address, “A basic principle of UHC has to be that health is not a commodity, it’s about more than pills and condoms. Health is about wellbeing, dignity and quality of life…”. How can we ensure that this broad understanding of health is translated into reality within UHC?

In Canada, we already have UHC and we see many examples where health is treated as a commodity that can be provided for free, sold, or withheld at will, based on some defined or undefined criteria. Some people are deemed to be deserving of this important commodity while others are not within a health system that is meant to be universal. Recently, a young 25-year-old Black man walked into a Canadian hospital in severe pain. He was experiencing excruciating pain at the back of his neck, vision issues, loss of senses and severe sensitivity to light. However, instead of receiving the treatment he needed, he was accused of being a drug user and faking pain in order to get opioids. At one time he was referred to as a dealer looking to get pills to go and sell or that he was imagining his pain. He visited 5 hospitals over a period of 60 days before he got the required treatment he needed.

The gatekeepers within the medical institutions had already judged him and determined that he was not deserving of the service they were delivering and they made sure he did not get it. His dignity and rights were violated and his quality of life impacted, since he did not receive the treatment he needed at the time it was required. Such experiences at the hands of healthcare providers are very common for people living with HIV, key populations, women and young people. How can we ensure this is eliminated within UHC?

We call on MS to make sure that health is not commodified within UHC and that the rights, dignity and quality of life of people living with HIV, key populations, women and young people are considered as important and are integrated into UHC as important determinants of health.

Thank you.


Agenda Item 6 | 45th PCB Meeting

Report on progress on actions to reduce stigma and discrimination in all its forms

NGO Delegate representing Europe

Intervention delivered by Valeriia Rachynska

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I would like to read the Statement of National and Regional Networks and Civil Society Organizations Regarding HIV Criminalization in the EECA Region.

HIV criminalization is a global issue that undermines human rights and impedes the development of public health and, as a result, weakens the efforts to eradicate the HIV epidemic.

The Global Commission on HIV and the Law, the United Nations Development Program (UNDP) and the Joint United Nations Program on AIDS (UNAIDS), among others, declare that any use of criminal law against people living with HIV should be strictly limited to exceptional cases of real intentional HIV transmission to another person. However, the law and law enforcement practice go beyond this limitation in many countries.

Criminalization of HIV transmission is a growing human rights issue in Eastern Europe and Central Asia. This fact is also confirmed by the first regional report, prepared in 2017 using the data of the communities of women living with HIV.

Advocacy of EECA region activists pushed Belarus to adopt an amendment stating the HIV-positive partner is exempted from criminal liability but only under some specific circumstances. This small step forward is, unfortunately, not sufficient to solve the issue of HIV criminalization.

We therefore call the attention of the EECA Member States to the fact that in a society with low stigma and discrimination, people are more likely to be voluntarily tested for HIV, learn about their status, and begin ARV treatment.

We urge communities of people living with HIV and other criminalized and marginalized communities, in particular, sex workers, LGBT people, people who use drugs, to unite and take a consolidated position to counter HIV criminalization, presenting a united front against HIV stigma and discrimination embedded in the law.

We urge governments and parliamentarians to use common law to prevent HIV transmission in a public health context, instead of applying criminal law, take steps to encourage people to be tested, receive ARV treatment, feel free to communicate their HIV status and have sex without fear of stigma, discrimination, and violence. This can be achieved by adopting and applying anti-discrimination laws and public information campaigns that are developed on the basis of scientific data and with the involvement of people living with HIV.

We urge the criminal justice system to use scientific evidence and evidence-based medicine, in particular, the scientific evidence included in the Statement of Expert Consensus on HIV infection in the criminal law framework, in pre-trial and trial proceedings, in order to limit or prevent abuse of criminal prosecution in cases of allegations of HIV transmission or risking infection or in cases of not sharing their HIV status.

We encourage donors to invest in communities and advocates opposing HIV criminalization, which is undermininghuman rights and public health.

NGO Delegate representing Latin America and The Caribbean

Intervention delivered by Alessandra Nilo

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Thank you very much for the report presented.

We are happy to see that this Partnership, proposed by the PCB NGO Delegation in 2017, and co-convened by UN Women, UNAIDS, UNDP and GNP+,  has now with more partners on board. Because of you, we now have a clearer roadmap and we are finally moving ahead with implementation at country level.  Thank you.

But, as we said yesterday, there is no time for celebration: real action is urgently needed. Few hours ago, in Brazil, we announced the results of the Stigma Index (thanks GNP+ for developing it). It was supported by UNAIDS in collaboration with partners and coordinated by Gestos, the organization I co-founded 26 years ago in Recife. Almost 2,000 interviews done indicates that 64% of the respondents experienced HIV-related stigma and/or discrimination. It is too much, right? But this is the result of many nice sounding political declarations followed by almost no funding to fight stigma and discrimination, and almost no human-rights interventions in the AIDS response.

This Partnership, though, is a vivid example that addressing some structural barriers have become more complex in the face of the advancement of hate speech and fake news, which in some countries, are perpetuated by elected officials. At this moment, our communities on the ground are losing faith in public policy. It is our duty to reverse this and stop allowing stigma and discrimination continue to be the most perverse symptom of AIDS.


Since I engaged with UNGASS-AIDS, in 2001, I have seen UNAIDS starting many new initiatives that, before fully implementing them, jump to a new one. We hope, Winnie, that under your leadership, we can change this internal culture that has led us not only to lose money, but more importantly, many lives.

By now, we must understand that the work of the Partnership requires building real synergy among the different sectors involved, and this will require adequate investment of time, expertise and funds. We cannot allow this Partnership to fail for the lack of financial resources, or because of endless processes and bureaucracy. It cannot fail either because the staff is burned out – and it is clear this partnership needs full dedicated human resources.

At this stage, political will has been shown by those stakeholders that created and invested in this Partnership. What we need now, from Member States, the Global Fund, Pepfar and other major donors, is to move from the political will to political responsibility: we need you to put the money where your mouth is.

Thank you.


Agenda Item 7 | 45th PCB Meeting

Report of the Joint Inspection Unit on the Management and Administration Review of UNAIDS

NGO Delegate representing Europe

Intervention delivered by Alexander Pastoors

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Thank you, chair.

The NGO Delegation supports the conclusion of the JIU report that the Programme Coordinating Board must be proactive in exercising its governance responsibilities in terms of oversight and accountability of UNAIDS and its secretariat as the costs are not just borne out in reputational damage, but also in material terms. If donors lack trust in the organisation, the Joint Programme will not reach a fully-funded UBRAF and UNAIDS will not be equipped to deliver on its promise. And that will be extremely damaging to the needs of people living with HIV, key populations, women and young people.

An integral change programme that takes into account the various reports that have been presented to the PCB over the last couple of years is a good step forward. The Delegation would, however, also like to see a more detailed reflection on both the formal as well as informal recommendations. It seems the focus lies on the formal recommendations because whose progress will be monitored by the JIU. Given the overlap of the JIU report with the MAP and various other drivers for change, the NGO delegation would like the change programme to reflect on all recommendations and the rationale of either their implementation or dismissal.

On the issue of oversight and accountability, the NGO delegation’s view is that the current needs of the organisation may indeed require an update of the managerial and governance structures in order to strengthen oversight by the PCB but, we carefully underscore this, we also need a strong, flexible and agile UNAIDS. Adapting managerial structures that align the Joint Programme to other organisations within the UN family may seem like a prudent and wise step by the PCB, the guiding principle has to be that UNAIDS must remain the strong voice to call out what must be called out, to name what must be named and to support those who are constantly marginalized.

The NGO delegation dreads the possible future of UNAIDS as an organisation where decisions and appointments become increasingly politicized, leaving people living with HIV, key populations, women and young people who need UNAIDS’s support most, behind. We, therefore, encourage the new ED to start an inclusive and participatory multi-stakeholder consultation to look at the strategic priorities beyond 2021, based upon the needs of people living with HIV, key populations, women and young people.  During this process, the current strategy needs to be carefully evaluated and checked regarding its factual implementation, its targets and the efficacy of its actions.

I thank you for your attention.


Agenda Item 9 | 45th PCB Meeting

Evaluation Plan

NGO Delegate representing Africa

Intervention delivered by Lucy Wanjiku Njenga

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In this year alone, every day, and I mean, every day, we have had a case of femicide reported in our Kenyan media. Many are cases that go unreported, for violence against women, in its many forms, is another social norm without dire consequences for perpetrators, especially in my region of Africa. Not to mean that any country in the world is immune, it is getting worse and the fear of being a woman keeps growing. Another number we keep referring to is 1 in 3 women have gone through sexual violence in their lifetime. If 53% of delegates present in this room are women, which adds up to 228 women, it means 76 of us have gone through sexual and gender-based violence that could range from catcalling, groping, sexual harassment, and to the extreme of it, rape. 

Like I said yesterday, it is never just numbers when it is personal, when it hits home.

The Evaluation Unit will be analysing UNAIDS impact on Gender-Based Violence in the coming year. They are already collecting data. While Gender-Based Violence has appeared for decades in policy and priorities, we still do not know how UNAIDS programming impacts Gender-Based Violence. The HIV epidemic should serve as an opportunity to fight gender-based violence, but I am afraid it hasn’t. There is a lot to evaluate and learn.

We know HIV and GBV are linked and one cannot work on HIV without measures to deal with GBV. A third or more of girls who grow up in Australia, Sweden, Kenya, and Tanzania experience childhood sexual abuse, its not only about adults. I will try not to even imagine the situation for LBTQ women or immigrants and women on the move.

UNAIDS and member states have to take seriously and invest in elimination of Sexual and Gender Based Violence if we are committed to ending AIDS in 2030 and eliminating new HIV infections. I welcome the evaluation plan for the accelerated action for this is long overdue and to thank Winnie Byanyima for her political will in prioritizing GBV. However, we need all MS in the board to support her because we need to move from political will to political responsibility. And we have to act now!

NGO Delegate representing North America

Intervention delivered by Andrew Spieldenner

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Thank you, Chair.

Evaluation is a challenge. When it is done right – with integrity and appropriate skills, tools and resources – it has the potential to push an organization to grow, to be responsible to where it’s succeeding and where it is having challenges. Evaluation asks questions that we might be uncomfortable with, but it also allows us to see more clearly and be accountable. 

UNAIDS has had irregular evaluation activities over the course of its life. Measuring what the Joint Programme and Secretariat are doing well – and where there are gaps – has not been a priority. With this new evaluation unit, we have the opportunity to change this culture and explore serious questions about the Joint Programme, at a time that we need to know why some things work where. Their work has just started with the productive collaboration of Member States, Co-Sponsor, Civil Society and technical experts. 

I have seen organizations put out evaluations that were little more than a public relations tool. Often, these are about making the implementers feel better about their work rather than any substantive review of what went right and what went wrong. I look at this Evaluation Plan – and their priorities – and I see a group of people who want to see where UNAIDS is doing its work well and where there are gaps. 

I am a gay man who has been living with HIV for 20 years. In my own country, I have been without health insurance and a job, and suffered under healthcare systems that were not built to meet my needs in a way I could afford. I am tired of bureaucracies who do not believe that the services they provide people like me are worth measuring to improve.

With this Evaluation Unit, we have a way forward to be able to assess the Joint Programme’s impact in our regions. This Evaluation Unit must develop culturally appropriate and relevant tools, and ensure they collect accurate data in-country and regionally. We have seen enough data sets where countries claim there are no LGBTI, no sex workers and no people who use drugs, groups that, by the way, were only recently formally recognized by the United Nations. But we are there, here and everywhere, and our absence from official documentation in the AIDS response, is itself a data point that must be critically examined. We expect the Evaluation Unit to go further with high quality and all means needed and reach people on the ground, and those of us involved in community-led initiatives. Don’t we have a responsibility to be accountable to the people we profess to serve?


Agenda Item 12 | 45th PCB Meeting

Thematic Segment

NGO Delegate representing Africa

Intervention delivered by Lucy Wanjiku Njenga

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It was the long wait for the results of PCR tests of my baby girl that made Prevention of Vertical Transmission hardest for me. I would postpone clinic days if my partner was unavailable and still be scared when I went to see the doctor. The six weeks test results apparently never got to the lab or were destroyed along the way, and yet I was told she was negative. Six months down the line the facility informed me that they never got the results of that first test. I got so angry and thought of it as incompetence, as I remembered how my daughter cried hard as it was a Dry Blood Spot test. I switched facilities. The administering of the prophylaxis medication with its bitterness made it almost unbearable too.

Recently, I was engaged in a field visit to see how the Point of Care -Early Infant Diagnosis (POC-EID) works and I was excited. A mother getting her child’s results in an hour and not having to suffer the pain of waiting and doubting for weeks, increases adherence, as well as clinic attendance for her and her child. This diagnostic tool however, is not available in all facilities and the treatment of children living with HIV is still not friendly to support their treatment journey.

We can’t afford to ignore children just because they are not sitting in these tables of decision-making. PEPFAR and Global Fund have to step up to ensure that treatment is child-friendly and POC -EID is scaled up in all facilities. Our children are dying, let us walk the talk!

NGO Delegate representing Europe

Intervention delivered by Dr. Karen Badalyan

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Chaque jour, 460 adolescentes sont infectées par le VIH et chaque semaine, 350 adolescentes meurent de maladies liées au SIDA.

Les maladies liées au SIDA restent la principale cause de décès pour les femmes âgées de 15 à 49 ans dans le monde, principalement parce que les femmes et les filles n’ont aucun contrôle sur leur santé et leurs droits sexuels.

45 pays à travers le monde ont encore les lois qui exigent que les personnes de moins de 18 ans obtiennent le consentement de leurs parents pour être testées pour le VIH et, donc, elles n’ont pas de droit d’accéder à des services pour protéger leur santé sexuelle et génésique.

La prévalence du VIH parmi les filles qui avaient terminé leurs études secondaires était environ la moitié de celle des filles qui ne l’avaient pas fait (8,6% contre 16,9%), ce qui signifie que nous devons investir dans l’éducation sexuelle complète dans les programmes de lutte contre le SIDA.

Dans de nombreuses cultures, la jeune fille n’a pas de pouvoir de négocier une quelconque protection dans une situation où elle a été maltraitée ou exploitée, et aussi, il y a cette idée omniprésente selon laquelle les hommes adultes devraient avoir un certain niveau d’accès au corps d’une jeune fille.  Et c’est pourquoi, dans certains contextes, les femmes qui ont subi des violences sont 50% plus susceptibles de vivre avec le VIH.

Compte tenu de toutes ces données factuelles, nous avons besoin de toute urgence d’une stratégie plus concertée et harmonisée pour lutter contre les problèmes de violence sexuelle et sexiste, d’exploitation sexuelle, d’abus et donner la priorité à l’élimination de toutes les formes de violence sexiste pour garantir la justice et la protection de samté des jeune filles.

Mon amie d’enfance, une jeune femme transgenre, une grande jeune militante pour les droits des femmes, a été violée par des chauffeurs de taxi et, après avoir découvert son diagnostic, a sauté du pont le lendemain matin et est décédée.  En l’honneur de la mémoire d’Edith et d’une autre jeune amie décédée du SIDA parce qu’elle a également été violée par 5 frères / travailleurs migrants à Moscou, notre organisation – Eurasian Key Populations Health Network – a institué un prix annuel, appelé Frida and Edita Sisters Awards.  Ce prix reconnaît le travail de jeunes qui ont fait preuve d’altruisme et de dons personnels, fournissant une assistance de qualité à d’autres jeunes populations clés. J’espère que, pour les années à venir, grâce au leadership stratégique de l’ONUSIDA, il n’y aura aucun besoin de séparer des personnes sélectionnées pour célébrer leurs travaux et l’engagement, mais tout le monde et tous les pays joueront un rôle moteur dans la promotion de l’égalité des sexes et de l’équité entre les sexes.

Our NGO Delegation

The Programme Coordinating Board (PCB) was created to serve as the governing body of UNAIDS. The PCB includes a Nongovernmental Organization (NGO) Delegation composed of five members and five alternates that represent five geographic regions: Africa, Asia and the Pacific, Europe, Latin America and the Caribbean, and North America.

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UNAIDS and the UN

UNAIDS was established in 1994 through a resolution of the UN Economic and Social Council (ECOSOC) and made operational in January 1996.

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