CIVICUS speaks to Alessandra Nilo, co-founder and Executive Director of GESTOS – HIV and AIDS, Communication and Gender, a civil society organisation (CSO) created in 1993 in Recife, Brazil. She is a member of the NGO Delegation to the Programme Coordinating Board of the Joint United Nations Programme on HIV/AIDS (UNAIDS), an institution that uniquely involves civil society in its governance board. Here, Alessandra discusses civil society’s important role in UNAIDS, her work on HIV/AIDS in the deteriorating political climate of Brazil and the growing challenge posed by anti-rights groups that oppose action on HIV/AIDS and human rights.
Can you tell us about your background and how you came to work on issues of HIV/AIDS?
I am a journalist, specialised in health and with a postgraduate qualification in diplomacy. I was also involved in student movements and workers’ and political movements. In 1993, a group of us created GESTOS. At that time, we didn’t know much about the epidemic. I lost a friend, whose family locked him in his house and wouldn’t allow us to talk to him. That was why GESTOS was born, to address the issues of people living with HIV/AIDS.
We knew that having an organisation to help people was not enough. We needed to exercise accountability. We needed to improve policies. We were pioneers because at that time we knew that gender was an important dimension, and also that without communication, we could not move forward, because it was important to involve the public and mobilise them for our cause. This is why we were named GESTOS – Seropositivity, Communication and Gender.
We started to engage with the national councils in Brazil. These are bodies established by the 1988 Federal Constitution, where government, civil society and interested parties sit together to define public policies. These were spaces where we could practise direct democracy and have direct participation. Through participation GESTOS became very close to the ministries of health and gender and we began to engage in social networks of the Latin American region.
What have been some of the impacts of the HIV/AIDS movement, in Brazil and globally?
In general Brazil’s HIV/AIDS movement is very strong. We have helped people take action to define their own responses to HIV/AIDS. Worldwide, the HIV/AIDS movement has been responsible for many breakthroughs in HIV/AIDS policies, and this happened in Brazil.
We were the first movement to start pushing that treatment was a right, rather than a commodity delivered by governments depending on whether they wanted to or had capacity. We were responsible for big discussions around sexuality that contributed to the sexual and reproductive rights movement. We built strong alliances with the feminist movement. We were the first movements to include people who use drugs, men who have sex with men, transgender people and sex workers in a global resolution at the United Nations (UN). We also engaged in debates that led to the Sustainable Development Goals. The fact that in the Agenda 2030 resolution there is a mention of people living with HIV/AIDS is because GESTOS was there as part of the Brazilian delegation and Brazil proposed this at the last minute of negotiations in New York.
The bottom line is that people living with HIV/AIDS proved at local, national and international levels to have a strong capacity to advocate for amplifying the spaces and formal sites and mechanisms for civil society participation in general.
How did civil society’s role in UNAIDS develop?
UNAIDS created the Programme Coordinating Board (PCB), UNAIDS’ governing body, in 1995 – it started operating in 1996 – and it is super innovative because it is the only governing body in the UN system that includes formal participation by civil society. It has 22 voting Member States, 11 co-sponsors, who are other UN bodies, and five civil society delegates plus five alternates, which means 10 people from civil society are involved. We have one member and one alternate per region, from Africa, Latin America and the Caribbean, North America, Asia and Europe.
The PCB is the place where the main global policies on HIV/AIDS have been discussed and formed, and these have informed other UN debates. More than that, it has informed and inspired the ways UN member states implement HIV/AIDS policies at national levels.
The rationale for civil society’s involvement lies in the fact that the HIV/AIDS movement was really based on participation. Since the beginning, people living with HIV and key populations pushed and insisted that politicians, scientists and affected people should come together and figure out how to create solutions together. We built this social movement where it was almost impossible to move forward any discussion without involving us. We were pressing since the beginning to have meaningful participation.
Because of this, when the PCB was formed, civil society was considered a very important player that had to participate. This was very innovative at that time and continues to be innovative today.
How does civil society’s involvement work in practice? How are the delegates selected and how do they connect with wider civil society?
The PCB NGO Delegation members have mandates for two years and depending on the performance of a delegate, the group can expand this mandate for one more year. Delegates are selected by current NGO PCB members. We put forward a public call, in response to which interested applicants make a submission. Shortlisted applicants are then invited to an interview panel. The panel, which consists of NGO delegates, as well as an external civil society partner or a former NGO delegate, makes a recommendation. Final deliberation and decision are done by the full Delegation.
We have a number of requirements for these candidates. One is that they should have the capacity to represent and communicate with their constituencies. It is essential to have the capacity for broader communication.
We have a very transparent process. We have a website where we publicise the calls, but also use social media to publicise the opportunity. We have a list of advisory groups, CSOs and activists who are always interested in issues of the UNAIDS PCB, and we communicate with them and involve them in preparations before, between and after the biannual PCB meetings. In recent years, we have been trying to reach out to other spheres, including groups working on issues such as sustainable development and financing for development.
Since 2008, there has also been an independent Communication and Consultation Facility (CCF) to support the NGO Delegation by providing technical, administrative and programme support. Since 2013, the CCF’s host organisation has been the Asia Pacific Network of People Living with HIV, based in Thailand. The CCF is the backbone of the NGO Delegation. It is hard to imagine how the Delegation would function effectively without it. A key objective of the CCF is to facilitate communication among the delegates and consultation with wider civil society.
What have the impacts and challenges been?
The NGO Delegation has no right to vote, but can participate in every other aspect of PCB activities. There is a very fine line between participating in deliberations and taking part in decision-making, because traditionally the PCB does not hold votes but decides by consensus. There have been so many examples where the NGO Delegation has been able to table decision points during meetings for critical agenda items, and had its points approved. Most decisions that have come out of the PCB came in one way or another after strong civil society participation.
Civil society and communities are really strong players and our voice is considered in a very respectful manner. It has been proven that with civil society participation, policies, programmes and services are designed much more efficiently and with much higher chances of working and benefiting people.
In terms of the process, since 2012, the NGO Delegation has been trying to create connections with other groups working with the UN to show them how the experience of the UNAIDS PCB accepting us and having us as formal members can be transposed to other UN bodies. We think this would be a great achievement for civil society in general. We tried to push this while the UN was having a conversation about restructuring and reforms. We talked with so many people, but it seems there is not an appetite for the UN to become more democratic in terms of the participation of civil society in formal decision-making bodies.
To have formal spaces for civil society is important, but it is not enough. There is absolutely a need to be able to inform decisions and participate in the decision-making processes of the UN at this time when, at the national and international levels, we are every day being pushed farther away from spaces for participation because of the advancement of reactionary political forces.
Although our PCB NGO Delegation succeeded, gaining formal space to participate was challenging. This is why we value it so much. If you think about the face of our movement you see people who use drugs, sex workers, men who have sex with men, LGBTQI people and women, people who have always led our movement but who have been marginalised in society. And even nowadays, stigma and discrimination continue to prevent us from reaching and accessing some places. While the HIV/AIDS movement has been successful in gaining public attention and claiming spaces, it has been very hard to do so, because stigma, prejudice and discrimination continue to fuel this epidemic.
With all these populist movements nowadays, the communities impacted on and affected by HIV/AIDS are not only the most marginalised but also the most criminalised. Criminalisation really impacts on the kind of organising we can do. In many countries in Africa and Asia, homosexuality, sex work and drug use are criminalised. There are real legal barriers for our communities that really impact on participation and engagement.
How is the restricted space for civil society in many contexts impacting on your work?
In the past decades we were fighting to improve the work that we were doing, but now we are working toward maintaining the rights we have, to resist, to recover from losses, and this is a very different game. In general, there is this trend of the space for civil society being increasingly restricted, and it is even more so for the HIV/AIDS movement because the forces opposing us are reactionary.
We are seeing different experiences in different countries. And, including in countries that were known as democratic, we have seen civil society dismantled, and colleagues in civil society forced to flee their places in order to keep some movements alive.
Besides this, in general, governments have used economic crises to justify cuts in programmes that used to have civil society participation. One very efficient way of diminishing civil society’s capacity is to cut funds, and this has happened to the HIV/AIDS movement. Until recently, we had countries investing in HIV/AIDS response, and that included investing in communities and civil society. This was working in a very progressive way, but now we have seen that resources for civil society, particularly international resources in middle-income countries, have decreased, and this has impacted negatively on our capacity to continue responding to HIV/AIDS and influencing governments.
In recent years we have seen the rise of fundamentalism and nationalism and a rejection of multilateralism in general. This has completely jeopardised the progress made in previous years in human, economic and environmental rights. Even in contexts where states had no interest in supporting civil society participation, we used to have an organisation such as UNAIDS and other international entities that could fund international networks and those networks could support national work, or could directly fund communities on the ground. This is not the case any longer. Formal space is being diminished, resources have been reduced and the groups that organise to provide support face increasing demands, because when democratic spaces shrink, public services and policies that benefit everyone in society usually suffer. And then the demand on us increases further. This equation simply does not work.
At the UNAIDS PCB itself, we see a political trend of some Member States becoming more aggressive towards CSOs, and some conservative governments questioning our model of participation. PCB meetings have seen attempts to challenge the existence of the NGO Delegation. In 2013 this was brought up by a couple of Member States that questioned the Delegation’s standing to participate in the meeting. In December 2018, a Member State questioned the recruitment process of the NGO delegates. I think the threat of the UN Economic and Social Council (ECOSOC) resolution that established the PCB being revised is always there, especially in the current climate of declining democracy in various parts of the world. If that resolution is revised, then anything can be revised.
What challenges do you now face under an extreme right-wing president In Brazil?
In Brazil, the federal government is really going after LGBTQI people, the indigenous population, people who use drugs, black people. In June the Senate approved a law to make the policy on drugs even more restrictive, going in the opposite direction to many other countries. LGBTQI people are much more scared of being visible now. Also in May, the new government issued a decree to basically shut down all civil society participation in national councils. All councils created by law will continue to function but their composition will be revised, and all councils created by decree were immediately cancelled.
The government spread confusion about civil society in relation to the Amazon Fund, which is a big international fund to which CSOs can apply to fight climate change. The government lied by stating that the fund was being misused, while what they really want is not to let civil society get funding.
Also, as soon as it took power, the government cut several contracts with CSOs. At this moment we do not know that will happen with women’s rights and human rights policies. All progressive agendas are being cut by 65 per cent, 85 per cent, 95 per cent. Can you imagine that the Environment Ministry’s fund for climate change was cut by 95 per cent? As well as being a fundamentalist and economically ultraliberal, the new President doesn’t believe in climate change, the Minister of International Affairs stated that "globalism is a cultural Marxist conspiracy" and they want to solve the violence problem by releasing weapons for the entire population. How do you deal with people like that?
Given challenges, what is needed to improve the impact of the NGO Delegation?
UNAIDS and Member States should improve the level of investment in the NGO Delegation. Because our delegation operates very differently from government delegations, we lack the resources we need to amplify our voices and our advocacy work. The reason why we have not done more structured advocacy work in other areas of the UN is that we never have funds for that.
We also need more support in terms of communications, because we would like to do more campaigns around the results of our work and publicise key debates happening at the PCB, including intensifying our communication about the unique role of the PCB and civil society’s role within it.
More generally, how can the challenges that HIV/AIDS-related civil society is facing be addressed?
We need to improve our capacity to communicate and amplify our voice. If we could do that, people would pay more attention and value more what we do. It would be helpful if people could understand that the HIV/AIDS movement is an important part of the development agenda.
We need to reshape the entire conversation about international cooperation and decision-making in terms of the allocation of funds for communities and civil society. Decisions not to support countries because of their income levels are flawed. Brazil, for example, is defined as a middle-income country; as a result, over the past 10 years or so international cooperation agencies have withdrawn from Brazil. As a consequence of the low capacity to respond to right-wing fundamentalism, repressive forces have flourished. We need to go back to the basics, to our peers, to frontline groups, to political education. Conservative forces were just hidden and waiting for the moment to rise again. And they did so with discourse filled with falsities, for instance claiming to oppose corruption, an issue that has dominated in Brazil in the past years.
In countries with repressive right-wing leaders – such as Brazil, Hungary and the Philippines – civil society is doing its best to respond on several fronts despite lack of funding. Luckily for humanity, some people are born activists and do this work whether there is money or not. But I truly believe that, in order to keep our movement sustainable, we have to engage more deeply in global discussions about how to fund an independent civil society, one that does not rely upon states to raise funds and therefore remains independent of government decisions.
Given the impossibility of engaging with the federal government, another response in Brazil is to engage more with sub-national authorities and parliament. More connections are needed at the sub-national level, where it is possible to identify many people who support our causes.
Another idea is to make more use of litigation: to use legal frameworks to maintain the agenda. But, again, we need funds to do that.
For the UN, we need to be mindful about institutional reforms that are taking place and be vigilant. We need innovative mechanisms and funds that can help make the UN more independent of Member States, and to increase civil society capacity to play a bigger part. There should not be such distance between the international and national levels. People on the ground can benefit from discussions at the global level, and international discussions should be informed by the desires of people on the ground. People on the ground need to know why multilateralism is important, what the UN is, what UNAIDS is, why they matter. But it is hard when international cooperation funds keep shrinking and most organisations are relegated to providing services rather than advocating for rights, developing capacity and enabling new activists.
The issue of restricted space for civil society connects us all, independently of our field of action. Therefore it is crucial to have cross-movement dialogues and open conversations, because this is where we can build resilience and solidarity and support each other. We need different sectors to come together to keep growing and not to be intimidated into silence by forces that are sometimes literally killing us. We cannot be isolated in our own agendas. We really need a global civil society movement that stands together for all rights.
We are in a very delicate movement for democracy where social media and education play a crucial role. Communication is also a major issue for social movements. At this point in history we should be able to communicate better. What is our role? What is our success story in terms of supporting and strengthening democracy? Well, if you look at history, you will see that our role is essential and that most existing rights resulted from civil society demands and victories. Because without meaningful community and civil society participation there is no sustainable development, there is no democracy, and it is unlikely that public policies can be translated into services and programmes that really serve the needs of people.
Civic space in Brazil is rated as ‘obstructed’ by the CIVICUS Monitor.