Without Addressing Human Rights We Will Never Halt the HIV/AIDS Pandemic

Winnie Byanyima

Winnie Byanyima answered these questions drafted by the UNAIDS Reference Group on HIV and Human Rights and posed by the Health and Human Rights Journal when she was a candidate for the position of Executive Director of UNAIDS

HHRJ: What do you see as the importance of human rights in the response to HIV, globally and at country level?

I have lived with the story of HIV/AIDS for most of my adult life. I first came to understand it when I was in the liberation struggle for my country (Uganda) and heard the details about HIV transmission on the BBC. When I heard about it, and knew that it was sexually transmitted, I said to my friends that the disease would never be resolved unless the rights of women were realized. They laughed at me and said “why do you inject women’s rights everywhere?” Yet I was surprised how long it took for a rights-based and gender-focus approach to take hold. In those years, I lost my brother to AIDS because he feared the stigma he would face if he went to the clinic for treatment, even though I had managed to negotiate for him to access treatment in an early ART programme in Uganda. He is one of many relatives and friends I have lost to this disease. The story of my country, and my continent, is that we have all lost too many friends and loved ones.

So, I would say that human rights are inextricably linked to the reality of HIV/AIDS and that without addressing human rights more fully we will never halt the pandemic. 

Tremendous progress has been made in fighting the pandemic—that we now have 23 million people on treatment is a remarkable achievement. The response that has been built is unprecedented in the world. But still, the response is not on track to meet the 2020 Fast Track goals. The reason, I believe, is that those that have been left behind are largely those whose human rights have been denied—who face discrimination of one kind or another. Here I mean young women, particularly African, who are not able to negotiate sex, whose rights to their bodies are denied by societies, and who are too often subject to violence. I mean gay men and other men who have sex with men and transgender people who are stigmatized and often criminalized. I mean people who use drugs and sex workers who are so often subject to violence and oppression at the hands of the state.

We must respect the rights of these communities because it is the right thing to do. But also, because violations of their rights prevents people from accessing the treatment and prevention tools they need to stop HIV. UNAIDS has to be a voice for people whose rights are being denied, at both the global and country level. UNAIDS must call for resources for marginalized and criminalized communities to realize their agency and their rights. This means making sure that civil society groups led by these communities are funded and have the civic space to lead this important work.

Really this is all about human rights. The agenda of “leave no one behind” is a human rights agenda. People are left behind when they are denied their rights. All people have a right to enjoy the best quality of healthcare and quality of life. This is about dignity. All my life I have been fighting for human rights on various fronts. Advancing these important struggles is what inspires me most about the possibility of leading UNAIDS.

HHRJ: As countries seek to achieve “epidemic transition,” what are the key human rights concerns that are most important to address, including for specific populations and communities particularly affected by HIV?

There are many priorities on human rights in HIV at the global level, but let me mention a few.

One is the challenge of keeping this pandemic on the global development agenda as a priority and ensuring it is sufficiently financed. Last year nearly $1 billion was withdrawn from the AIDS response. This, to me, is a human rights issue because access to high quality treatment and prevention is a human right. We have made so much progress against this pandemic because resources were raised to put people living with HIV on treatment, because of the struggle to bring the prices of critical medicines down, and also because of innovations in diagnostics, prevention, and service delivery to reach communities excluded from traditional public health approaches and health systems. All this requires resources. And further work is urgently needed. This is a human rights challenge because when resources are scarce we know those with the weakest rights protections often lose out. Harm reduction, for example, is severely underfunded because people who inject drugs are denied support. I am very concerned about a false sense that the fight has been won.

We also have to work on decriminalization so that sex workers, people who use drugs, LGBT people, and others can thrive. This does not cost a lot of money but it does require political leadership. Beyond changing laws and policies, we also have to talk about how to ensure treatment is friendly for young people and for key populations. Clearly many people are still not accessing services that meet their needs. We know this because too many people living with HIV are still not on treatment. And far too many are falling out of care every year. We have to deal with laws, policies, police and enforcement, health workers’ attitudes, and make sure that the rights of all people are respected and promoted before many people will test, get on treatment, and stay on treatment. As we come closer and closer to epidemic transition, as we reach those who are well-served by the current system, it becomes more and more a battle of advancing human rights and addressing social determinants to reach those who have been left out or pushed out. Putting the last mile first!

HHRJ: How should attention to human rights—including gender equality—be organized within the UNAIDS Secretariat and the Joint Programme? Do you think this work should be expanded, reduced, or maintained at about the same level it is currently?

I would not claim to know at this point exactly how the Secretariat might best be organized, without engaging with more stakeholders. But the starting point has to be with the epidemiology. We know that those facing highest risks of transmission and of death are people facing human and women’s rights challenges—including young women and key populations. It is too easy to take a medical approach to this pandemic and de-emphasize the social drivers of the epidemic. It is so important, especially as we come to the later stages of this struggle, to understand and address the structural determinants of this pandemic. The reality is that the core drivers of this pandemic are rooted in human rights struggles. Dealing with these structural drivers is an important part of what UNAIDS brings to the table. So, we know that issues of power and social norms have to be a key part of our work in the coming years. This cannot be deemphasized, it can only be a bigger part of the work of UNAIDS. I do think there are ways to deepen the synergies among co-sponsors, particularly at the country-level, to increase the impact. Here I would hope that engaging the Human Rights Council in meaningful ways could be expanded to address issues of people who use drugs in particular; that collaborations with the United Nations Population Fund (UNFPA) and UN Women could mobilize a greater part of the women’s movement to address the higher vulnerability of young women; that engaging the International Labour Organization (ILO) could help tackle issues of sex workers rights, and that we might engage the International Monetary Fund (IMF) and World Bank in deeper ways on the HIV and human rights implications of the decisions made on the raising and spending of domestic resources. We need a UNAIDS that leads within the UN system for the rights of people living with and at risk of HIV.

HHRJ: How will you address the concerns and recommendations regarding sexual harassment, bullying and abuse of power within the UNAIDS Secretariat that have been laid out in the report of the Independent Expert Panel released in 2018? As the head of the UNAIDS Secretariat, how would you ensure transparency in management’s efforts to address those concerns and ensure a workplace that is safe and respectful?

There are two sides to tackling sexual harassment and abuse of power. First, it is about mobilizing UNAIDS staff around a renewed culture—a feminist culture that is consistent with UN values and that lifts them up to be people who are respected and who have a safe and dignified workplace. Second, we need to put in place policies, systems, and practices that do not allow impunity so that if improper communication is happening, if someone is attacked, if harassment is detected, it is reported immediately and acted upon immediately. We need whistleblowing mechanisms that are safe, transparent, and friendly to all staff. But then the core question is how reports of unsafe behaviour are picked up and responded to. A fair process of investigation that is efficient, victim-centered and avoids doubly victimizing those who report such abuses, but provides support to victims/survivors, is key. It is also important to have a feedback mechanism that allows the victim to know what has been decided and for others affected on the staff to know as well. I think about this as a whole “supply chain” that includes the right policies, capacities, training. This is not rocket science; it has been done in multiple settings. What I’ve learned, through hard work at Oxfam, is that it takes leadership at all levels in the organization and a serious commitment to transparency; that you can both respect confidentiality and ensure that your staff, your donors, and the public can see that nothing is being hidden and the organization is committed to acting.