AIDS and human rights are inextricably linked as demonstrated by Beatrice Were, a leading advocate for the rights of people living with HIV in Uganda who recently received the Human Rights Watch Defender Award in recognition of her work.

Mrs. Were is the co-founder of the National Community of Women Living with AIDS (NACWOLA), a grassroots organization that provides services to more than 40,000 women in 20 districts of Uganda. She has served as Executive Coordinator of the International Community of Women Living with HIV/AIDS, Uganda, has worked with UNAIDS over the years and was formerly a member of the UNAIDS Reference Group on HIV and Human Rights. Beatrice Were is currently working as the National HIV/AIDS coordinator for ActionAID International and has collaborated with different organizations to re-address the HIV prevention policies towards a more evidence and rights based response to AIDS in Uganda.

Beatrice Were talks to UNAIDS about the implications of the award on her work and on the rights of people living with HIV.

What does this award mean to you?

Basically this award means that my work is being recognised but also, in a much broader sense, it means that there is recognition of HIV as a Human Rights issue and more specifically there is recognition of the rights of women living with HIV. This award has also challenged me to do more to sustain the visibility of the rights of the people living with HIV as part of the Human Rights.

Is this award going to have any repercussions on your work?

As an HIV positive activist, my work towards the promotion of Human Rights and specially those of women living with HIV has been regarded by governments or scientists as emotional or unscientific. The award gives me the opportunity to show that contributions from activists like me and contributions from women living with HIV are essential to an effective response to AIDS and specifically in protecting the rights of people living with HIV.

Please, tell us about your professional trajectory.

I started from the grassroots level by working with home-based-care programmes for people living with HIV. Soon after, I decided to start an organization to support women living with HIV, addressing issues of property rights, doing advocacy, awareness raising and fighting stigma and discrimination. Today I focus my work on policy issues, accountability and critical engagement with government, donors and stakeholders to ensure that HIV is treated as a Human Rights issue. I’m also working to address gender inequality and access to treatment and prevention as well as dealing with issues of government corruption on abuse of funds committed to AIDS programmes.

What inspires your work?

After my husband’s death, I also tested HIV positive. My in-laws wanted to grab my property, take my children and marry me to my brother in law. Although I was still a young woman then I struggled, I fought back for my rights and I started speaking out. My inspiration today comes from the fact that what I started as a personal struggle when my own rights were abused has helped and improved the live of thousands of women. I am encouraged because I have seen that the power that lies within me has changed things and I believe that any woman once they are informed and supported can also make that change happen.

What do you think the role of the community is in promoting human rights in relation to HIV?

First of all communities need to be conscious that human rights are not a favour from government, that they own those rights and that they have the power to demand governments, NGOs and civil society to respect and fulfil those rights. Communities can do a lot by mobilising themselves and use the power of numbers to speak loud to address human rights and HIV, issues of property rights of women, gender violence or marital rape. The other thing that communities can do is protect the rights of people affected by HIV by respecting them and reducing stigma. The engagement of community leaders is particularly important to lead this process.

What has changed in the last ten years in Uganda?

On the positive side, what has changed is the recognition, even up to the UN level, that people living with HIV are critical partners in the response to the epidemic. There is also consciousness and high level of awareness of women’s rights and to some extent acknowledgement of those rights has been important. However, on the negative side, what is changing in Uganda is that we are seeing a new wave of stigma through a moralisation of the disease by new and radical evangelical groups. The influence of US policy on Uganda’s prevention strategy is undermining the efforts that Uganda has made in the last 25 years. There is also corruption in Uganda, embezzlement of the Global Fund money, reduced political will by government over HIV prevention and care programmes, and when a lot of money is coming into the country to strengthen the health system, we are seeing ARVs expiring and an incompetent health system unable to deliver antiretroviral therapy to the 130.000 Ugandans who need it consistently. So it is quite disappointing that Uganda which has been a success story in its response to AIDS is now undermining human rights not respecting the right to health or the right to information by only promoting abstinence-until-marriage prevention programmes.

How do you see the future in terms of Human Rights and HIV?

Personally I see a lot of opportunities in the near future because now there is recognition by international human rights groups like Human Rights Watch or UNAIDS through its Gender and Human Rights department. I see the opportunity of using these spaces to really amplify the issues of HIV and human rights. I also see opportunities for the activism of people living with HIV (PLHIV) and the networks of PLHIV who are at grassroots level. However, it is critical for those networks to be supported so they can grow strong. I also see opportunities in the other human rights groups who are now beginning to work closely with AIDS activists. Finally, there are many treaties on HIV and Human Rights that we need now to start using as guidelines more than ever instead of having those documents lie on the shelves.

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