For additional interviews with AIDS activists and people living with HIV, as well as a 30-minute radio program produced by Human Rights Watch for the International AIDS Conference, click here:

Human Rights Watch recorded the personal stories of leading HIV/AIDS activists from around the world. We wanted to know what inspires them to do the work they do, and how the epidemic particularly affects their communities. Here, you’ll hear about when these changemakers first heard the word “AIDS,” and what they’d like to see at the 16th Annual International AIDS Conference in Toronto. Twenty-five years into the start of the epidemic, what’s the future of fight against AIDS?

This is what they said:
Were

Joseph Amon, United States
Human Rights Watch

  Commentary on the 16th Annual International AIDS Conference (2:26)
Joseph Amon is Director of Human Rights Watch’s HIV/AIDS program.

“The most important thing that needs to happen in the AIDS epidemic is… to adopt policies that are science based and that are rights based, and that the current trend of ideological and moralistic approaches are abandoned."
Falobi

Omololu Falobi, Nigeria
Journalists Against AIDS (JAAIDS)
website

Human Rights Watch mourns the unexpected death of Omololu Falobi. He was killed the evening of Thursday, October 5th having just spoken to young entrepreneurs on the importance of social responsibility. He is survived by his wife and two young children. Ron MacInnis of Internews said of Falobi, “His legacy speaks for itself...but his departure from us leaves a great void."

We thank Falobi for his dedication and hard work.

audio  Personal Story (5:26)    Download               Commentary (4:46)  Download
Omololu Falobi is Executive Director of the non-governmental organization Journalists Against AIDS in Lagos, Nigeria. He believes that media coverage about HIV/AIDS is essential in the developing an effective response to the AIDS epidemic.

“We’d like to see evidence that the world is not discriminating against Africa by ensuring that when there are new treatments, that they are made available to Africans promptly.”
Were

Beatrice Were, Uganda
National Community of Women Living With AIDS (NACWOLA)

audio  Personal Story (3:28)    Download         Commentary (2:51)   Download  
Beatrice Were co-founded NACWOLA after she came out publically with her HIV status. Despite experiencing discrimination and stigma, she has remained active in fighting for the rights of those with HIV/AIDS.

“My hope coming from Uganda, coming from Africa, being a mother living with HIV, is that we can realize universal access to treatment; that we can come out of this conference with that goal, and to see less of the rhetoric that has happened over the last few years.”
Gangte

Loon Gangte, India
President of Dehli Network of Positive People

audio  Personal Story (5:53)    Download         Commentary (1:49)   Download  
Loon Gangte found out he was HIV positive while he was in drug rehabilitation in 1997. Within months, he started speaking out about his status. Now he is the President of Dehli Network of Positive People, and the Coordinator of the Collaborative Fund for South Asia.

“For me, HIV is saving my life. Had I not knew my status in 1997, I might still continue to use drugs and died by now…Life is the most important. [My work is] not about treatment, it’s not about activism or fighting with the government. It’s about saving people’s lives.”
heath

Father JP Heath, South Africa
African Network of Religious Leaders Living with AIDS (ANARELA)

audio  Personal Story (7:19)    Download            Commentary (4:07)  Download  
Father JP Heath is the General Secretary of ANARELA, helping to found the organization after learning he was HIV positive. He travels throughout Africa to speak out against stigmatization and to provide support for other positive religious leaders.

“There is no way in which the world can approach this without the full integration of, on the one side, people living with HIV and other side the faith community.”
Odetoyinbo

Rolake Odetoyinbo, Nigeria.
Positive Action for Treatment Access, (PATA)
website

audio  Personal Story (4:45)    Download           Commentary (2:48)  Download
Rolake Odetoyinbo says she founded PATA because she was tired of living in silence after discovering her HIV status in 1998. Shortly after she attended her first International AIDS conference, she started making national television and print media appearances.

“The first conference I attended, Barcelona, is what jumpstarted me into disclosing my status. It was the first time I came into contact with concepts like “positive and not ashamed.” For me it was totally empowering. Did I learn anything from those scientific workshops? I didn’t learn one thing, and that’s the truth.”
Klepikov

Andriy Klepikov, Ukraine
AIDS Alliance, Ukraine
website

audio  Personal Story (4:50)    Download             Commentary (1:55)  Download
Andriy Klepikov is Executive Director of AIDS Alliance in Ukraine. Ukraine has one of the fastest growing AIDS prevalence rate in Eastern Europe and Central Asia.

“This conference will give a learning opportunity to almost every country to find a way how to fuel, technically, universal access. What to do, what new things, what innovations to apply, to implement…so it’s a really great sharing opportunity.”
Clear

Allan Clear, United States.
Harm Reduction Coalition (HRC)
website

audio  Personal Story (5:48)    Download               Commentary (2:26)  Download
Allan Clear is Executive Director of the Harm Reduction Coalition, a national organization committed to reducing drug-related harm.

“Media is another thing that should come out of this conference. AIDS is on the back burner in the United States. When we talk about AIDS in the US, we talk about Africa, and every so often in Asia. The epidemic that is taking place in Central and Eastern Europe is pretty much ignored…I’d like to see some kind of impetus come out of the conference that will stimulate more action.”
 

Grace Sediou, Botswana
Bomme-Ifago Association, International Community of Women Living with HIV/AIDS (ICW)

audio  Personal Story (5:26)    Download                 Commentary (2:39)  Download
Grace Sediou found out she was HIV positive in 2002. She joined the Botswana Network of People living with HIV and AIDS, then formed her own organization, Bomme-Ifago to serve the specific needs of positive women. The group works with Parliamentarians to advocate better access to health care for women.

“Scientists need experience with people who are living with the virus to tell them what is happening in their body - that’s when they can make vaccines depending on what is happening with us.”
Yanhai

Wan Yanhai, China.
AIZHI (AIDS) Action Project
website

  Listen (1:29)
Dr. Wan Yanhai is founder and coordinator of the AIZHI Action Project in Beijing. Despite government hostility, including detention, Dr. Yanhai continues to speak out for the rights of marginalized groups living with HIV.

“I hope that the international AIDS conference will become an opportunity for every government to make a commitment to the world, to people. But not a place for people to make political shows.”
Stegling

Christine Stegling, Botswana
Botswana Network on Ethics, Law and HIV/AIDS (BONELA)
website

  Listen (4:04)
Christine Stegling moved to Botswana from Germany in the early 1990s. Her organization, BONELA, works on issues such as HIV/AIDS and employment, rights for pregnant women with HIV, and confidentiality for positive people. It has a legal aid clinic and a media program

“They think Human Rights is something you discuss on the periphery for good measure, but it is at the very core of what all of us do…Developing a vaccine is not the magic bullet.”
Jacobson

Jodi Jacobson, United States.
Center for Health and Gender Equity (CHANGE)
website

  Listen (2:19)
Jodi Jacobson has a long trajectory of working for reproductive health and gender rights. CHANGE works to change US International policy to support the human rights of those living with HIV/AIDS.

“We make a mistake by saying only ‘what will come out of it with people living with HIV/AIDS,” I think we need to be thinking about this as all of us - those of us at risk and those of us living with.”
Scwalbe

Nina Schwalbe, United States
Global Alliance for TB Drug Development (TB Alliance)
website

audio  Listen (2:03)
Nina Schwalbe is Policy Director of TB Alliance, which is working to develop a tuberculosis treatment regimen compatible with the HIV regimen. Tuberculosis is the leading infectious killer of those living with HIV/AIDS globally.

"I would like to see sufficient attention to the dramatic need to address TB/HIV co-infection…It’s a ridiculous thing that AIDS patients die of TB. It’s completely unnecessary. It’s time to force these two systems to work together.”
 

Kieran Daly, Canada
International Council of AIDS Service Organizations (ICASO)
website

  Listen (3:25)
Kieran Daly is Director, Policy & Communications at ICASO, what he describes as a “network of networks.” ICASO strives to strengthen community mobilization and advocacy around HIV and AIDS. It is also one of the co-organizers of 16th Annual International AIDS conference in Toronto.

“Key issues at the moment are challenging some of the policies of the US government that many people feel are undermining the response. And if this conference can come out with key messages about what we as a broader community think is good practice, I think that would be really good. The theme of the conference is time to deliver. So, it’s time to deliver on what we know works.”
 

Susie McLean, United Kingdom
International AIDS Alliance
website

  Listen (3:56)
Susie McLean is Senior Policy Advisor at the International AIDS alliance. The alliance is an initiative of people, organizations and communities working towards a shared vision by supporting effective community responses to HIV and AIDS.

“One of the things that as a global response we are really weak at is understanding and creating and implementing interventions to address discrimination… and if the focus of the conference were a work program about a list of key interventions, about a significant injection of financing for stigma and discrimination interventions, it could be a very powerful thing.”