The following is an interview with Jeanne Gapiya, founding president of the Association Nationale de Soutien aux Séropositifs et aux Malades du SIDA (National Association for the Support of People Living with HIV/AIDS), or ANSS, in Burundi. Gapiya gave the opening address at the United Nations’ hearing for members of civil society in April in anticipation of the United Nations high-level meeting on AIDS, which takes place in June in New York City. In 1994, Gapiya was the first person in Burundi to publicly disclose her HIV-positive status, after which she established the ANSS.
You have been living with HIV for many years. How did you happen to get tested and what was it like accessing care and treatment? How have issues related to AIDS stigma and access to treatment changed in Burundi since you were diagnosed?
It was back in 1987 when my son had been sick… Back then there were no antiretroviral (ARV) medications and being HIV positive was a guaranteed death. Now with the ARV treatments, there have been a lot of improvements, although the stigma is still present. Today, people are willing to get tested given that they have hope to get on ARV treatment. Additionally, people are not as discriminated against as before, since the physical aspect has greatly improved for those who are fortunate enough to be on treatment.
How did you get involved in ANSS and what does your organization do in Burundi? What is your role?
The ANSS began after I spoke out publicly in a church to denounce a priest who said that people living with HIV/AIDS (PLWA) were living a divine punishment. Since then, I began gathering small groups of people and everyone gave their own testimony and began defending their own human rights. It was the beginning of such activities that later created the ANSS. The ANSS became the first center that took on full responsibility of the PLWA in Burundi with a following of more than 8,000 people.
My role consists of mobilizing funds for PLWA in Burundi and pleading for human rights at the national and international level for people who are highly discriminated against (PLWA, men who have sex with men, orphans, etc.), particularly pleading for their right to care and treatment. My other role consists of constantly reminding the political leaders and decision makers of their roles and responsibilities.
Is tuberculosis a major problem in Burundi? Among people with HIV? Are there efforts to ensure that people with HIV are screened for tuberculosis and receive TB preventive therapy or TB treatment?
Just like anywhere in Africa, tuberculosis is the leading cause of death for PLWA. Some efforts have been made with the Global Fund to Fight AIDS, TB and Malaria, but there is still a great need. The preventive and curative treatments are available but the biggest issue that remains is diagnosing the resistant cases of TB, especially those that you find among the people who are co-infected with HIV and TB.
What do you think the highest priorities should be in the area of HIV prevention in your country?
As you may know, studies have shown that when people who are infected are well-treated, they are not detectable and their contamination rate is almost nothing. I believe that this is the solution to the problem: to treat all the people who are infected with HIV and strongly encourage voluntary testing.
It is quite an honor to be asked to speak at the United Nations. What was the most important point you were trying to make in your speech at the Civil Society Hearing last week?
It was of course an honor for me, an honor for my country, but most importantly an honor for the civil society to have this opportunity and express ourselves and what we live everyday as the front-liners.
The most important point was to challenge the decision makers to be continuously engaged and involved in order to help save the remaining two-thirds of people who are still waiting for treatments.
During your speech you mentioned a tax on currency exchange that could generate $200 to $300 billion a year. Can you tell me more about that?
I was referring to a 0.05 percent tax that could be applied against all financial transactions and it may seem insignificant but it can potentially generate between $200- $300 million which can help several sectors in poor countries.
You also mentioned in your speech that civil society has the duty of reminding governments and other partners of their commitments to combating the AIDS pandemic. What can civil society do to hold governments and other actors accountable to their pledges?
The civil society must always be vigilant so that all decisions that the governments take on must be followed through and put in practice. The civil society should always be ready to denounce and speak up whenever there is any wrong doing.