Apophia Agiresaasi, GPI

Community Leader Reflects on Decades of HIV Activism in Uganda


Article Highlights

Flavia Kyomukama has spent decades advocating for the rights of people living with HIV and AIDS in Uganda.  

One activist, who overcame stigma to openly declare her HIV-positive status in the 1990s, reflects on decades of advocating for the rights of people living with HIV and AIDS.

KAMPALA, UGANDA – Throughout the decades, Flavia Kyomukama, one of Uganda’s most prominent advocates for people living with HIV and AIDS, has witnessed the country’s successes and challenges in the fight against the virus and disease.

For many Ugandans, the 1980s were a period of fear, she says. During that decade, there was no public information on HIV prevention or treatment of AIDS, and there were no social support mechanisms for people living with the virus and the disease.

There were, however, many deaths.

“We lost about 1,800,000 people as a country then,” Kyomukama says. “There was fear, no hope and no information.”

But slowly, conditions improved, she says. As the decade segued into the 1990s, HIV testing services appeared as the government and civil society organizations introduced HIV- and AIDS-related care.

It was during this era – in 1994 – that Kyomukama learned she was HIV-positive, she says. At the time, she lived with her husband, but the marriage became violent after her diagnosis.

Not long after, Kyomukama left her husband and sought legal custody of her children, she says. Because she saw the link between the violence in her marriage and her HIV status, she advocated for authorities to view her case as a matter of discrimination and human rights.

She petitioned the Uganda Human Rights Commission to handle her case. But she found that the commission had never before considered people’s treatment because of their HIV or AIDS statuses to be a component of their human rights and did not have a department to support it in doing so, she says.

“The Uganda Human Rights Commission did not have a department of health at the time,” she says.

Kyomukama gained custody of her children through routine judicial procedures but wanted to expand the legal options available for others living with HIV and AIDS.

Along with friends and colleagues living with HIV and AIDS, she pressured the commission to handle the cases of people with the virus or disease, she says. In 2000, the commission opened a Vulnerable Persons’ Unit, which evolved into a full Right to Health Unit handling all complaints related to the right to health for all Ugandans.

True success came in the 2000s following new government initiatives in the fight against HIV and AIDS, Kyomukama says. For example, the number of Ugandans on antiretroviral medications increased from 450 in 1997 to 10,000 by the end of 2002 following a collaborative program by the government and the Joint United Nations Programme on HIV/AIDS and the government’s establishment of the National Committee on Access to ARV Therapy, according to a joint report by the World Health Organization and the Ugandan government.

Today in Uganda, there are more than 313,000 patients on antiretroviral medications, according to UNAIDS. As the increase in access to treatment enables people to live longer, HIV prevalence is increasing, Kyomukama says.

“If reduction in HIV/AIDS prevalence means deaths of people, I would rather we have higher prevalence with no new infections and no people dying,” Kyomukama says.

HIV prevalence rose from 6.4 percent in 2005 to 7.3 percent in 2011, according to the most recent report by the Uganda AIDS Commission, which operates under the Office of the President. New infection rates also increased from 124,000 cases in 2009 to 145,000 cases in 2011, the most recent year for which data is available. The commission predicted that new infections would rise by 780,000 from 2011 to 2015 if they continued occurring at the same rate.

But in addition to citing more access to treatment, Kyomukama also attributes the rising HIV rates to weaker preventative efforts. There is less public communication about HIV than in the past, so people are not being careful about prevention, such as having sex without protection, she says.

The government’s current response to HIV and AIDS contrasts with its enthusiasm during the early 1990s, when the leadership began a public campaign against HIV and AIDS and called on other governments to help Uganda, Kyomukama says. Leaders are lobbying for funding but not sensitizing the community about HIV as they did in the past.

“Leaders are quiet,” she says. “In the ’90s and 2000s, there was little money allocated to HIV, but there is more money now, and the response is not as effective.”

Kyomukama aims to fill the gap. Her activism has shaped Uganda’s policy toward HIV and AIDS as Parliament develops new legislation.

Following her success with the Uganda Human Rights Commission, she helped to launch in 2003 the National Forum of PHA Networks in Uganda, she says. The advocacy organization unites people living with HIV and AIDS in the country to petition the government to meet their needs.

“We started NAFOPHANU in 2003 to ensure we have a voice to put pressure on government,” Kyomukama says. “Now, it has branches in almost every district.”

Kyomukama’s work has contributed to an environment that empowers HIV-positive people to connect with and to help each other, says Rose Semujju, a food vendor in Kampala who is living with HIV.

“We are now free to declare our status, have meetings,” Semujju says. “We have started some groups as people living with HIV. We meet regularly, encourage one another and visit those not feeling well.”

Kyomukama’s charisma has enabled her to positively represent people living with HIV and AIDS, Semujju says.

“She is a bright woman,” Semujju says. “She speaks well. That is why she has managed to talk for us who are HIV-positive, and people listen to her.”

Kyomukama became chairwoman of the Network of People Living with HIV/AIDS in East Africa in 2010. But she has been involved in the organization since 2008, when she began campaigning against specific clauses in Uganda’s HIV and AIDS Prevention and Control Bill, 2008, which Parliament’s committee on HIV and AIDS is currently reviewing.

Kyomukama objected to a clause in the bill criminalizing intentional transmission of HIV. The clause would discourage people from undergoing testing, she says, as people would prefer to remain ignorant of their statuses rather than risk prosecution for knowingly transmitting the virus.

Kyomukama was an important voice in the conversation about criminalization of HIV transmission during the drafting of the bill in 2008, says Kayagi Sarah Netalisire, the new chairwoman of the Parliamentary Standing Committee on HIV/AIDS.

“Ms. Flavia Kyomukama was among the vocal civil society organization representatives who spoke against criminalization of HIV transmission when we were drafting the HIV/AIDS bill,” Netalisire says.

Criminalizing HIV transmission would deter people from testing, Semujju agrees. But she is confident that Kyomukama’s advocacy will help to remove the criminal clauses and to achieve other victories for people living with HIV.

“Her advocacy will also help make available ARVs to all those who need them,” she says.

While Parliament deliberates, Kyomukama is hopeful for a victory similar to the passage of the East African Community HIV and AIDS Prevention and Management Bill, 2012, she says. The East African Community is a regional intergovernmental organization that includes Uganda, and the bill was significant because it did not contain clauses criminalizing transmission.

The community is happy with the legislation, and it seems to be on its way to another victory in Uganda’s Parliament with the national bill, Kyomukama says.

Parliamentarians expect to vote on the bill before their term expires in 2016.

“We hope that the HIV and AIDS Prevention and Control Bill will be passed into law during this session, at least by January next year,” says Jeremiah Twa Twa, the outgoing chairman of the Parliamentary Standing Committee on HIV/AIDS.

The bill should be able to compel government to scale up services for HIV testing and to ensure access to treatment for all those who are eligible, Kyomukama says. It should also be able to protect the health rights of all Ugandans – regardless of their HIV statuses.

But there is still much work to be done to eradicate the disease, Kyomukama says. Increasing investment in education and creating job opportunities will go a long way in reducing new infections.

“When people are destitute, you can’t control HIV,” she says. “Children are dropping out of school. Others are married off early.”

In addition, the government must curb the rates of transmission in high-risk groups, she says. She promotes the rights of the homosexual community as a member of the Uganda AIDS Commission’s committee for minority groups and urges the government to allocate resources to this community and others.

“There is need to look at sources of new infection, which are fishing communities, sex workers and gay people,” she says.

As Uganda carries on its fight against HIV and AIDS, Kyomukama continues to inspire people to open up about their statuses and to seek medical care and social support, says Medius Akankwasa, a cab driver in Kampala living with HIV.

“Many of us were in hiding,” she says. “But when some people came out, like Flavia, we were encouraged, and we came out. And now we are accessing ARVs and other forms of support.”