Veteran Ugandan activists disillusioned with direction of HIV response

From IRIN, a story about the fight against HIV in Uganda, some activists there say that they are losing ground against the disease.

Some of Uganda's most active campaigners in its 30-year fight against HIV are losing faith in the government's ability to effectively counter the epidemic as the country struggles to provide treatment and prevent more than 100,000 new infections every year.

Uganda won plaudits in the early days of the epidemic for the aggressive stance taken by President Yoweri Museveni; the country lowered its HIV prevalence from 18 percent in the early 1990s to about 6 percent in 2000. However, several setbacks - including corruption scandals, frequent treatment shortages and accusations of a misguided prevention programme - have undermined its progress.

"Uganda's HIV fight is like a stunted child who once upon a time crawled, stood up, took a few steps but was never able to run," said Milly Katana, a long-term activist and one of the inaugural board members of the Global Fund to fight HIV, Tuberculosis and Malaria. "And the way things are going, the child may go back to crawling."

More money, less passion

Katana, who discovered she was HIV-positive in 1995 and went public with her status soon after, says while the injection of millions of dollars saved lives through treatment, it also commercialized the industry, leaving it open to abuse by those not truly interested in defeating the epidemic.

"When we started we had a genuine passion for fighting HIV, but now people do it as a job, a way to earn a living, and are less interested in people living with HIV, in understanding what it will take to end the epidemic," she said.

Katana added that Museveni, who once faced HIV head-on and stood with the activists, appeared to have changed his stance, embracing prevention programmes that did not emphasize condom use and openly questioning evidence-backed prevention techniques such as medical male circumcision.

"I have lost the fire I once had for activism; we need to stop and think and look at what made us succeed in the early days," she said.

Lack of coordination

For Major Rubaramira Ruranga, executive director of the National Guidance and Empowerment Network of people living with HIV/AIDS in Uganda, the lack of proper coordination at the top of the HIV response is largely responsible for the disorganization visible in the rest of the sector.

"Who is responsible for HIV in the country? Is it the Uganda AIDS Commission? Is it the Ministry of Health? Is it the President's Office?" he asked. "We need to have a single body that is able to call people to order, to steer the response effectively; for instance, HIV is going up again in Uganda and we need to know why, but who can tell us?"

He also noted that while the country had strong policies to fight HIV, they rarely reached the implementation phase.

"The national strategic plan is full of good ideas, but where is the change? For instance, a lot has been said about mainstreaming HIV, but it has not gone beyond the rhetoric," Ruranga said. "We need to set benchmarks and have mechanisms that work towards achieving them."

He further noted that HIV decision-making had happened at a high level, leaving out grassroots communities and therefore often missing out on their needs.

"HIV became an office business with lots of workshops, largely in the capital," Ruranga said. "As a result, the needs of the most important people - young people in particular - have been mishandled, and while there is a lot of talk about HIV, there has been little effort to ensure the population understands important issues, such as HIV discordance.

"There has also been a failure to promote a healthy understanding of ARVs [antiretrovirals]. People think it's a panacea and have become complacent about their behaviour," he added. "[They] don't realize that along with ARVs come a number of other complex conditions - cardiovascular disease, lipodystrophy [a condition involving the redistribution of body fat] and so on, some of which can be debilitating."

Stagnation

Rev Gideon Byamugisha has been living with HIV since 1992, and was one of the first religious leaders to publicly announce his status; he is a founder member of the International Network of Religious Leaders Living with and Personally Affected by HIV/AIDS, which, since its formation in 2006, has attracted more than 4,000 members from 48 countries.

Byamugisha says Uganda has failed to keep up with the new methods of handling the epidemic.

"We are still talking about ABC [Abstinence, Be faithful and correct and consistent Condom use], which focuses on sex - but what about the 21 percent of new infections that occur through mother-to-child transmission?

"’Be faithful’ clearly has not worked, since marriage is where most new infections are occurring - the issue should not be faithfulness, but sex with someone whose HIV status you are aware of," he added. "Medical male circumcision is not moving as fast as it should and we have yet to make any moves on treatment as prevention.... we need to take note of the new dynamics and adopt them."

The country needed to shake off the complacency that had set in following the early successes, he said.

"Uganda is a prisoner of its own success - we are like a heavyweight boxing champ who gets the belt and then relaxes," he said.