Treatment crisis a wake-up call over lost chances in Aids war

Now that Uganda’s donors are cutting funding for Aids drugs, the authorities may have to talk more about prevention and less about treatment. It is time to recall the 1990s, reports Rodney Muhumuza:-

One of the patients at the Joint Clinical Research Centre is a well-educated man who first sought treatment for Aids in 1991, when he was a young boy, when most Ugandans were still deciding whether the disease usually called silimu was for real.

This was the year of Yoanna Nanyonga, the Masaka woman who fed Aids sufferers on soil, offering dirt as a cure for the affliction. “He was a kid then,” Dr Peter Mugyenyi, who runs the Joint Clinical Research Centre (JCRC), said of the man. “He now has a master’s degree.” This patient is one of at least 34,000 Ugandans who access anti-retroviral treatment, or ARVs, through JCRC, which started providing Aids drugs long before most Ugandans knew there was even treatment for the disease.

Changing times
By 2003, when the JCRC’s activities were becoming widely known, the institution had 72,000 patients, making it the biggest provider of ARVs in Uganda. But the times have changed, and it seems JCRC will be left behind. In excess of 100,000 Ugandans get infected with HIV every year, while only 200,000 of the 400,000 Ugandans who urgently need ARVs access them. Now, even as more Ugandans come forward to seek treatment, foreign donors, who have kept alive most of these Aids sufferers, are staring into what seems like a bottomless pit.

They are walking away, only guaranteeing that there will be money to treat those already in the system, people like Dr Mugyenyi’s success story from 1991, the physician told Sunday Monitor in a recent interview. “The money has not been forthcoming,” Dr Mugyenyi said. “A crisis is building up…. The US Presidential Emergency Plan for Aids Relief have said that all patients who are already on treatment will continue to get support. We don’t have a budget for new patients.”

Strategy questioned
This predicament, critics say, is at the heart of everything that has gone wrong with Uganda’s Aids war. It goes straight to the difficult question of whether Uganda’s Aids strategy is not about preventing new infections so much as preventing Aids sufferers from dying. “We get disappointed when a person dies of Aids,” Dr Mugyenyi said, regretting the donors’ loss of interest in funding Aids treatment.

For a long time now, it has been accepted that what used to be a success story has slowly been perverted, the beautiful examples almost forgotten, so that it is now even suspected that the prevalence rate may be much higher than the official 6 per cent or so.

If the HIV and Aids Prevention and Control Bill of 2010, which was mentioned on the floor of Parliament last week, is proof of how hard the authorities are now working to energise the war against Aids, it also underscores the desperation that accompanies this effort.

The draft legislation, which calls for mandatory testing in some cases and criminalises HIV transmission, has been ridiculed by activists who say its unorthodox approach is counterintuitive and infringes on human rights.

Circumcision has been added to the traditional ABC—abstinence, faithfulness and use of condoms—the combination that was credited with bringing down the prevalence rate from double digits in the early 1990s, but no one is pretending that the situation is under control.

Lack of interest
Few Ugandans—only about 20 per cent of people aged between 15 and 49, according to a 2009 report by the United Nations agency UNAIDS—know their HIV status. Despite the glorious talk about the openness of Ugandans about Aids, very few public officials have publicly tested for the disease in the manner prescribed by activists.

What is more, Aids as a cause of death remains a taboo subject during funerals. “No one has really come out [to say that he or she is living with Aids] after Philly Lutaaya,” social critic Timothy Kalyegira said recently, recalling the 1980s musician whose very public struggle with Aids helped launch Uganda’s claim to frankness about the pandemic. Lutaaya died in 1989.

Still standing tall
But there is one man, the retired soldier Rubaramira Ruranga, who has lived with Aids for over 20 years and now spends some of his time discussing how he does it. But he does not look as intriguing, or even as miserable, as Lutaaya, who, thin and buried behind sunglasses, created the shadow that haunted the conscience of Ugandans who knew him.

Maj. Ruranga was recently invited to a function at which prostitutes were being encouraged to bring responsibility to the business through, for example, rejecting sex without a condom. One of the prostitutes at the event said Maj. Ruranga had spoken well, even encouragingly, although she did not quite remember what he had said.

In recent times, Maj. Ruranga has become a critic of Uganda’s war on Aids, aligning himself along the increasingly popular view that “the government misused Aids money” in several ways. In an interview with Sunday Monitor, the Aids activist recalled a recent public dialogue in an Entebbe hotel where donors said “farewell” to Uganda, a reference to the end of Aids funding as it used to be.

Maj. Ruranga, like the donors, cites abuse of Aids-related money (Global Fund, for example) and what is sometimes perceived as a cynical move by the authorities to focus more on treatment and less on prevention, more on tomorrow and less on today. “People stopped responding to the problem; they were responding to the money,” Maj. Ruranga said. “The country should go back to the drawing table and use the infrastructure that is available.”