On Tuesdays, the Paediatric Ward at Mulago National Referral Hospital in Kampala is usually packed with young people from as early as 8am. Some stay glued to the big TV screen, while others catch up with friends; hugging and chatting away. To an outsider, it seems like just another hangout place for the youth. But these are not your everyday youth. They all carry a deep secret. They are all infected with HIV, the virus that causes AIDS and are here to collect their Anti-retroviral drugs. Since AIDS has no cure, these youth depend on the ARVs to suppress the HIV virus in their body.
One of the girls, Rose Namale, 15, is one of a few willing to speak to me after I introduce myself as a journalist. She says she learnt of her HIV-positive status at 13 when her guardians felt she was old enough to handle it. She had lost both her parents and now lives with her big sister.
Jackie Kemigisha, 27, is also HIV positive. She gets her drugs from the Infectious Disease Institute (IDI) section for young adults. Although she is more self-assured now, she recalls the days when it was torture to come to the ward.
"I always dreaded my visits to the clinic and would always delay my visits by three to four days which was wrong. If I was not strong I don't think I would have continued with those monthly trips," she says.
As an adolescent, she felt the stigma and was stung by the taunts from people, including medical staff, who should have known better.
Born HIV negative, Kemigisha contracted the virus when she was raped at the age of 15. She was thrown out of home by her family at 19, and left to die because of her HIV status. She says only her determination to show her parents that being HIV positive is not the end of the world has kept her going.
She was 20 when she was introduced to the world of ARVS and first experienced the side effects associated with the drugs. Her cheeks and tummy swelled so much that she looked pregnant, while her legs and arms became as thin as spindles.
Luckily, the doctors noticed her bad reaction to the initial drugs and changed her treatment. Today she reveals with a big smile how her viral load has reduced to undetectable levels.
Kemigisha and Namale are the new double face of AIDS treatment in Uganda. On the one hand, they show that it is possible to lead a normal life with HIV if one gets appropriate treatment. On the other hand, they represent the increasing cost of keeping individuals on Anti-Retroviral Treatment (ART) for life.
Rare and expensive
ARVs are still scarce in Uganda and Kemigisha and Namale are lucky to get them. Stephen Watiti, a Senior Medical Officer at the American-funded Mildmay Hospital on Entebbe road, says out of the 414 centres accredited by the Ministry of Health to provide ART only 210 are operational - and it is common for them to run out of essential drugs. He says of the estimated 1.2 million people living with HIV in Uganda more than 500,000 need ARVs, but only 200,000 are able to access them. In July some desperate patients in the districts of Mubende, Masaka, Lira, Kabale and Gulu threatened to hold demonstrations over drug shortage.
Worldwide less than 50% of people in need of treatment currently access treatment. Additionally, at least half of the people on treatment are using drugs whose greater toxicity increases the risk of serious health complications.
For example, WHO no longer recommends stavudine (d4T), yet it remains one of the most widely used nucleosides in antiretroviral combinations in poor countries.
The WHO also recommends that young children less than two years who have been exposed to maternal or infant nevirapine, which is widely used in Uganda, start antiretroviral therapy with a lopinavir/ritonavir-based regimen. But they are given nevirapine because it is cheaper. Nevapine based care costs between- US$55 - US$ 200 per year, while the Lopinavir/Ritonavir costs between US$220 and US$350 per year.
The cost of ARVs varies widely with brands, quality, and logistics but figures from the Clinton Foundation HIV/AIDS Initiative (CHAI), indicate the cost is falling. A once-daily first-line regimen including tenofovir (TDF) and efavirenz (EFV) costs about US$159 per patient, per year (Approx. Shs. 400,000 or the cost of a low-end TV set). The same regimen cost up to US$400 two years ago. Second-line drugs cost about US$ 410 per patient per year, down from US$800-$1,200 per patient, per year two years ago. At CHAI rates for the cheapest first-line treatment, Uganda needs Shs450 billion or half of the revised Shs1 trillion annual budget of the ministry of Health, to provide ARVs to all who need it per year.
A leading HIV/AIDS activist, Maj. Rubaramira Ruranga, has been living with the virus for 27 years. At the CHAI rates, approximately Shs10 million has been spent on his drugs.
The cost figures get mind-boggling if all 1.2 million patients are considered. Therefore, although a study done in Uganda and released in Rome on July 18 showed that patients taking ARVS can expect to live close to the country's normal life span of 55 years, Ruranga says to avoid the high costs of treatment, focus should be on prevention of infection in the first place.
Equally exciting was the July 14 announcement by the American Centres for Disease Control and Prevention (CDC) that results from two trials that oral antiretroviral drugs for HIV can cut the risk of heterosexually acquired HIV infection by over 60%. The studies used a once-daily dose of tenofovir/emtricitabine (Truvada) which is readily available in Uganda.
Is cure possible?
To Ruranga, the efficacy of the ARVs in preventing infection is a sign of a possibility of a cure or at least turning HIV/AIDS into just another chronic disease which requires patients to live on drugs. But Isaac Lwanga, the Principal Medical Officer at IDI, says there should be no mistake here.
"Even when one constantly takes their ARVs and the HIV virus reaches undetectable levels that the machine fails to see the virus in the body, that person remains HIV positive," he says.
Other medical personnel like Micheal Etokoi of The AIDS Support Organisation (TASO) Mulago branch dismiss talk of getting a cure for HIV/AIDS virus as "farfetched"
"It should not divert people from taking their ARVs as expected of them," says Etokoi.
World renowned HIV/AIDS researcher, Dr Peter Mugyenyi, who is Executive Director of the Joint Clinical Research Centre in Uganda, says today Ugandans access the same drugs as those taken in developed countries. "The only difference is that the ones taken here are generic and not brand drugs because generic drugs are cheaper and more affordable," he adds.
But he cautions that the drugs are not a cure. He says the moment one stops taking ARVs; the virus goes back to the blood immediately.
However, the Treatment Action Group (TAG), a US-based HIV/AIDS activist organisation which produces ÂÂan annual "Tagpipeline" report on diagnostics and preventive technologies in development in the pipeline for HIV, Hepatitis, and TB, notes in its 2011 report that, "the sobering financial challenge of maintaining lifelong treatment for millions of people globally" has over the last two years caused "a tangible policy shift towards finding a cure for HIV".
It says interest in finding a cure picked up following the widely reported case of Timothy Brown, who has remained off antiretroviral therapy and free of detectable HIV for four years and counting after a complex series of high-risk treatments for cancer, including a bone mallow transplant. His case is viewed as a compelling proof that a cure for chronic HIV infection is possible.
The TAG report reveals that the prospects for dramatic or revolutionary changes in prevention and treatment for HIV in the next decade is "amazingly good".
It notes, however, that: "politically and economically, the world's activists and political leaders face a crisis in which the former must persuade the latter to redirect billions of dollars from unproductive wars into life-saving health research and access programmes, at home and internationally to save over 34 million people who have the HIV infection."
In the report, Jonathan Berger explains that for most people in developing countries, access to new drugs is hostage to a number of non-medical factors, particularly those related to intellectual property. He cites barriers such as slow drug registration processes, licensing policies, inefficient domestic procurement policies, and problematic supply chain management practices.
Mugyenyi says the entire International Community of donors and the government of Uganda needs to realise that there is a unique opportunity to find a cure and there should be increased funding to the cause.
"A cure would be great news for the children who have had to take drugs for most of their life," says Sabrina Bakeera Kitaka, a Paediatrician at Mulago Hospital, "it would be great to see all these young lives saved." For now however, their only hope is ARV drugs.