HIV in Uganda: The Challenges of Getting Pills to Patients

by Richard Kavuma

Kampala, Uganda - A somber aura hangs over the compound at Teresa Ntamalengero's home in central Uganda. The men are chatting in hushed voices, the women are huddled up on a bench, and the children stand quietly holding the bicycle rims they use as toys.

Inside her mud and wattle house measuring six-by-four meters, Teresa is helping her daughter Janet to sit up with the help of two neighbors. Teresa is 63. Her daughter, Janet Nakyanzi, is 28 but has lost so much weight she looks more like a child. They are both HIV-positive and they need antiretroviral drugs.

The younger woman's health has deteriorated more rapidly than her mother's. "She is very sick and we both need treatment but as you can see, I have nothing," says Teresa. Teresa attended two of the three mandatory training sessions needed to receive treatment; she did not make it to the third because she could not afford to pay for transport to reach the clinic. She had spent the afternoon trying unsuccessfully to raise the fare to take her daughter to the hospital.

Teresa's nearest facility, Bbaale County Health Centre IV, is 24 kilometers away. Kayunga District Hospital is 22 kilometers away. A return journey to either hospital costs 3,000 Ugandan shillings - more than a dollar and a half. There is a health center three kilometers away but it does not have an HIV clinic despite serving more than 50,000 residents.

Officials estimate that a million Ugandans are living with HIV, the virus that causes AIDS. Of these, an estimated 200,000 are in the advanced stages of the virus and need antiretroviral drugs (ARVs). About half of these are receiving the treatment.

Uganda's 290 sites accredited to provide free ARVs are mostly government, mission and private hospitals and county-based health centers. One challenge, however, is that many patients are like Teresa - too poor or too weak to make it to these facilities.

"If our local health center could get an AIDS clinic at least once a week, that would bring services closer to those who need them," says Yekosophat Bogere, a local counselor and HIV/AIDS activist. Bogere is chair of the 100-member Nakabango AIDS Patients Support organization (NAPSU), which he founded in 2000. He has won national recognition for fighting the stigma still surrounding HIV/AIDS and for encouraging people to take an HIV test.

Bogere's other big challenge has been the reluctance of people to begin taking drugs. Medical authorities say anyone with a CD4 cell count of 200 or less ought to start on ARVs right away. But when antiretroviral drugs funded by the World Bank first arrived at Kayunga District Hospital in 2005, they were met with skepticism. People who knew they were HIV-positive were too scared to go for the blood test to determine whether they needed the new drugs.

Bogere remembers locals saying, "Those drugs are going to kill you; once you start them, that will be the end of you." Despite this, he persuaded four members of his organization to take the CD4 test. After that, however, two of them refused to begin treatment, scared by the myths in the village. "The two who refused to take medicines died within less than one year," he says. "But the two who accepted ARVs are alive and doing very well."

Donor's Mercy

Nearly all the money used to provide free HIV drugs in Uganda comes from donor countries. According to Dr. Elizabeth Namagala, a coordinator in the antiretroviral therapy division of the ministry of health, about 75 percent of Uganda's ARV budget is supported by the U.S. Presidential Emergency Plan for AIDS Relief (PEPFAR) and the Global Fund to Fight Malaria, AIDS and Tuberculosis set up by the G8 countries in 2002. The remaining 25 percent comes from various international nongovernmental agencies (NGOs) working either directly or through local organizations.

Patients reap the benefits of medication while the donor funding is flowing but are vulnerable if it dries up. In 2006, patients felt the knock-on effects of a political scandal in 2005 which saw five grants worth $367 million over several years from the Global Fund suspended after accusations of serious mismanagement. When the grants were suspended, the government insisted that people receiving ARVs would not be affected. However, officials now admit that the suspension led to drug rationing and eventually created a shortage as the country's buffer stocks were used up.

Many analysts, appalled by the corrupt officials seen as having stolen drugs of their dying countrymen, welcomed the suspension and subsequent judicial investigation. But some also question the priorities of a government that cannot treat its critically ill citizens.

HIV and AIDS activist Rubaramira Ruranga, a retired army major, has lived with HIV for more than 20 years. "I think governments in Africa are not focused because much of their money goes into defense," he laments. "Uganda does not have a budget for HIV/AIDS," using its own resources; instead, "we are depending on the mercy of the donors."

Government health expenditures in the 2005-2006 financial year totaled 240 billion Ugandan shillings (roughly $138 million), excluding project funding by donors. Donor-supported health projects that financial year amounted to 256 billion Ugandan shillings. Together, this was 13.7 percent of the national budget, which dropped to 8.6 percent for the 2006-2007 financial year. Both these figures reveal Uganda has not met its pledge under the 2001 Abuja Declaration, an agreement among African governments, to spend 15 percent of their budgets on the health sector.

Asked about the government's plans to fund healthcare, Uganda's junior health minister Emmanuel Otaala argues that donor funding should not be treated as separate from government spending. "According to our long-term institutional arrangement, all money from donors will come as budget support and will be mixed with ours to form a basket," he says. "So you can't say that the government is not funding ART."

Otaala says he is optimistic that the treatment program is on a firm footing. The government's priority now is to get more people on to the program using a mass door-to-door campaign that encourages Ugandans to test for HIV and know their status.

Activists argue there are areas in which the rich countries must improve or push governments for improvement. Ruranga for instance feels that donors must find ways to listen to the voices of the program's end users and grassroots organizations. This argument is based on the suspicion that governments give a distorted view of the situation on the ground.

Another criticism relates to the healthcare infrastructure. Instead of supporting the better established health centers, some donors prefer to work through particular NGOs. Beatrice Were, another of Uganda's leading HIV/AIDS activists, argues that while this approach is delivering an important service to desperate Ugandans, it is simply not sustainable.

"They need to strengthen our healthcare system instead of creating a parallel structure," she says. "The donors need to continue supporting us but they also have a duty to challenge our governments to show concrete plans of how to take over in the long run."

Richard Kavuma is senior staff writer for Uganda's Weekly Observer and an award-winning journalist. This story is distributed by Panos Features