Posted on 15 November 2008

By Moses Sserwanga, Kampala

Uganda has been widely praised by the international community for its openness and effectiveness in the fight against HIV and AIDS. Antiretroviral drugs (ARVs) – the main treatment, which can stop people from becoming ill for many years – are given free to between 80,000 and 100,000 people. But that leaves at least another 100,000 HIV-positive Ugandans who do not have access to the life-saving medicines.

Firstly, many do not even know they have become infected.

“Some people with disabilities cannot get ARVs because of lack of information,” Francis Kinubi, chairperson of the National Union of Disabled Persons of Uganda, told a meeting of the Africa Campaign on Disability and HIV/AIDS in Kampala recently.

"We don't have information about ARVs provided in braille form for the blind,” he said. “We want HIV and AIDS services in terms of testing, ARVs, counselling and treatment.”

And despite numerous educational and information campaigns, stigma remains a problem. Some people are afraid to take HIV tests and register for medicine for fear that they will be shunned by their communities and work colleagues for immorality and accused of spreading the disease.

Others want to take the test, but are deterred by the cost and time of travelling to a test centre.

“It’s not easy, because you have to undergo a number of tests and counselling before you qualify for ARVs,” says Gladys Bambola, a 44-year-old widow, whose husband died of AIDS in 1994 and who herself is HIV-positive. Bambola points out that a 15 kilometre journey by matatu (shared taxi) to a
clinic will cost about 2,000 Uganda shillings ($2.0) – a sum equivalent to a rural family’s food and basic essentials, such as salt and soap, for a week.

“The testing itself is expensive,” she says. It can cost Sh23,000, a month’s earnings for some poor villagers.

The expense continues when you have to get to a clinic to collect your medicines. Madina Kayonga complains about the difficulty of making the 30 kilometre journey from home to clinic. “Apart from the long distances, the transport costs make it increasingly difficult for me, and other patients, to
reach the health centre.” The round trip by matatu costs Sh5,000 – equivalent to the cost of a week’s food.

Testing and qualifying for free ARVs may not be enough. As in most developing countries, Uganda’s health infrastructure is weak and disorganised. It is short of health workers and lacks storage facilities,
laboratories, equipment, medicines and efficient data management.

“We can talk about the numbers and sites where ARVs are provided,” says Beatrice Ware, an HIV-positive activist, “but as long as these centres don’t have enough storage facilities for the drugs or laboratories to carry out tests and there are no health workers to administer the drugs, we cannot achieve much.”

Sometimes mismanagement keeps drugs on the shelves so long that their use-by date expires; sometimes poor record-keeping means that too few drugs are ordered. When this occurs, patients cannot get the drugs when they need them, confirms Andrew Luyombo of the Uganda National Health
Consumers Organisation.

"In one rural health centre we realised that orders were falling behind demand,” he recalls. “So we talked to the district health officer to involve the community in the planning process so that they got all the drugs they need. Now we have talked to officers in other districts too.”

Shortages are more common in rural areas, where it is harder for the government to organise regular deliveries.

Asaph Byamukama, the Uganda finance and grants manager of the International HIV/AIDS Alliance, says the Alliance is helping expand the role of networks of people living with HIV by training network members. It has agreed with the Ministry of Health that some drugs will be distributed through
patient groups in order to reach as many patients as possible and reduce transport costs. The Alliance, which is funded by the US Agency for International Development, is donating bicycles and motorbikes to make drug distribution easier.

But there’s another bottleneck – one that’s harder to deal with: corruption. Some ARVs are sold on the black market or diverted to private clinics. A healthworker who preferred to remain anonymous for fear of dismissal admitted that “at the district level we have a big problem because procuring the drugs takes forever and, at times, when they come they don’t reach the people waiting for them.”

Health activist Byamukama says the government is struggling to deliver ARVs to people throughout the country, and undoubtedly much has been achieved. Nevertheless, poverty, travel difficulties, maladministration and a host of other barriers show how hard it is to ensure that patients can access the drugs that will extend their lives.

Categories: Availability, Prices, Quality, Uganda

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