East African Business Week (Kampala)

Uganda: The Fatal Disconnect

Ben Moses Ilakut

30 August 2008


analysis

When Ms Grace Dumba, 41, then just a new candidate on anti retroviral drugs (ARVs) was discovered to be suffering from Kaposi sarcoma of the stomach after a biopsy and referred to the cancer institute for chemotherapy, she got the worst scare of her life. She did not feel that extreme even earlier on, when she discovered that she was HIV positive.

"I feared cancer more than AIDS. I knew it was more difficult to treat and was damn expensive. I knew I could not afford to treat it so I requested the doctors that I forfeit my ARVs to another patient because I considered myself a dead person. Giving me the ARVs would be a waste of such an acutely scarce resource at the time," Dumba remarks.

Professor Allan, one of the founders of the Infectious Diseases Institute (IDI), a centre for infectious diseases' research in Kampala, over heard her say this and was hit by her apparent resignation to fate.

"No no Grace, do not give up," he implored her. "You know what; we are going to share the cost. I will contribute half the cost of your treatment."

Her health complications started way back during her first pregnancy in 1996. She had developed severe malaria and the baby had to be induced at 7 months.

Then she got a wound on her breast which doctors at the time thought could have been a breast feeding irritation.

Dumba did not know that she was HIV positive and that feeding her baby on a teat with a wound subjected it to the risk of infection. So each time she wanted to breast feed, she cleaned up the wound and gave the baby the breast.

The wound healed after some time but re-emerged when she got her second child, so she repeated the same risky procedure.

When her second child clocked two years in 2001, she got a skin rush and it worsened towards 2002. She decided to go for STDs/HIV test and was found HIV positive.

When she discovered IDI and in 2003, she was among the beneficiaries selected for a study that involved patients undergoing anti retroviral therapy (ART).

Dumba did not have problems accessing antiretroviral therapy (ART) that much; her problem was that she developed opportunistic infections and other complications one after the other.

The most distressing one occurred in June that year when she was already on ARVs.

"Initially it involved pain in the stomach, vomiting and loss of energy. An examination called endoscopy was carried out and a biopsy of the stomach revealed that she had a cancer," she remembers.

She spent the last Ushs100, 000 (US$58) she had to cover the cost of determining the condition of her liver.

For a person who had no source of income, the bills included eight doses of chemotherapy, each at a cost of about Ushs57, 000 (US$33.5). The only free dose came as a 2003 Christmas gift to all cancer patients by the Cancer Institute at Mulago.

Fortunately, although Professor Allan had promised to cover only half the cost, he covered the entire bill.

In 2006, the next infection hit. This time it was pulmonary tuberculosis. She had to go into TB treatment for eight months. Thanks to the Global Fund for Aids Malaria and Tuberculosis (GFATM), she would have had to bear the cost of treating TB.

In 2007 she developed heavy bleeding and a discharge in her private parts accompanied with wounds. After examination, she was found to have cancer of the cervix.

She was put on radio therapy for six weeks. She needed Ushs 300,000 (about US$176) for the bills. This exhausted her energies having to worry what the next ailment would be.

"My major causes of trauma even today are the opportunistic infections. In fact I admire PLWAs who never get complications," she says.

Dumba is just one among many cases of patients who go through the trauma of opportunistic infections and complications when their CD4 count has deteriorated.

Unfortunately, although lots of money has been channelled to tackle the HIV/AIDS pandemic; most donors insist that AIDS money is used only for AIDS.

Despite overwhelming demand and requests that some AIDS resources be used to address the most common complications that PLWAs suffer, donors have remained adamant.

This and other health policy differences with receiving governments has created a disconnect in planning the intervention and has slowed down progress.

According to Dr Samson Kibende, the deputy managing director Joint Clinical Research Centre (JCRC) one of the leading centres for clinical HIV research in Africa, "the uneven relationship between donors and recipients is not unique to health. It is like any other aid based relationship which is pregnant with conditionalities that do not necessarily favour the recipient country."

One example quoted by Dr Kibende and many other public health officials in Uganda was the introduction of PEPFAR to the country.

"During the first days there was an express conditionality that the money would not be used for buying drugs for opportunistic infections," he observes. "But that beat the logic because PLWAs critically needed to be treated for opportunistic infections. In any case, it is such infections that have the potential to kill."

Drug procurement

The issue of drugs procurement has for years been a thorny one around which major disagreements emerge. Uganda for example recently commissioned a plant that will manufacture full triple therapy combination of antiretroviral (ARV) drugs, the first of its kind in Africa.

The factory will also produce the first-line anti-malarial combination Lumartem, containing artemisinin and lumefantrin. The two drugs are considered the equals of Coartem, which is Uganda's current first-line anti-malarialtreatment.

Since India ratified the TRIPS agreement and will soon cease to be a source of generic drugs for Africa, Uganda sees this as an opportunity to stem the shortage that would arise.

And according to the managing director of the company, Quality Chemicals Ltd, Mr Emmanuel Katongole, the cost will be much cheaper because there will be no export costs, besides the new factory will make Coartem and Lumartem, both containing artemisinin and lumefantrin, at $2.4 per dose. Coartem of that equivalence is produced at a cost of $12 per dose.

With this logistical advantage, it is hoped that African countries will find Uganda the correct destination for drug procurement starting January 2008.

Statistics from the Uganda Aids Commission suggest that the number of people living with HIV/AIDS will increase from 1.1 million in 2006 to 1.3 million in 2012 and 1.7 million in 2020. The number in need of Anti Retroviral Therapy (ART) is expected to increase from 129,000 in 2007 to 238,000 by 2012.

But donors are not as excited as the nationals are, about the ARVs factory and have long slapped a ban on using aid for HIV/AIDS to procure drugs from such facilities. That is why during this year's HIV implementers meeting in Kampala, Uganda's President Yoweri Museveni took a swipe at them. "I don't like it [gagging HIV money]. If you allow us to spend some of the AIDS money, we will boost our capacity, we will create employment and the benefits will be far bigger," Museveni told the donors.

This has been echoed by Uganda's health state minister Emmanuel Otaala. He says the country plans to make the benefits much bigger by locally extracting active ingredients for the manufacture of drugs.

Already artemisia, the crop from which the active ingredients for making artemisinin are hoped to be extracted in future, is being grown in Kabale district in western Uganda.

Malaria, the number-one killer in Uganda claiming 320 lives daily and Tuberculosis have been identified nationally, as diseases that must be brought under control in the fight against AIDS.

However, according to Dr Kibende, for long donors would not give Uganda money for malaria control using DDT until recently. Two years ago malaria, according to WHO cost Uganda $700million. This induced the impression that donors were aiding their pharmaceuticals to profiteer from the situation.

Consultation, consultation

Health officials in Uganda say as long as donors do not consult the recipient governments on how to implement interventions, the benefits will be minimal.

"Donors must understand that we are a government running the affairs of Uganda on behalf of the people. They should understand our priorities and involve us in planning and policy formulation," says Otaala.

The most quoted example of the backfire of rocky relations between donors and the government is the Global Fund for AIDS, Tuberculosis and Malaria.

The Global Fund in August 2005 suspended five grants to Uganda worth $367 million after an audit found evidence of mismanagement by the Project Management Unit (PMU), which was established to implement the grants.

A commission of Inquiry into the mismanagement of funds later noted that the problems for the fund started when the Global Fund Secretariat at Geneva insisted on establishing the PMU as a parallel organ to manage the fund's resources.

The government objected to this format and wanted the money channelled through budget support (through government supply chain) so that it would benefit from customary accountability checks. Well, under the GF imposed PMU, the fund suffered unprecedented mismanagement, corruption and had to be suspended.

"Parallel aid arrangements that do not inject to the national pool disrupt the smooth flow of activities and create duplication of services," says Otaala.

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