ImpActAIDS Newsletter

Caroline Adhiambo gulps down fruit juice and takes a deep breath. "These are my anti-retroviral drugs," she says. "They do not come easily; were it not for an international organisation, I would be long dead."

Life has not been easy for the mother of two since she was first diagnosed as HIV-positive in 1997. Not only did her parents and other family members disown her but she also fell out with her husband, whom she blames for her illness, and left to live with a friend.

Two years after being diagnosed, she started feeling the effects of being infected. The amount of the virus in the body increased substantially, with her CD4 count (the immune cells protecting the body) seriously compromised.

She needed anti-retroviral drugs to reverse the situation. But she could hardly afford any extras beyond what she needed to survive on a day-to-day basis. She recalls: "Being a single mother, the little money I got was channelled into buying food. It was not enough to meet this new commitment."

The people she expected to help turned judgmental, their attitude being that she deserved what she got. "Those who are expected to help usually dismiss us as prostitutes who deserve it," says Adhiambo, who believes infected males are more likely to get ready assistance from their families.

The turning point in her life came when she went down with tuberculosis. A friend introduced her to Medicines Sans Frontier (MSF), an international NGO that runs a free anti-retrovirals project. "My CD4 count was 42," says Adhiambo. "But since they put me on ARVs, it has shot up to 150."

'Against Aids in Africa', a 2003 UNAIDS publication, reports that women constitute 58 per cent of those infected with the virus in sub-Saharan Africa. Because of their poverty and lowly status in society, women are less likely to benefit from education and preventive measures and they are at the lower end of the treatment and care matrix.

Dr S.T. Patel, an HIV specialist, says infected women find themselves pushed into a difficult corner, especially when they are expectant and require comprehensive treatment.

Both mother and baby need extra care then - to guarantee that the child does not acquire the virus and ensuring that the mother does not die.

But there are yet more problems: even when on ARVs, women may fail to keep up with their treatment regime because of the many competing demands on their time. They may be out foraging for food when the time for taking a dose comes. Sometimes, they may choose to spread the dose to last double the time allotted in order to minimise costs.

* Names have been changed in this story to safeguard the privacy of the women who spoke to us.

Aids Patients Quitting Treatment
Arthur Okwemba

Aids patients on the government antiretroviral programme have started dropping out in small but worrying numbers that are said to be an indication of a bigger problem in the offing.

The dropout phenomenon is also being witnessed in mission hospitals and other private institutions that are offering antiretrovirals.

About 35 of those who have dropped out from both government and private health institutions have been lucky to be enrolled at the Medicins San Frontieres (MSF)-Belgium, which runs a free antiretroviral drugs programme at Mbagathi District Hospital in Nairobi.

Doctors now warn that if not checked, those affected will be forced to start second-line treatment or may develop HIV resistant strains, both of which may require more expensive drugs to manage them.

Most of those dropping out from the ARV programme are said to be unable to afford the Sh 500 being charged for the drugs as well as costs of laboratory tests on items such as CD4 counts, liver function test, urea and kidney.

The tests are a prerequisite for a person to be put on the drugs, and for subsequent monitoring of the individual's response to the regimen.

But the National Aids and Sexually Transmitted Diseases Control Council's (Nascop) deputy director and ARV manager, Dr Mary Wangai, says they have not recorded any dropouts so far in government hospitals where the drugs are being dispensed.

"What we think is keeping people away from joining the programme is the money required to meet costs of laboratory tests. And we are seriously looking at ways to minimize the current costs further," says Dr Ibrahim Mohammed, Nascop's director.

He adds that his agency has alerted the Director of Medical Services about the issue, and a policy on how to waive fees required for such tests maybe formulated once the matter is thoroughly considered.

Nascop is also appealing to government hospital superintendents to assess and find ways of waiving fees for those who cannot afford.

Indeed, what is happening on the ground makes the formulation of a government waiver policy on ARVs and associated tests an urgent matter. At Kenyatta National Hospital, a number of patients have dropped out from the ARV programme but the doctors at the institution refused to disclose the number.

Although the hospital gets some of its ARVs from the government, it is charging patients Sh 600 instead of the recommended Sh 500, besides other costs for laboratory tests.

It also has no waiver options for patients who cannot afford the ARVs under its waiver policy, which is open to patients with other ailments.

Doctors at the hospital said KNH, being a parastatal, is expected by the government to be self-sustaining. And it cannot achieve this if it decides to waive fees for those demanding the life-prolonging drugs.

At MSF-Belgium, Horizon found that some of the patients who had dropped out from institutions like KNH and other private ones were seeking assistance from them.

In a recent interview, Dr Delphine Sculier of MSF admitted that of the 35 patients who have enrolled in their programmes after dropping from other institutions, a number were from KNH.

"We are receiving Aids patients who have dropped out from the private institutions and from KNH, most of whom could not afford the monthly fee charged for ARVs and CD4 counts," said Dr Sculier.

Charging of user fees is expected to help health centres dispensing the drugs improve their facilities and pay salaries for their laboratory technicians.

But the fees charged - according to Global Fund to Fight Aids, Tuberculosis and Malaria - that is financing government and some NGO ARV programmes - should not hinder patients from accessing the drugs or sustaining themselves in the programmes.

The Fund says it is ready to withhold disbursement of money to countries where the dropout rates are high, and resume only when the issue has been sorted out.

In an e-mail communication to Horizon, Jon Liden, the Fund's Head of Communication warns: "If we detect that the user fees is excessive and is reducing the number of those accessing the drugs or occasioning high drop-out rates, then we would suggest or demand the scrapping or reduction of the fees before further disbursement of grant monies."

A number of HIV/Aids experts interviewed argue that the government has no clear policy on what happens to HIV patients who present at the health facilities and say they cannot afford both the drugs and the cost of tests required.

Indeed, individual hospitals like Mbagathi District Hospital have their own policy to waive charges for some patients who are unable to afford the Sh 500 for ARVs.

For now, what is worrying doctors is the fate of those who drop out and fail to access alternative programmes such as those provided by MSF.

If they are not captured in good time, the doctors warn, two things are likely to happen: these patients will have to start expensive second-line ARV treatment sooner than expected; or will develop HIV- resistant strains, which are difficult and expensive to manage.

They further argue that since the Global Fund money is provided free of charge to the government and NGOs, they should likewise give the drugs free to those who need them.

Indeed, the Fund has come out to categorically state that it does not charge any country for the medicines, and it expects countries to reciprocate to their Aids patients that way.

Says Liden: "We do not charge for the medicines, and the general expectation is that countries should not charge patients either."

But Liden is fast to add: "If countries have a system of modest user-fees in place and they argue that they would want to retain those, we accept that argument."

The only worry the Fund has is if these charges occasion dropout or cause a decline in the number of people who can access treatment.

When incidences such as high dropout rates are detected, then, says the Fund, it would be an indication the user fee charges are excessive.

And the penalty would be for the Fund to suggest or demand a scrapping or reduction of these fees, before further disbursement of grant monies.

Meanwhile, Horizon has established that KNH is not carrying out viral load tests for those on its ARV programme as required under the World Health Organization guidelines.

The test is critical in helping medics establish when to change the ARV regimen of an individual who is not responding to certain drugs, as a way of forestalling the development of HIV-resistant strains.

According to WHO, although other hospitals such as those at the district level may not have the necessary technology to carry-out the expensive viral load tests, referral hospitals should do so.

With KNH not doing so, the situation in the country is that no viral load test is being done on those on the government ARV programme.

It is understood that the hospital has approached the Kenya Medical Research Institute (Kemri) to help carry out the tests.