Sandra Asiimwe was just a baby when her parents died from Aids. But 10 years later she lives, thanks, in part, to medical advances in treating HIV/Aids, and the care of her elderly grandmother Edith Nankabirwa of Byakabanda village in Rakai district.
Two years after her parents’ death, Asiimwe’s grandmother took her to an outreach clinic run by Kitovu Mobile Aids Organization, one of the pioneer HIV/Aids care organizations in the sub-region, where she tested HIV-positive and was enrolled on the Antiretroviral (ART) programme. Asiimwe’s story left many in her audience at last year’s World Aids day celebrations in Kasensero in tears.
“She shouldn’t have been born HIV-positive,” said UNAids country programme coordinator, Musa Bungudu. “This country has all the resources and the technology to save children like her from being born with the virus.”
However, Bungudu’s comments mask a dark reality in Uganda’s fight against HIV. Under a policy guideline by the ministry of Health, all pregnant mothers are supposed to be tested for HIV, with those who test HIV-positive getting introduced to PMTCT programme. This policy was supposed to ensure that no more children are born with HIV.
After first attaining 81% coverage of prevention of mother-to-child transmission (PMTCT) in 2009, the statistics have dropped drastically. Although the PMTCT programme was tested and designed in Uganda, an estimated 25,000 Ugandan babies are born HIV-positive every year. The Permanent Secretary in the ministry of Health, Dr Asuman Lukwago said that PMTCT is available at most health centre – Ivs.
But there are indications that very few women are accessing these services. A Unicef report shows that less than two-thirds of pregnant women (63%) were tested for HIV in 2010. The following year only 50% of HIV-positive pregnant women received ARV regimens for PMTCT. Lukwago says some of the women, who are not on the programme, include those who shun antenatal services.
“Many of them don’t go to established health facilities for antenatal care, and prefer [using] traditional birth attendants who can’t handle such a programme [PMTCT], but we are trying to increase their attendance of antenatal clinics so they can access the service,” Dr Lukwago told The Observer.
However, Dr Mina Nakawuka of Uganda Cares, an NGO that runs HIV programmes across the country, explains that the stigma of infection could be contributing to the problem.
“Many mothers on realizing that they are HIV-positive are scared of telling their husbands for fear that they will be thrown out of their marriages; so, they also don’t take the drugs leading to an increase in births of HIV-positive babies,” she said.
Nakawuka also cites the high turnover of health workers in health centres, most of these leaving government installations to privately-owned institutions, which contributes to a shortage in providers.
“More than half of the health workers we train in a year usually leave these health centres, so we have to keep training more,” she added.
The other problem limiting PMTCT coverage is distance from established urban areas.
“[PMTCT] is limited to urban centres, it is not reaching out to people in rural areas; that’s why we are still witnessing children who were born with the virus,” said Bungudu.
Unprotected sex and transmission of the virus from HIV-positive women to their unborn babies are the leading forms of transmission, Bungudu says. Indeed in the beginning, Asiimwe didn’t have to trek long distances to access treatment because the Kitovu Mobile Aids Organization’s outreach clinic at Byakabanda was near her home.
Unfortunately, that clinic closed after the NGO moved to other distant parts of the district, ultimately handing over its clients to Uganda Cares which has clinics at Rakai hospital and Kibaale in Kooki. Today, Asiimwe has a bigger ordeal.
“I now get my treatment from the Uganda Cares clinic at Rakai hospital [5km from her home], which is not as easy to access because I have to use a boda boda, and sometimes my grandmother fails to raise the fare,” she told The Observer.
Asiimwe needs about Shs 5,000 every month to go for treatment, money her guardian sometimes can’t afford. Ann Namande, the head of Kitovu Mobile Aids Organisation’s home care department, is aware that a lot of children like Asiimwe may be missing their treatment.
“Many HIV-positive children suffer rejection from their caregivers who at some point get tired of their constant demands or circumstances where a caregiver fails to get transport to the treatment centre.”
Experts worry that the low PMTCT coverage in the country is bound to grow into a major paediatric problem. With 25,000 new infant infections, children under the age of 15 represent 14% of all HIV/Aids patients in Uganda. Several studies suggest this will increase the HIV impact within the population over the next few years as ‘young positives’ become teenagers.
Like their mothers, very few of these children have access to ART. About 200,000 Aids patients in the country are eligible for treatment on ARVs but due to the funding shortages, not all of them are receiving this therapy. Each of the Aids patients requires about Shs 23m every year for treatment. Among children, paediatric ART coverage stood at 21% in 2011, according to UNAids, having increased from 14% in 2009.
The government currently funds only about 11% of the national HIV/Aids efforts, which according to the Aids development partners is insufficient and unsustainable. The bulk of the burden of treatment and care is left to non-governmental organisations and faith-based organizations. According to the Uganda Aids Commission, about 130,000 new infections occur every year and 25,000 of these are babies who acquire HIV from their parents.
With the number of new infections steadily rising, experts are worried that the rate of infection could outstrip access to antiretroviral enrollment by twofold. The Uganda Aids Commission projects that the country’s HIV prevalence will increase by 700,000 new infections over the next five years. This has largely left the burden of treatment and care of people living with Aids to non-governmental organizations and faith-based organizations.
With over 95% donor funding, Masaka Catholic diocese through Kitovu Mobile Aids Organization, Villa Maria Aids programme and a recently-established ART clinic at Kitovu hospital, reaches over 4,667 patients with ART and close to 6,000 patients under the pre-ART programme. At government institutions like Masaka regional referral hospital, Kalisizo hospital, Rakai hospital and other lower-level health units, Uganda Cares runs the respective Aids clinics.
Under its care, Uganda Cares has over 2,000 paediatric Aids patients, and this low intake is attributed to the parents’ fear to disclose their status.
“After testing positive, some parents get scared about testing their children because of the expected results. They try to suspend it because they don’t want their children to know, but the more the child grows, the more difficult it becomes for the parent to tell their children,” Dr Nakawuka said.
January 18, 2013 Written by Sadab Kitata Kaaya
This Observer feature is published in partnership with Panos Eastern Africa, with funding from the European Union’s Media for Democratic Governance and Accountability Project.