I saw the young mother of a beautiful 28-month-old girl, who looks to be no more than 12 or 18 months. Her CD4 count is still relatively high (29% of expected for her age), and with that news the mother shouted for joy, "Yesss, I am doing a good job!" The problem is that the child needs to be started on antiretroviral treatment, because though she has survived this long with only treating infections such as TB and pneumonias as they arise, the sooner ART is started in children, the longer death can be delayed. Although the mother herself is HIV-positive, she is well enough to not have started treatment yet either. At the doctor's pronouncement that it was time to start her baby on ART, the mother shook her head and burst into tears. She does not want her to start treatment, because she feels her daughter is developing well without it. She is afraid because she believes the medications are poisonous for children, and says she has seen their effects with her own eyes in neighbors' children. After a bit of ineffectual back-and-forth, the doctor finally refers her to the on-site counselor who has the time to discuss all the issues with parents. It is hard to sit by and watch, because my instinct was to shake the mother to her senses and yell, "Yes, there are side effects, but the alternative is a slow, agonizing, and inevitable death for your baby." Instead I just handed her a Kleenex and patted her on the back.
There are many parents at the clinic who deny they have HIV, even if all their children have been born positive. They refuse testing or lie about having been tested in the past. Even if they take very good care of their children and stay on top of all the medications, they believe their child acquired the virus through some other means, like at the hospital or from an unknown episode of rape or sexual abuse. Although sexual assault and abuse is a frequent mode of transmission for many children, including several of the children at Sparrow, the vast majority of these cases are vertical transmission - the virus passing from an HIV-positive woman, who may or may not know her status, to her baby in utero, during birth, or while breastfeeding. Breastfeeding itself is an incredibly controversial issue, since the virus is known to be passed this way. Formula feeding in theory should prevent these cases, but formula is expensive and often inaccessible, as well as culturally unacceptable to many people. Even if the mother is willing to exclusively bottle-feed her baby, she often must breastfeed in front of her husband or mother-in-law to avoid being beaten or kicked out. And it turns out that the worst combination for infants, in terms of risk of acquiring HIV, is mixed formula and breastmilk feeding. (One theory is that early food or formula causes damage to the infant GI tract, allowing easier entry for the virus whenever the baby receives milk from the mother.)
The South African government, specifically the current president, the health minister, and ANC president Jacob Zuma, have notorious reputations among the local and international health communities for their stances on HIV and AIDS treatment and prevention. Zuma, leading contender for the next presidency, for example, has been quoted as advising women who have been raped to take a shower afterwards in order to prevent HIV. Embattled Health Minister Manto Tshabalala-Msimang routinely advises natural foods such as garlic and lemons to prevent the development of AIDS. And Thabo Mbeki, the outgoing president, has stated that HIV is not the direct cause of AIDS. His beliefs led to the delay of the roll-out of publicly available ART for years, finally made officially available in 2004, too late for many children and adults in this country. Such attitudes are incredibly frustrating for physicians here, because many people who may not have other sources of information incorporate these stances into their belief systems, and go against the advice of their own physician or pediatrician.
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