Tessa10: Patient cases and more WFP stuff

Okay, so about last Friday’s meeting…

The woman being discussed was in her late teens or early twenties. I can’t remember her exact age. She and her baby both have HIV. It took forever to put the woman on ARVs because the clinic staff  (doctors, social worker, pharmacy, etc.) are hesitant to start someone who is in an unstable situation. This is because it is extremely important to take ARVs correctly. This can be very complicated because some pills have to be taken on a full stomach; others on an empty stomach; some can’t be taken with other meds; some should be taken with others…and so on. Some patients may have 3 or 4 or more pills to be taken under specific circumstances. Things are further complicated when the patient can’t read (or simply chooses not to read the directions). Anyway, this woman finally was started on ARVs because of her desperate need. The first few months, she had terrible adherence. Once, she said she had misunderstood the verbal directions and hadn’t read the written directions. Other times, she simply didn’t know why she had so many extra pills left over. Then the social worker gave a little background on the woman (I’ll call her Sara). Her parents were dead, and she has one brother who she doesn’t get along with. She lives with him and his wife, who also dislikes the Sara. When she was young, kids at school would call her an alcoholic and other names because her grandmother ran a liquor business. They beat her as well. When Sara reported this to her mother (then alive), her mom replied, “Well, just don’t go to school.” So her education was ended prematurely.

Currently, she has no work—no source of income, what-so-ever. The father of the baby lives in
Johannesburg and refuses to help. His one suggestion to her was to leave the baby “with his people” and they would keep and care for the baby. Clearly, the mom isn’t going to abandon the baby with people who could care less abut it. The question posed by the social worker on Friday was whether to start the baby on ARVs or not. If the baby didn’t receive them, his health would quickly deteriorate and he would die. But if they give the medicine to the mother, and she doesn’t dispense it properly, then the baby will build up resistance to the first line drugs, and for the rest of his life, he would be extremely difficult to treat (because the usual drugs would be ineffective). Another suggestion was that the mother actually wanted the baby to die (while this isn’t common, there have been situations like this encountered before). At that point, someone suggested they call
Swaziland’s equivalent of social services (I’m not sure what it was called exactly). But another person pointed out that they never have shown up all the previous times they had been called. In fact, recently there had been a suspected case of sexual abuse of one of the children at the clinic. COE staff called multiple times, yet no one ever checked into the situation.

At the end of the meeting, the general consensus was to give them the ARVs regardless of the social situation. Many people at the clinic felt that, whether or not the mother cared for the baby, it was the clinic’s duty not to abandon it. What is in the COE’s control is whether or not the baby has the opportunity to receive the drugs. At this point, the social worker mentioned that the mother had actually said she was not ready to give ARVs to her baby. The reason was unclear, although Sara’s doctor suspects it’s because Sara knows how complicated a baby’s ARV regimen can be (since it involves liquids, not pills). At that point, the discussion was ended with the vague conclusion that the social worker would have to talk more with the mother.

The second case discussed was equally interesting. A baby who lived in a very stable situation had been started on ARVs a while back. The family had an income, and the uncle of the baby was an HIV/AIDS activist who travels around the country educating people about the illness. Thus, the mother of the child was very aware of the danger of non-adherence. Anyway, the child’s doctor recently took him off of the ARVs because adherence was terrible. The mother could not explain why. She once said that she can be forgetful, but that she knows she didn’t forget… unless she forgot that she forgot. After telling the social worker this, she was given one more chance to improve adherence, and sadly, she failed. When they took the baby off the ARVs, she begged them for a 2nd chance, but they had already given her many, many chances. So the question in this case was what to do to improve the social situation so that the baby can begin ARVs again. Also, they had to figure out how much resistance had developed to certain drugs. If there is resistance, the drug regimen will have to be changed, and it is likely that when baby starts again, the regimen will be even more complicated.

I thought those two cases were particularly interesting. They give a realistic picture of how difficult it can be to run a successful ARV program in a developing country. Also, they bring up the issue of ethics again (I think I talked about that in one of my earlier blogs…) Choosing which is the lesser of two evils is always hard.

After the meeting, almost everyone in the clinic helped me pack bags of corn-soy blend. This is by far the least fun part of the WFP program, and the fact that so many people helped meant a lot. It was actually even fun because I got to know so many of the staff members better. Before that, I had met them only briefly. Thanks to their help, we managed to fill almost enough bags for the entire week.

And one last update on the WFP program…

Today I started contacting the list of approved volunteers. One woman is coming in on Thursday for the first official WFP training day, and hopefully I can reach the other woman for Monday. Shifting over to a new system is going to be a whole new challenge—We have to change a lot about how we register patients, assign numbers, and distribute food because the volunteer will not have the access we have to the electronic medical records. Luckily, we have the majority of the patients registered already, but I’m certainly glad we are starting early.

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