March 12, 2008

Too Late

Last week, I thought I had a story that would make a good, solid, uplifting post about how South Africans are working to overcome HIV. But I tarried in writing it and now the end of the story has changed and is much more depressing.

Nomtheto is 28 years old and last November was carried into the clinic pretty weak, emaciated, and generally in poor health. Of course, she’s HIV-positive so we did our best to fortify her with dietary supplements and vitamins and drew her blood to see if she was eligible for anti-retroviral drugs. The trouble with the clinic is that people have to come in to see us for us to get progress reports on their health. Over the course of the next few weeks, she never returned and we wondered what had become of her. Not for the last time, I was convinced she had died.

In January, a relative came in and asked us to help bring Nomtheto to the clinic. I went to get her and she was even weaker and thinner than before. But when I read her medical records, which patients keep at home, I found she qualified for ARVs (her CD4 count was 46 – you qualify at 200 and a healthy person’s is over 500 and sometimes over a 1000). To my very great surprise, I found she had even begun the initial steps of the very long and convoluted process that lead to ARV treatment. (My surprise was that a person with a CD4 count of 46 who could barely stand up was making it to the clinic for her appointments. As I’ve noted before, transportation is an overlooked but crucial part of health care infrastructure. Nomtheto lives a good half-hour walk, for a healthy person, away from the ARV clinic.) All she needed was a treatment support partner and she could carry on with the process. But when we explained this to her mother, who came to the clinic with her that day, the mother said she didn’t want to be the support person because it meant too much waiting in line.

We didn’t hear from Nomtheto again for a long time and this time I was convinced for sure she had died. But last Monday, a dying, wheezing truck, belching with smoke pulled up in front of the clinic and Nomtheto was carried out. To my very great surprise, she was alive and, in news that shocked me, she had been given ARVs two weeks earlier. (Evidently the mother re-discovered her mothering instinct as she was the treatment support partner.) The owner of the truck was a friend or family member who had been driving Nomtheto to all her appointments and they hadn’t missed one. I was so happy to see a patient who had successfully navigated the hurdles and been given ARVs (this is the first patient whose care I’ve been involved with who’s gotten the drugs) that I took a picture of the pill bottles just to prove they existed. Mentally, I began composing this post, ready to extol the virtues of ARVs and dedicated South Africans who took an active interest in their own health.

There was just one problem. Nomtheto looked worse than she ever had before. Her head was shaved (that’s somewhat common here), she was as thin as could be, and with her deeply sunken eyes Jenny described her as a “concentration camp survivor.” But Jenny has frequently mentioned people who’ve been carried into the clinic nearly dead only to get on ARVs and be walking around a little while later. I was still excited by the ARV news and took a picture of Nomtheto so in a few months I could take another of her after she had gained weight and was back to her old self.
Jenny was rightly concerned about her health and referred her to the hospital. We put her back in the truck and off they sputtered. A few minutes later, they phoned to say the truck had predictably died and they were only partway there. I went to pick them up and we drove the rest of the way. Nomtheto had to be carried but she was as light as any adult I’ve ever had to pick up and I laid her on the back seat and off we drove.

At the hospital, it was a mob scene, as I am used to by now, that is always at least a little bit discomfiting. Unlike on a similar, earlier trip, I didn’t use my skin colour or knowledge of big medical terms to secure Nomtheto favourable treatment. I made her comfortable, made sure her mother got in the right line to check her in, and then left. There were so many other people who were suffering so much and I was feeling pretty positive about Nomtheto’s health that I thought it would be fine if she had to wait to be seen. We found out the next day from her sister that Nomtheto had been admitted and was being treated. I assumed her poor health was due to side effects from the ARVs and once she got over those she’d start improving. This is where I expected I would conclude this post.

But on Monday another sister came in the clinic. I casually asked how Nomtheto was, expecting her to say she was at home and improving. But I couldn’t understand her initial response and an embarrassing Xhosa conversation ensued, in which I was asking questions assuming she was alive and the sister was answering knowing that wasn’t the case. Eventually the sister looked at me and said in very good English, “she died.” (I find times like these so frustrating. If your English is so good and my Xhosa so bad why didn’t you just speak English right from the get-go?)

A long while ago, I promised a post about the ARV system in South Africa and what I’ve seen of how it works. I haven’t delivered on that promise yet mostly because my anger and frustration about the topic come across better in person, when I can animate it with hand gestures and facial expressions. But consider this the first stab at that post. The system worked – Nomtheto got her pills – but it was too little, too late.