July 10, 2008


For a long time, I’ve been meaning to write about my impressions of the South African effort to get AIDS patients onto anti-retroviral drugs. When these thoughts first began stewing, probably back in October, I wanted to be intensely critical of the system and the ways in which I had seen people die instead of taking the pills that could save their life. Now, however, my opinions have shifted dramatically on the subject and I’m happily able to be a bit more positive on the subject.

First, let me emphasize the power of ARVs. There are many people who have been on death’s door, begun to take the pills, and regained an incredible amount of their previous strength. Their CD4 counts begin to climb and they are able to return to many of the normal routines of their previous lives. Yes, it is true ARVs do not work for everyone. It is also true that it’s not clear how long the ARVs will work for some people. But even if it adds a few years to their life, that is a few years in which they are able to help support their family and raise their children. And who knows what new developments in medicine will have come along if and when the ARVs begin to fail? The advent of these drugs (long-delayed in South Africa by political opposition) is an undeniably positive development and we urge any and all who qualify to begin the process of getting on the treatment as soon as possible.

We are not a clinic that can distribute ARVs. We’re not a government clinic and don’t have the resources to handle the program even if we could. The government clinic about a 15-minute (healthy person) walk away distributes ARVs to our section of town.

My main objections to the system earlier centred on the time it took for a patient to go through the many steps necessary before he or she could begin the treatment. Prospective patients need a whole battery of tests (more blood work, a chest x-ray, sputum tests), need to prove they can count pills correctly over time, and must endure extensive counseling with the nurses at the ARV clinic before they can even be given the pills. All of this is done by an over-burdened and under-staffed clinic. I understand there are many good reasons for each of these steps, particularly given the extent to which the patient’s life is about to be changed for good and the importance of staying consistent with one’s regimen. Still, it can take a healthy and capable patient who shows up for all her appointments on time a month or two before they get the pills.

That’s fine for a person whose health has not yet been seriously compromised by HIV. However, early on I saw too many people who were incredibly sick die before they were given the pills. The process was just too long and they were too weak to last. I still know people who have died needlessly like this and it makes me helpless to know that they could have lived. But I’ve also seen some of the ways in which HIV patients do not take care of themselves in the way they need to, primarily with regular CD4 counts, and thereby the delay the beginning of the ARV process for too long.

What has really transformed my opinion of the ARV program, however, has been a surge in the number of people in Itipini who are taking the drugs. As recently as February I found myself speaking quite negatively about ARVs to a volunteer and dismissing its relevance to people in Itipini. Since then, however, an overwhelming number of people (ok, maybe only ten or a dozen but relatively that is a huge number) have alerted us that they are starting the ARV process. They are all at various stages along the way but all of them seem upbeat and in good spirits about it. They are good about showing up for their appointments and getting the necessary tests. All of them are pretty healthy, which means they can all walk up to the clinic unaided. In fact, because they are under no obligation to tell us how they’re doing, some people have just strolled in after a few weeks’ absence and matter-of-factly displayed their new pills to us.

(I might add that what has also helped turn my opinion around is getting to know the capable nurses and other staff at the ARV clinic. I have developed a good working relationship with them in these last few months and it has been enlightening for me to see how they are good people, working within a constrained system, but doing good work nonetheless. In my early months, I was all too ready to rail against them - internally - as incompetents who just “let people die!”)

This, in turn, has spurred us to be even more serious than we already were about making sure HIV patients get regular CD4 counts and urging those who don’t know their status get tested. Because while there are a handful more success stories out there now than when I first arrived, many people still are slack about CD4 counts or miss appointments or find some excuse why they don’t need to take care of themselves.

My hope - and we have been thinking about ways to facilitate this - is that the growing number of people who are on ARVs will be open and talkative about their experiences with HIV and ARVs. Then, not only will people with HIV be more willing to get CD4 counts but people who are too afraid right now to learn their status will be willing to get tested because they know it is not a certain death sentence.

Several years ago, I heard the argument advanced that it makes no sense to spend money on treatment of HIV, because it is an entirely preventable disease and the people who have it are to blame for contracting it. (Tell that to the woman with the unfaithful husband.) Instead, all the money available should be spent on researching a cure and preventing transmission. That is a fine argument to make in the ivory tower of higher education by people with no experience of the disease but it immediately wilts on contact with the real world and especially real people whose lives have been saved because of the millions of taxpayer dollars (primarily Western taxpayers) injected into treatment programs. Because patients are on ARVs for the rest of their lives, the cost of treatment programs will continue to rise as more and more patients are added to the rolls. It’s money well spent.