In my ethics class this week, we talked about the ethical issues raised by an antiretroviral treatment (ART) protocol in Lesotho, a small country landlocked within South Africa. The protocol was meant to give ART to people who needed it the most and people who would stick with it. Sticking with the treatment was paramount to prevent resistance to the treatment. The people developing the protocol decided that ideal candidates would have the knowledge and ability to take the medicine themselves on time every time, and that the candidates would also disclose their HIV-positive status to a friend or family member. That friend or family member would be their “coach” or “advocate” and help keep the patient in line with their treatment, a sort of peer pressure to keep the patient in compliance.
There were several problems with this protocol. For instance, not everyone in the community who was HIV-positive knew about the program. There were also instances when people who didn’t qualify for some reason were still taken into the protocol because they knew the right person or managed to have a compelling story. Also, people who were too sick from AIDS would not be able to go to the clinics and get the medication on their own. And then there were all of those people who would not disclose their status for fear of the very real and many times very bad stigmatization in the community.
All in all, you could probably argue the situation either way. On the one hand, you don’t want to waste the available ART on people who won’t stick to it and whose lack of compliance will lead to antiviral resistance. On the other hand, you want to give ART to as many people as possible to reduce the number or people who develop AIDS and improve the lives and health of those already with AIDS. Of course, it goes without saying that there were probably alternatives to how the candidates for the treatment were chosen. That whole thing about disclosing their status to someone just didn’t sit well, especially when you hear horror stories about people with HIV/AIDS being mistreated.
One of my classmates in the class is a physician from Uganda. He said that they saw the same things happening in Uganda, where protocols aimed at maximizing compliance caused low enrollment rates. According to him, the response was to decentralize the clinics and make them more accessible. That is, the patient didn’t have to go to a central clinic that would be far away, and the clinics close to them would be staffed more professionally. But he was quick to clarify that Uganda was not Lesotho.
Needless to say, the discussion that we had in class was very, very interesting. Many of my classmates had interesting reactions to the Lesotho case, and they had even more interesting suggestions on how to balance the needs of the patients and the maximization of the ART available. Some said that the sickest should get the therapy first in an attempt to save lives. Others said that those who had not yet developed AIDS should get it first in order to prevent more cases and, thus, more deaths.
There used to be a time when I would look at these cases and thank my lucky stars that I wasn’t the one making those kinds of decisions (or help guide those decisions). Inevitably, someone is going to be left out, and someone may die. With the current path that I’m taking in my career, these decisions are going to come at me, and they’re going to test not only what I’m learning right now in the doctoral program but what I have learned in the past as a person and as a professional. Part of me can’t wait.
Part of me can.