I have been lucky enough to go with my friend and co-worker, Hanneke (nursing intern from Holland) as she begins her research project for nursing school. To complete her research project, she (WE) will be going to the Molweni township (where the girls' school is) and interviewing patients who were discharged from the Hillcrest Aids Center Respite Unit, the place we are both working. Hanneke will be interviewing the patients to see if they have begun and/or continued successfully with an ARV therapy. She will ask each patient a series of questions about how they get their medications each month, how their family/friends support them, their knowledge about HIV/AIDS & ARV's and also about their particular motivations for proactively taking the medications in the face of stigma and hardship.
As I have mentioned before, not all patients that come into our Respite Unit die from AIDS. Some of our patients come in, their health improves, they get into an ARV treatment program and they are discharged. The hope of the Center is that the patients who are discharged will be able to fetch and take their medications in a timely, appropriate fashion and that they have a support system of some type - friends or family to help them along. It is important to note that the physical, emotional, spiritual and financial support of family/friends is integral for patients here in the face of such harsh stigma and denial that surround the disease. During our first week of home visits, we have realized the many roadblocks and harsh realities that face those with HIV/AIDS in the Third World.
The three of us, Hanneke, a Zulu care-worker and me, jumped in the car on both days and headed to Molweni. We were "armed" with very little information...really, just names, date of discharge and in some rare cases, a phone number. Luckily, everyone in the township knows everything about everyone...so our care-workers busily asked cousins, neighbors and random pedestrians about the whereabouts of the patients we needed to track down. The first home we went to was that of a young man of about 30. He seemed to be in good health and told us all about his ARV regimen, his support system and how he wanted to get better and stronger and "fatter." We left and I felt very satisfied with the interview. We drove around more dirt roads (paths really!) to find our next interviewee when we happened to run into a care-worker from the Center. We spoke with her and told her about the patient that we had just interviewed. The only word of the conversation between the two care-workers was "unamanga" or LIAR in English (Attention all Zulu scholars...please excuse the spelling guess). To sum things up, the woman told us that he never started ARV's and that he was lying throughout the whole interview. Needless to say, we were a bit bummed.
We put that interview behind us and went to see Sipho, a man of around 50 or so. A neighbor hopped in the car with us to show us the way. We arrived at his house and he granted us the interview. This time, Hanneke asked to see his clinic card, all medications and treatment information. She counted his pills and he was right on track. He was a very thin man but seemed to be on the up and up. When asked why he continues to take the tedious regimen of ARV's Sipho responded, "I don't want to die. I know that this is the only way I will live." Plain and simple right?! Sipho then told us that he will be losing his Disability Grant in a month and that the grant is the only income he has. The income is used each month to take the taxi to fetch the only thing that will prolong his life. He said he wasn't sure what he'd do when that money was not coming in any longer. We are in the process of trying to help him secure another location to fetch his ARV's. Life here is not easy.
Another home visited I tagged along for proved to be my most helpless moment here so far. We arrived at a home and were greeted by a very jovial woman. We entered the one room home that was no bigger than a large SUV. Sitting on a bed, was our patient, a 23 year old woman. She said hello and when asked how she'd been since she left the Center, she burst into tears. She explained that she was sick and sore all the time. She was quite thin and emotionally drained. I was kind of hovering in a corner because there wasn't a ton of space. I watched as the girls' mother began wiping tears as she watched her daughter is obvious pain.
The girl explained that she never started ARV therapy because they could not get to the clinic to finish her testing (CD4 Count). She was not eligible earlier because her CD4 count was not LOW enough. In other words, because of the lack of resources and the huge amount of need, patients here have to be "sick enough" to get the proper treatment. She just had missed the mark. Now, she is unable to make it to the clinic to get an updated test done because she too, lost her Disability Grant which was her sole income source. This young, beautiful girl is too sick to work, cannot receive medical treatment and was obviously terrified for her future.
The issue of Sustainability came up in a big way for me during this encounter. It is the policy of the Respite Unit to be of service in many ways, but not to enable people to become dependent, not search for help and answers on their own. Many times during my short time here, I've wondered how a small amount of food or a ride to the clinic could actually do more harm than good? Is that possible? Isn't that why I'm here, to help people who need it most? I have a feeling that I'll struggle with this the whole year, but boy, do I wish it was simpler! We had to leave that young girl and her mother as hopeless and helpless as we found them. Hanneke gave them some suggestions about testing sites and "next steps," but then we had to get in our car and drive away. I have never felt so helpless in my entire life.