o This has been the best part of the experience so far, driving for 30 minutes to an hour to visit an ICAP Care and Treatment Center, which provides us an opportunity to see the local hospital and interact with the local staff.
o Work Day 1: Ndorage
• This is one of the better hospitals in the region. We came here to install a new computer, since their previous one was not working. They use the computers to enter in information to the patient database – a national registry of patients with HIV. We learned about their filing system, how patients are given ID numbers based on their primary healthcare facility, their large registry books that follow patients for 36 months, and their electronic database entry.
o Work Day 2: Rubya
• This is the district hospital, is comprised of many buildings, and even contains a nursing school. ICAP opened up a brand new CTC building a few weeks ago. We had a chance to speak with some Peer Educators, which really shed some light on both the advancements of HIV understanding and care in the region. Kagera region was one of the first places where HIV was discovered. We spoke with two women whose husbands had died in the 1990s from HIV, after which they were subsequently tested themselves and turned out to be HIV positive. They described both their work in trying to fight the stigma associated with HIV and to reach out to and educate their peers with HIV. Their work is particularly meaningful as they can often form a bond with other new HIV patients that clinicians may not. Patients may be afraid to discuss certain issues with the nurse or doctor, but will feel comfortable speaking with a peer. I think there is also a strong element of empathy that comes with a Peer Educator that feels very different from the sympathy of a clinician. We asked the women specifically about any discrimination they had faced personally and they described stories of not receiving inheritance because their in-laws thought they would “die soon” (and that was 13 years ago) and mostly people being shocked that they were still alive today. It seems that they have been able to survive and do well for themselves through some microfinancing opportunities. In terms of their questions for us, they were primarily concerned about medications one day not being available or what would happen in the event of resistance. We discussed with them that much of the resistance that occurred was due to single drug regimens and that resistance was much less likely these days as a result of multi-drug cocktails. There are very few patients here on second line drugs, which I noticed is drastically different from the HIV patients I have seen in the U.S., particularly at NYPH, where it seems that a significant number of patients have failed previous treatment regimens. On the whole, I am very impressed with the multidisciplinary aspect of their approach to HIV here. Having peers involved, in addition to medical personnel, I think greatly enhances their ability to reach out the patients. In a place where resources are scarce, the one thing that does seem somewhat bountiful is the human aspect of it, the community that has now formed to support HIV positive patients.
o Work Day 3: Mugana
• Mugana is a faith-based Roman Catholic clinic. We attempted to do some datacleaning here, analyzing the completeness of their database and also doing random checks of their paper files for quality assurance (i.e. – consistency between the paper chart and the computer). There is much to say about the sisters who work here, but I think Erin will write more about it. In brief, we met a sprightly Indian nun, Sister T (pictured above), who had worked in the region for many years that I have come to admire greatly. She has a simple life with few personal belongings, but is far from a simple woman. She had both incredible insight, a pleasant sense of humor, and a strong sense of humanity all bundled into her 4’6” body.
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