Jacob

Jacob lost his wife to HIV. He has been coming to our clinic for about five years now. Apparently the staff (and his wife, before she died) had a hard time convincing him to come in for care, but he finally did. He has a few children; an older daughter called Rose is his primary caretaker now. Rose is 18 and is a full time student in University, as well as taking care of a very ill father and her six year old brother Roger who is also HIV+. Jacob probably contracted TB last fall, but the disease worked on his body for months before we caught it. Insidious weight loss, a cough that got treated like a common respiratory tract infection, fevers that weren't identified..the result of this mis-diagnosis was a two month admission (Jacob is blessed enough to have a brother with a job who footed the bill for the admission..in his own words, the investment in keeping his brother alive is keeping his brother's children out of his house...) and Jacob has now been a homecare patient, post admission, for two months. We find him almost the same every time..emaciated, depressed-looking, sitting in a wooden chair in his ten-by-ten foot living space. He has just completed the initial phase of TB therapy, and is also on antiretroviral therapy. He struggles with painful peripheral neuropathy, a common side effect both of the ARVs and one of the TB drugs.

Jacob is the perfect example of the horrific combination of TB and HIV. Because TB is a disease of the immune suppressed, and our HIV clients are immune suppressed, it is a match made in--well, not heaven for sure. TB also spreads really well in crowded conditions, which for most of our clients is their life in a nutshell (no pun intended.) TB also spreads really well in our crowded reception area, where patients often wait for hours to see the doctor. We are only lucky (is that the right word? that Uganda doesn't have a really big problem with drug resistant TB at this point.

It would behoove us to screen a little better, to have a more open waiting area--but mostly it would be good to catch the disease before we found our patients wasted and unable to move out of bed, and beyond whatever help we have to offer.

TB therapy (and I am so far from an expert on it, what I know I've learned from our client's experience) is fairly hellish. It involves a certain time frame of intensive therapy (three to four horse-sized pills a day, which often cause nausea and vomiting) and then a few more months of slightly smaller pills(that still come with their own set of side effects). If this course of treatment works, then they are finished with treatment. If it doesn't ,it means they probably have drug resistant disease, and need a second line therapy. Luckily, this therapy is available here.

However, our client's tolerance for long courses of intensive therapy is very low. This burden of medication (even if it is free) comes on top of the burden of the rest of life. Generally the caretaker is a woman,the bearer of all other responsibilities in the family. As one of our clinical officers said yesterday, it is ridiculous that people keep dying from a disease that is completely treatable--and the treatment is even free!

So what is really keeping clients from tapping into this free therapy? Is it fear of the drugs? Ignorance on their part? My boss likes to say "blame the patient last.." this is a good motto, so we could look at failures on the part of the medical system. I could list for you many different structural changes that might make it more likely that we would identify people with active TB early in the disease process (some of these changes are going to be implemented soon in our clinic, thanks to some new staff with energy to burn), but I am sadly unsure that even these hopeful interventions will make much of a difference. The disease burden here is so high, the medical staff so overworked, the support systems (labs, x-rays, medications) are so unpredictable or unreliable...

I have had a few patients pull back from being bedridden with advanced TB. One client, who I was sure (in my cynical, bitter mind) was going to die managed to recover by the grace of God, and was spotted yesterday zooming up to the clinic on a bodaboda with a new hairstyle. If anything was going to give me hope, that would be it.

So what kind of hope do I have for Jacob? As he sits in his small hut, under the shade of many papaya and guava trees, he looks at the house he was building for his family before he got sick. He has the blessing of free medication, the blessing of family (a daughter with more inner strength and reserve than anyone I have met so far, and a brother with financial resources) and the blessing of still being alive, today, which in and of itself is the biggest testimony to God's grace in his life.

Regardless of global fund scandals that steal our drugs, overwhelmed medical workers, reception areas that spread TB among our clients like the plague, and pill-burden of too many treatments, I pray grace for Jacob and his family. Grace and mercy for all of our clients who are fighting not one disease, but two. Strength for the women who care for them, and faith for those who bring the medical expertise--that we would keep working towards the elusive goal of healing.