AIDS Ministry

I wrote a little bit earlier about Spring of Life (SOL) and what they did, but I’d like to go into more details, as I came to Africa intending to focus on HIV ministry. Spring of Life for me embodies much of what my time in Nigeria has been like---both great joy and great frustration. Nigeria has roughly an 8-9% HIV positive rate, which on the surface seems very little compared to countries like Botswana at 30%, but it’s deceiving as Nigeria comprises about 20-25% the population of all of Africa. So many Africans who are HIV positive live in Nigeria. The stigma of HIV is not as great as it was, but is still quite a hindrance. We see many patients who don’t want anyone to know they are HIV positive, not even their spouses, because they are afraid of being abandoned, abused, or simply just can’t deal with the perceived shame of it all. We even see people who refuse to get tested themselves when their spouse dies of HIV because they just can’t bear knowing they have HIV. It’s ethically a hard decision for the SOL counselors, because we’re supposed to respect patient privacy and assure we won’t tell anyone, but at the same time, it is hard for us to see a husband with HIV, taking anti-retrovirals (ARV’s) (HIV medications), who is getting better on the meds, but refuses to tell his family, and as a consequence, the wife and children die of HIV without ever knowing they have it. It’s hard not to feel like the man has killed his family while preserving himself. Unfortunately, we see many cases like this and sometimes we tell them they can’t be treated unless they bring their family in to be treated, but sometimes this scares them off and they never come back again. Would it have been better to have been less forceful and just treated him and counseled him persistently but gently, hoping in time he would change his mind? We don’t know.

It’s also quite difficult because there are no guidelines to help handle difficult situations. Come to think of it, there are few guidelines at all. In December, PEPFAR (the President’s Emergency Plan for AIDS Relief, an American program working through the Nigerian government) came to Evangel and said they wanted to give us money to start free treatment for HIV patients. Which is great. However, they said they wanted us to start ASAP and have 500 patients enrolled by May and 1000 in a year. Now, that is a crazy expectation. But we had to agree or risk losing the funding. So in February, they started the PEPFAR program here with very little training and it has been a management nightmare. Since SOL has been the ECWA HIV ministry for a while, it seemed logical that SOL might handle the PEPFAR program, but Evangel decided it wanted to handle it themselves. The miscommunication has been terrible. At SOL, usually what happens is when a patient comes in, he/she get pre-test counseling, so the patient understands what testing means, how you get HIV, what the next steps are, etc. Then they are tested, and then they get post-test counseling. If they are positive, they are enrolled into PEPFAR, set up to go to clinic to get initial testing done to see if they need ARV’s, and if they need ARV’s, they are counseled on side effects, told they must take their medications everyday, etc, and someone follows up with them, even doing home visits to make sure they are ok and taking medications properly. However, if a patient doesn’t go to SOL, if they instead show up at clinic without going to SOL first or find out they are HIV positive during a hospital admission, well, then, all bets are off as to what happens to them. Some people get put on ARV’s and are never told what side effects to expect or are never told why they can’t miss even one day of medications (HIV becomes resistant to medications very, very fast if you miss doses). Depending on what doctor you see, you may take anywhere from 3 to 7 different lab tests before you start ARV’s. You might be asked to take an antibiotic for life, or you might be asked to take it only until you start ARV’s. You might be told you have to pay for all medications that aren’t ARV’s, or you might be told PEPFAR will pay for all your medications. You might be referred to SOL for follow up, but you might not. The point is, the doctors are told, “here you are, here’s some HIV patients, here’s the PEPFAR paperwork you must fill out, go to it!” and they have no idea what is allowed, what isn’t, what they need to do, etc. And SOL gets frustrated because patients who should be counseled don’t get counseled, no one tells them when their patients get admitted or discharged, etc., so patients often get suboptimal treatment when they very easily could have gotten great care. Training would really help, so each person involved in PEPFAR knows his role and what he needs to do, and guidelines would be great, too, so that each patient gets consistent and good quality care, no matter which doctor they see. But PEPFAR allows each hospital to do their own thing and expects them to do it NOW, and it really causes chaos. It really doesn’t help that patients can really be difficult too. You often talk to them and explain their disease and their medications till you’re blue in the face, and they will say, “yes, yes, yes”, but next week, it’s like you never had the conversation. Sometimes you give them medications and instead of taking them they sell them for ten times as much. Sometimes they stop taking their medications and you never know why. Some never come back for follow up. I have learned to never ask why, because there is never a good answer.

A good example of all these problems is an HIV positive patient of mine named Monday, who came in a few days ago from another hospital. He had been admitted there because he had been (and still is) very sick from HIV, with very severe anemia. He had a huge open ulcer on his back that the other hospital finally felt they couldn’t deal with so they sent him to us after he had been there almost a month. When I read the admission notes, I was under the impression that he was on ARV’s already and we were giving it to him. After a few days, though, I realized something was wrong. Every medication we give a patient must have a prescription written and it must be documented on his drug chart, and I had not seen any ARV’s on his drug list. He’s too sick to come to clinic, so clearly he wasn’t getting ARV’s there. He had never been seen by anyone at SOL, so no one there was helping him get the ARV’s. There were no labs reflecting routine investigations to follow his disease, no signs we were doing anything to treat him for HIV. A later note indicated that we were going to look into starting him on ARV’s, contradicting the idea that he was already on ARV’s. I went to speak with him, and it turns out that I was the first person to ever really sit down and find out what his situation was! Monday was from a town 1.5 hours away from Jos and had been started on ARV’s in January. There is no PEPFAR there, so he was paying himself. He couldn’t afford the medications anymore so he stopped taking ARV’s in March. Someone told him to come to Jos to get free medications, but they didn’t know which hospital. He ended up at a hospital that didn’t have PEPFAR. When they admitted him, they asked him if he had taken ARV’s. He said yes. They never bothered to find out if he still was taking it, if he had some left, etc. They just assumed he did and never looked into it. And he is partially to blame, because he never told them more about it. He never said, “yes, I took them but now I’m not, I came here to get free medications”. He only answered what they asked and that was it. It’s a common occurrence here.

So he went at least a month without ARV’s. When he was admitted to Evangel, the same thing happened. They read the note from the other hospital that said he was on ARV’s, they asked him if this was true, he said yes, and that was that. The doctors here have been too busy to look into it, and didn’t think to refer the patients to SOL because, well, are they supposed to? Who knows. It’s tragic because he probably has drug resistant HIV now, and who knows what he was taking? Not him. What should we give him now? Who knows. The doctors will of course do the best they can, but his options are limited. He said that he had people who were treating him, but he felt as if many people had deaf ears and never listened to what he had to say, and didn’t explain much to him. He often felt helpless and hopeless and didn’t know what to do. And, good old stigma, he never told his wife. She became suspicious when he kept getting sick and hospitalized so this week she went to get tested, and sure enough, she’s HIV positive and needs treatment. So I prayed with him and went to SOL and spoke with them about him. I hope he never gets lost to treatment again, and always has someone who will listen to him through SOL.

Monday has such a sad story, as many of our patients do, and the complexity of culture, poverty, poor management, etc, can seem overwhelming. How can we help when so many things need to change and don’t seem like they ever will? Yet, for every Monday that we have, we also have those patients who do well, who we help, and they get better. We have two little boys named Shama and Shaibu who were the sickest babies you’ll ever see, they looked like tiny shriveled old men when I first met them. Both were from poor families where everyone was starving and sick. I thought they would die. Yet, SOL stepped in, helped them with hospital bills, gave them money for food, taught them good nutrition, went every week to visit them at home, and it has been a miracle. They both put on weight and have cheeks now!!! They look around curiously with bright eyes, like normal babies, and smile. When we see patients like that, we think, “thank God, we could help at least one person, and that makes this all worth it,”, and to see the smile on their mothers’ faces as we make a big deal over how good their babies look--it’s beautiful. It reminds me that despite the problems, Africa has many happy stories too.