HIV : The Care And The Caregiver

When I went to the HIV treatment center in Lagos University Teaching Hospital (LUTH) it was out of desperation, fear and frustration.

 You see I learnt that I was HIV positive when I was pregnant. After that realisation came the normal fear and sadness, but my doctor, in whose hospital I registered for my antenatal classes, was quick to assuage my fears. He told me how the fear of HIV was worse than the illness itself and how it did not have to affect the baby. He explained that he had several clients who also were diagnosed HIV positive but were living relatively healthy lives with their children. He said because of the nature of the illness and to cut down risk of mother-to-child transmission of the virus, the only mode of delivery for me, would be by Caesarean Section. The key was taking your medication. My medication and sundry tests would come to about  10000-15000 naira every month (roughly $80-100).Every other week, I was required to do a liver test which basically required drawing blood but costs a little over half the cost of the drugs. He repeated over and over that I should tell him I needed a refill at least 2 weeks before my drugs ran out because they were difficult to acquire. He didn’t mention what medication he was giving me and I didn’t ask. I received about 4 blister packs of the same small whitish pill.  But I ALWAYS read the small print and I read the name of the drug, stored it in my memory with the intent to google it later.

Three weeks after I had been taking the drug – two tablets a day which he later changed to one- I believe I went in for a refill when he changed my drugs. He seemed a bit agitated and distant when he was giving me the new one but I put it down to the stress of procuring the drugs. Infact, I was actually happy to stop taking them because they made me feel really ill and gross. He told me to discontinue the old drugs immediately and begin this new one which he called NEVARIPINE. The thing is, at that time I was very bewildered by the whole pregnancy, being abandoned by the all-of-a-sudden married boyfriend( by the way, that issue needs an explanation) and losing my home that I just wanted something to take care of itself, or at least be taken care of. Because of this I did not pay attention as I would have ordinarily to some issues. Anyway, after the drug swap I was on that medication and routine for about 8 months. That in addition to the other costs and routine of antenatal checks and balances. As the time for delivery drew near he began to remind me repeatedly about the Caesarean and how I had to pay for it on time. His charge was 300000 naira (about $2000).

 By then, everything had began to come down heavily on me. My friend who I was staying with had started showing signs that she needed me to leave as a matterr of fact she was deliberately making life difficult for me, my job had been taken from under my feet, like a carpet, and I had fast run out of cash. I went to plead with my doctor, since he was the owner of the hospital, and could make the rules, at least grant me a payment plan. He seemed to consider it but told me that the problem was that he would have to invite another doctor in for the surgery and that even doctors were discriminatory of patients with HIV. He even put a call through to someone who he introduced to me as the surgeon for my Caesarean. He spoke a bit to the guy about my situation and the guy seemed to be backing down a bit. And just when he had practically said the fee could be halved, my doctor said ’ but she’s XYZ positive’. That is the way some doctors refer to the virus. Immediately the guy on the other end said ‘then let her pay the full fee.’ The conversation ended very shortly after that. I wondered aloud why my doctor had mentioned my status and why the other doctor reacted that way. He said as his colleague he was bound to full disclosure and that there are risks involved in treating a patient with HIV so they- the doctors- always ask for a high amount of money. He said he just decided to attend to all patients, including HIV positive ones, because he did not like the discrimination and just wanted to help ease the stress. ( He had said this many times previously.) It was after this that I moved out of my friend’s house, which was in the same gated community as my doctor’s clinic, to another friend’s, and that I began to look at other options as I described here. It was also after this that I googled the first drug I had been taking as an Anti RetroViral (ARV) drug. The brand name was EFAVIR but the generic name is EFANVIREZ.

Please google it but for the purpose of this blog, I will explain briefly: Efanvirez is not a drug to be given a: to pregnant women because it can adversely affects the foetus b: alone and not as part of a combination treatment because it has very grave side effects  and c: indiscriminately or as a first line of treatment, without tests for CD4 counts and viral load to determine if it is the regimen that is required.

That notwithstanding, a freelance gig led to a meeting  with a would-be contractor, who pointed me in the direction that ultimately ‘opened  my eyes’ and saved my life and that of my baby.

(to be continued)