In my first week working for CHAI I attended the annual conference bringing together all CHAI Access teams. We watched a documentary on tuberculosis (TB), following three patients. Besides the general pain and misery caused by the disease, the thing that actually left me astounded was the invasiveness of the treatment. I am part of CHAI’s Access team and we are working so hard every day to increase people’s access to medicines. However, hardly ever do I realise that side effects caused by the treatments for HIV and TB are often almost as bad as the infection itself. Vomiting, anaemia, renal failure, bone demineralisation, the lists seems endless. When studying the different types of antiretrovirals I did not even know half of the words describing the toxicities. Some are severe enough to require a patient to switch drugs.
Adherence is key
For a treatment to work well, it is very important that the patient is adherent. Medication adherence can be defined as the extent to which a patient takes the medication in the way intended by a health care provider. Non-adherence is very common, typical adherence rates for medications prescribed over long periods of time are approximately 50-75%. However, people with HIV that are on antiretroviral treatment (ART), must ingest 90-95% of their prescribed doses consistently to successfully decrease the viral load in their body. Nevertheless, the average rate of adherence to ART is approximately 70%. There are many studies that try to define the main reasons for non-adherence. But just picture the following.
‘I am a 23 year old woman living in the Kaabong district, in the most Northern part of Uganda. I am HIV positive and on antiretroviral treatment. I take AZT/3TC/NVP, a treatment of two separate pills. The dual AZT/3TC and a single NVP pill. AZT/3TC/NVP is dosed twice daily, which means that I have to take four pills a day. To get these pills I have to walk seven kilometres to the nearest health facility. Usually I only have to come once every two months, and I am given enough pills to last for the next two months. However, sometimes there are issues with deliveries from the central warehouse and they can only give me one month. Or I get a lower dose, which means that I have to take six pills a day. When I go to collect my medicines I often have to wait multiple hours, so I have to take time off from work. This is a problem, because I do not want my employer to know that I am HIV positive. Fear of my employer firing me also means that I have to take my pills in secret, which makes it difficult to take them at the same time each and every day. When I take the pills they make me hungry and I do not have the money to buy enough food for myself. So sometimes I only take the pills in the evening…’
How are we supposed to ask patients to be fully adherent when there are so many hurdles to overcome? And that is even without the toxicities that come with the treatment. Before I started working for CHAI, my colleagues organised an adherence challenge in the office. Everyone was assigned an ARV regimen, with a dosing schedule and mints instead of the actual drugs. Apparently, most colleagues failed to reach even 50% adherence. And that was for a bunch of people with no reason not to take their medication on time, not experiencing side effects and unlimited access to their meds. I once read an article that explained that for a long time HIV patients in sub-Saharan Africa were thought to be less adherent because they are generally not as punctual as HIV patients in Western Europe and the United States. Evidence from the study and from our own CHAI adherence challenge shows that adherence is just as low for punctual Westerners.
A thing or two that could be improved
Going back to the 23 year old woman, thinking about this and the many other systemic challenges to the health care system in Uganda overwhelms me sometimes. In the past weeks I have visited a number of different public health facilities. These visits are interesting, shocking, sad and wonderful at the same time. There are so many competent doctors, nurses, lab technicians and midwives, but the circumstances in which they are working are challenging, to say the least. No electricity or running water (and thus no computers but numerous paper patient files and registers instead), no storage space for drugs (leading to open boxes of ARV’s lying on the floor of a room where patients are treated), 30 beds cramped into a small room (and in the Netherlands we complain about not having a room to ourselves when lying in the hospital), waiting rooms filled with mothers and babies without room for them to sit… Often, health facilities are made up of number of buildings on a grass area with some chickens roaming around. Imagine that on the parking lot of the Amsterdam Medical Centre.
I know we are all trying our best to make things better, but where to start? Maybe we are better off constructing roads instead. Or setting up electricity poles. Do not get me wrong, I believe in our work and I now the situation is improving two baby steps at a time. But sometimes I just wish some of the money to be spend on the 2016 Ugandan presidential elections could be spend on getting 3,000 health facilities a computer and a solar panel to keep it going.