When I was in Botswana I had to take an antimalarial pill every morning for 3 weeks. One morning half way through I realised I had forgotten to take my pill for three days in a row. Imagine how difficult it is to take antiretrovirals every day. Most have to be taken twice-daily 12 hours apart, say 8am and 8pm. Some have to be taken with food for absorption – taken on an empty stomach will result in very low blood levels of the drug. Low drug levels allow HIV to grow and become resistant to those drugs. To stop resistance happening, studies suggest that ARVs must be taken correctly 95% of the time.
That means getting it wrong one time on twenty is ok, but two times in twenty is not ok. When I was taking my antimalarials, I got it wrong three times in twenty days – and then I could stop anyway.
When I was in Lesotho, I did a ward round with Mohlakotsana Mokhehle, Chief Dietitian at the Queen Elizabeth II Hospital. We spent some time with a 42 year old patient who was ready for discharge. She had developed lipodystrophy whilst on her initial ARV regimen: d4T, 3TC and Nevirapine, and had switched to the second-line regimen: AZT, ddI and Kaletra. This is a tough regimen to take because ddI must be taken once a day without food, whilst the Kaletra formulation used in Lesotho must be taken twice a day with food. The patient told us she was waking at 6.30am, at 7 was dissolving her ddI in water, at 8 was taking AZT and Kaletra with breakfast, and at 8pm again taking AZT and Kaletra with supper. At first this seemed ok. At 7am ddI was dissolved, and she wasn’t having breakfast until 8am. Kaletra was being taken correctly with food. Dietitians are trained in a very particular way when taking a diet history, and so Mohlakotsana asked the patient if she had anything to drink with breakfast.
“Yes”, said the patient, “the ddI”.
The guidelines in South Africa, Botswana and Lesotho for ddI all say the same thing: “Dissolve the ddI in water, wait 30 minutes, then eat”. You can see how health professionals and patients might be confused. If the guidelines said “Once ddI is dissolved in water, drink it, then wait 30 minutes before eating” then confusion might not occur.
In KwaZulu Natal I met John, a 3 year old boy who had also just switched to taking ddI. In Southern Africa I observed that most people are encouraged to take their ddI on an empty stomach between breakfast and lunch, or between lunch and supper. In the UK we generally recommend that ddI is taken after waking up, then breakfast some time after, once the ddI has been absorbed. John attended clinic with his grandmother. He was very thin for his age, and showing signs of severe malnutrition. It was vital that he should eat small meals, snacks and nutritious drinks throughout the day to reverse the malnutrition. The dietitian I was with gave wonderful dietary advice to John’s granny. But I was concerned about the ddI. The doctor and pharmacist had advised granny that John should have his ddI on an empty stomach between breakfast and lunch. This would limit the opportunity for extra nutrition at that time.
In the UK dietitians have an integral role in helping patients adhere to their antiretroviral regimens. Dietitians have the skills to explore not only patterns of eating and drinking, but to look at lifestyle in a holistic way. Dietitians can quickly ascertain if patients might have a lack of routine in their lives – a warning sign that they might have difficulties achieving the 95% adherence needed to prevent viral resistance occurring.
With John in KwaZulu Natal, we were able to go back to the doctor and pharmacist, and together agree that ddI should be taken before breakfast. Without that multidisciplinary approach, John may have ended up taking ddI with food, and perhaps becoming resistant once more. Initiating people onto ARVs is only the first part of the battle against HIV. Supporting adherence is a major challenge and dietitians in Southern Africa must become more involved. A primary recommendation in my reporting from this Fellowship is that dietitians must be part of the team of health professionals at every ARV clinic.
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