‘My life with ARVs’: One woman’s experience

Emma*, who is a schoolteacher living positively in Kampala, is on ARVs. She says she feels normal and fine.

“I take one tablet of Neverapin in the morning at 10. Then I take Septrin, Truvada, and one Neverapin at 10 in the night on a daily basis,” she said. “It’s normally better to take it after you have eaten something.”

Not only is Emma on ARV treatment, but she is also taking second line drugs.

“At the beginning, when I had just started, [the first line drugs] had a lot of side effects. I had a feeling like I want to vomit, sometimes I lose appetite, sometimes [the skin] itches,” Emma said about her experience. “Then, I had another side effect: I failed to walk for a month. I was just crawling like a baby.”

For an HIV-positive person who has been on drugs for many years, side effects like Emma’s are common.

Eventually, the virus builds up a resistance to initial regimens and the drugs stop working. Patients whose bodies stop responding to first line treatment are put through a clinical evaluation to determine whether his or her prescriptions should be switched.

Of the 34 million people living with HIV worldwide, about half a million require second line treatments. According to Integrated Regional Information Networks, about three per cent of adults and 4.6 per cent of children in Uganda alone required second line treatment in 2010, and that number has been growing steadily ever since.

Most commonly, it is the people who fail to adhere to their pill-taking schedules that develop resistances to their regimen. “They [the doctors and counsellors] tell you that when you begin, you set a time. When you begin, you maintain that time,” said Emma about ARVs.

Difficulties faced
After 10 years of actively taking ARV drugs, Emma said it is easy for her to adhere to her dosages.
For others, it can be more difficult. Remembering to take, troubles with food security and inability to access the drugs all affect a person’s adherence.

“If you begin on the drugs, you have to take them regularly without missing,” said Emma. “So, if you miss, there are other complications that you may get. Or, if you stop immediately, then the virus will come with all it’s force and you will be finished.”

Hospitals and clinics are using new, special tactics to tackle adherence issues within their clients. The Joint Clinical Research Centre, Infectious Diseases Institute Mulago, TASO and others offer counselling where adherence calendars and positive-living clubs are provided to inspire clients to stick to their regimen.
Additionally, Dr Alex Muganzi, head of Mulago Infectious Diseases Institute’s (IDI) Outreach Department says clients are encouraged to seek peer support, something that has shown to encourage good adherence behaviours.

“At that point, we require them to come with what we call a treatment support buddy, someone that can remind them about their medicines, and someone that can inform us when they’re unable to come back to the hospital,” he said. “So, they will be shown the drugs they will take, how they will take them, what the possible side effects are likely to be, which ones are likely to come within the first few weeks of taking drugs and which ones are likely to come much later in the treatment process, what kinds of responses they should expect, he adds.” Some responses to the drug regimens are better than others.

“I don’t have any problem, nothing, completely,” said Emma about her current condition on second line ARVs. “Though, sometimes it worries me and I’m like ‘Oh, one day I will be walking and then I’ll just collapse.’ But me, I don’t feel anything, not even headache, not even malaria, nothing!” she says.

*Name has been changed for
privacy reasons