For the last few months, Senzeni has been faithfully but secretively taking a once-a-day pill to help protect herself from the HIV and Aids pandemic, but the fear of being caught by her husband or in-laws is slowly getting the better of her. She has considered abandoning the project altogether, but part of her wants to remain uninfected.
Like many women in Africa, Senzeni’s fears are quite understable because stigma, manifesting itself from social disapproval to violence, is real.
This year a significant number of people in Africa started their HIV and Aids pre-exposure prophylaxis (PrEP), the 22nd International Aids Conference (Aids 2018) in Amsterdam heard recently.
PrEP was probably the dominant subject at this year’s conference — there were far more sessions devoted to it than any other topic. Under the PrEP initiative, those at high risk of HIV infection are given medication to reduce the risk of contracting the virus at least 48 hours before an encounter with their partners.
Ruth Nahurira from Uganda, one of the participants in a PrEP trial, testified in front of a huge audience how petrified she was of being found out as infected by the HIV and Aids virus, but still did not give in.
“I did not tell anyone that I was on the PrEP programme, including my own husband. I was afraid that he would think that I was being unfaithful.”
“Women need to be empowered and this is one of the best ways to be in control of your health and not leave it in the hands of your spouse.”
Although she later shared her secret and thankfully did not suffer violence, she urges other women to protect themselves.
She, however, felt the issue of stigma and violence was hampering progress in her village because many women still shied away from the programme.
The Food and Drug Administration approved Truvada in 2012 to lower the odds of infection for HIV-negative people who are at high risk. The blue caplet did not catch on immediately, but now many nations including Zimbabwe are rolling out the strategy in earnest.
Distribution of PrEP in Zimbabwe, however, has mainly been concentrated on sex workers and anyone at high risk of contracting HIV and Aids.
Speaking at a stakeholder meeting for Dreams (Determined, Resilient, Empowered, Aids free, Mentored and Safe) project last month, Health ministry’s TB and HIV prevention national co-ordinator, Getrude Ncube, said so far 56% of PrEP drugs were being consumed by sex workers, while 20% were being used by serodiscordant couples (where one partner is HIV-positive and the other HIV-negative).
Pilot PrEP projects have been underway in some African countries for several years. But it was only in the late 2017 that some countries – notably Kenya and South Africa, as well as eSwatini started serious PrEP availability programmes for wider populations.
In South Africa, roughly 25 000 to 30 000 people have started taking PrEP; Kenya has initiated PrEP in about 25,000 people; Zimbabwe in about 5 000 and the 2 250 in eSwatini who have been assessed for PrEP will, if all of them start it, be about three times the number per head of population compared with the much larger Kenya.
Truvada for PrEP provides 92%-99% reduction in HIV risk for HIV-negative individuals who take the pills everyday as directed. If a daily dose is missed, the level of HIV protection may decrease. For people who have taken seven PrEP pills per week, their estimated level of protection is 99%.
Despite these encouraging statistics, fewer women are taking PrEP, while those who initiate are likely to abandon this life-saving programme.
The most common reasons given for not taking PrEP were the perception that one was at high risk of HIV.
A study among women and men of all ages in Zimbabwe also found that women felt that they needed to consult with their partners first.
This project, sponsored by the Clinton HIV and Aids Initiative, offered PrEP at two pilot HIV testing centres, in a Family Planning Council clinic in the capital, Harare and the other in a youth centre in Chimanimani, a rural district near the Mozambican border.
These centres offered PrEP to every person taking an HIV test there (the Harare centre performs 300 a month and there are 175 a month at the Chimanimani centre), but only got a very small proportion agreeing to try it. Between January and May this year, 151 out of 3158 people started PrEP (4.8%: it was 9% at Chimanimani and 2.7% in Harare).
According to researchers, one woman aged 20 said: “What made me decline PrEP is that my husband would accuse me of having another sexual partner while he is away. So I think it is best for me to ask for the permission to take PrEP and if he agrees, then I will come.”
Other reasons for declining PrEP were that people were happy with condoms and were afraid of side-effects. However, as in the Kenyan study, PrEP was seized on by those with the highest risk indicators, such as women in abusive relationships: “I will take PrEP for life because I can no longer be infected by HIV. To add on, my husband was cruel as he could tear the condoms sometimes and he could pretend as if it had burst. I was really happy that I now have a backup,” said one such woman.
Or another whose husband’s unfaithfulness had resulted in her being infected with STIs: “I saw a lot of messages from different girls on my husband’s phone and I spoke to him about it, but I was surprised to be diagnosed of an STI twice, so I realised that I was talking to myself. I, therefore, decided to take PrEP.”
In short people, including young women, will take PrEP if they are in situations of imminent risk, especially if they feel they have no control over that risk.
A second factor was that the most frequent reason given for not continuing with PrEP was the experience of side-effects during the first month.
Diantha Pillay of South Africa’s Wits Reproductive Health and HIV Institute presented in-depth qualitative findings from Female Sex Workers (FSW) and Men who have Sex with Men (MSM) who took PrEP up till June 2017 at nine of the 16 PrEP implementation sites that were open at the time.
Among these past users, 83% said side-effects had affected their daily lives and even among current users, 59% said they had experienced them and 31% said they affected their daily lives.
Diantha Pillay said although a majority of PrEP users recalled being told about side-effects in pre-PrEP counselling sessions, only a minority received advice on how to manage those side-effects.
In Kenya, Jordan Kyongo of the Nairobi-based HIV organisation LVCT Health concurred that side-effects were one of the most common reasons for discontinuing PrEP.
A 2015-2017 PrEP demonstration project was based in the cities of Kisumu and Homa Bay on Lake Victoria and in the capital Nairobi. It enrolled 796 FSWs, 597 MSM and 723 general-population of young women.
Side-effects were the most commonly cited reason for dropping out. PrEP takers complained of “‘nausea’, ‘headaches’, ‘constant dizziness’, ‘running stomach’, ‘darkening of the skin’, ‘weight gain’ and ‘loss of appetite’”.
“I took the bottle halfway due to the side effects,” said one young woman.
Real side-effects reinforced and imaginary ones might be induced by community beliefs about PrEP, such as it causing impotence or sterility or being a population-control measure.
The second most common reason for PrEP drop-out was, one woman said: “When I informed my husband, he refused and told me that he should not find me using it. So I started taking the drug in secrecy. When he came to know about it, when he saw that bottle, he beat me to an extent of breaking my nose.” Practical reasons, such as transport difficulties, were also often cited.
Reasons for continuing included wanting to maintain a positive relationship with the healthcare worker and a perception that one could not rely on people’s declaration of their HIV status: one FSW said: “Because of having multiple partners and having unprotected sex, you do not know their status; like even those four, I only knew the status of one person and they do not want to come to the clinic to test”.
Kyongo, who described himself as “a PrEP researcher and advocate”, said it was important to take account of the context of PrEP use and to keep in mind that PrEP was a choice: “The end game is HIV prevention, not PrEP use,” he said.
He continued: “The right people on PrEP are the people who want to be on it. If I want to be on PrEP, let me. If I want to take it for a month then stop, let me; from the point of the user, it is not like taking medicine, it is much more like using a condom. And if I don’t want to take PrEP, don’t tell me I should because I’m ‘at risk’.”