Life after PrEP: How one magical pill saved our lives and our marriage

One cold October morning in 2008, just two days before Kenyatta Day, Joshua Otieno woke up and took a cold shower as was his custom. It was clinic day for his pregnant wife, and seeing as she had one foot in the grave (or so he thought), the least he could do was accompany her for checkups whenever they fell due.

As they set out for the hospital, a van pulled up into their compound, and researchers from the Kenya Medical Research Institute (KEMRI) jumped out.

They were looking for discordant couples like Joshua and his wife Judith Auma, to enroll in a study to test a new anti-HIV drug (Truvada) that would protect people at high risk from catching the virus.

They called it pre-exposure prophylaxis or PrEP, in short. The HIV-positive partner would be put on life-prolonging and health-boosting antiretroviral drugs, while the HIV-negative partner would be put on PrEP.

LIFELINE

The researchers had Joshua’s and Auma’s attention. They had just handed the couple a lifeline; a reason to revive the dying embers of their strained relationship.

The couple’s problems had started earlier that year, soon after Auma learnt that she was expecting their third bundle of joy. Suddenly, Auma was taken ill, and thinking that something was amiss with the pregnancy, she headed to the antenatal clinic, where a nurse advised her to take an HIV test to rule out the virus as the cause of her ailment.

Filled with dread and uncertainty, Auma hesitated, then she gave in. Those days HIV was like a death sentence, and a HIV diagnosis was the last thing Auma wanted, but she needed to put her fears aside if she was to find out what was ailing her and get it treated. Five minutes after taking the test, Auma learnt that she was HIV-positive. Finding it hard to believe, she sought a second opinion at a different clinic, where tests showed she was still HIV-positive.

The news was overwhelming. How would she tell her husband who had a tendency to become violent when drunk (and he drunk every day, with few and far between moments of sobriety)? A community health worker offered to help, and persuaded Auma’s husband, Joshua, to accompany his wife for an HIV test.

His returned negative, while hers returned positive a third time. They were a discordant couple. Blood drained from Joshua’s face, while tears flowed freely from his eyes. He was shocked, angry, shattered.

“Where do we go from here?” he asked himself. Their five-year marriage was under threat.

“He told me to go to the person who infected me and threatened to kill me. My status became the subject of his drunken songs in drinking dens. It was a terrible time,” Auma recalls.

When her husband threw her out, Auma sought help from a friend who was a nurse, and she came and counselled the couple, urging them to accommodate each other and telling them they could live together healthily and happily just like any other couple … just like old times before HIV came into the picture.

“In those days HIV was a terrible disease, a punishment for promiscuous men and women. I couldn’t get past the thought that my wife might have betrayed our love and trust. How else could she be positive while I was negative?” Joshua chimes in.

SPECIAL DIET

Auma needed a special diet to stay healthy, and support to adhere to her drugs. She was put on Septrin (cotrimoxazole), an antibiotic used to prevent opportunistic infections in HIV-positive patients with low CD4 cell counts, as was the standard back then, before it became the practice to put everyone who was diagnosed with HIV on antiretroviral drugs. Auma’s CD4 cell count was below 200, while the normal range in a healthy person is 500 to 1,500 per cubic millilitre of blood. Auma was also put on multivitamins.

With a baby on the way, Joshua decided to stay. They could still get intimate if they wanted, but they had to use a condom. But intimacy was the last thing on Joshua’s mind. All he saw was a shroud of death hanging over his wife. The least he could do was see to it that she met her maker as peacefully as she could.

Then came the researchers with two magic drugs. One was an experimental drug that could keep the uninfected partner from HIV infection, and the other, a cocktail the researchers called anti-retroviral drugs or ARVs that would help restore the health and prolong the life of the infected partner. The couple embraced the idea. What did they have to lose? The worst that could happen had already happened.

Auma went off Septrin and was put on ARVs while her husband was put on Truvada. The researchers said they could get intimate, but they had to use a condom. Joshua got a batch of PrEP drugs every three months and took them for two-and-a-half years, before going off the drugs in 2011. Auma continued taking her ARVs until she achieved viral suppression, which meant that chances of transmitting the virus were minimal. She still takes her drugs faithfully and now, 10 years later, they no longer use a condom.

“I have not been on PrEP for seven years. We are not using a condom, and I have not been infected,” says Joshua. The couple now has six children, all HIV-negative.

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Michael Okumu lay bedridden on a hospital bed, where his wife, Jenipher, catered to him. Doctors said Michael was HIV-positive, and though Jenipher was yet to take an HIV test, she had decided she was already positive. How could she not be, when her husband was? He must have infected her … but the thought of taking a confirmatory test was more than she could bear. It took nurses two agonising months to convince her to get tested. She tested negative.

The mother of two considered abandoning her husband at the hospital. There were so many unanswered questions, coupled with a feeling of betrayal.

“Things had changed. There was no way I was going to live with, trust and love my husband like before,” says Jenipher.

After three months, Michael was put on Septrin and he recovered. Counsellors talked to Jenipher about accepting her husband and trained her to care for the patient. She decided to stay on condition that their sex life be relegated to the ash heap of history.

“I wanted nothing to do with sex. We lived like brother and sister and I moved out of our bedroom to sleep in the children’s bedroom. I couldn’t get past the betrayal and the risks.”

Two years into their new way of life, the couple happened to go to Lumumba Health Centre in Kisumu (now the Lumumba Sub-County Hospital), where the KEMRI PrEP study was taking place. Jenipher was put on Truvada, and Michael on ARVs.

She made sure that Michael took his drugs without fail and ate healthy, and the Truvada gave her peace of mind. Their sex life returned to normal.

The couple admits that they were not using a condom, though experts advocate for the consistent and correct use of condoms as part of infection prevention measures for discordant couples. Jenipher has since given birth to the couple’s third child, who is HIV-negative. And for six years now, Jenipher has not been taking Truvada. She tests herself after every three months and she has not been infected.

“Discordancy makes a relationship even more difficult. You grapple with accepting things as they now are and struggle with coming to a mutual understanding … But Truvada saved the day. It prevents possible infection. It keeps the fire burning after HIV,” says Joshua, a sly smile dancing on the corners of his lips.

With Truvada in the picture, Joshua vowed to love his wife and shield her from the stigma they faced as a discordant couple.

“People pushed me to chase my wife. They said, and still say, a lot of things, some of which are depressing, but I have learnt to ignore them and to concentrate on our lives as man and wife,” says Joshua, who has since joined a self-help group for discordant couples.

The group supports discordant couples through continuous education on HIV, treatment adherence and psychosocial support. This has greatly improved relationships between spouses, enhanced adherence to treatment and promoted the economic well-being of members.

“I would have married another wife, but with adherence to medication, we have managed to get through,” says Joshua.

Pre-exposure prophylaxis (PrEP), has been an integral part of keeping discordant couples together. To achieve optimal levels of protection among discordant couples, the drug must be taken daily. The principle of PrEP is similar to that of antimalarial tablets used to prevent malaria in foreigners travelling to tropical countries. Somebody who does not have HIV takes enough PrEP to maintain high levels of the drugs in their bloodstream, genital tract and rectum before any exposure to HIV. If exposure occurs, the drug stops the virus from entering cells and replicating. This prevents HIV from establishing itself and the person remains HIV-negative.

“By having this medication in the bloodstream, HIV may be unable to establish infection,” says Dr Elizabeth Irungu, the country director of the Partners Scale-up Project, which focuses on discordant couples.

FREE OF CHARGE

PrEP is offered free of charge in all public hospitals while in private hospitals, brand name drugs will set you back Sh3,700, while generic equivalents cost Sh412. The initiative, which is spearheaded by the government in collaboration with partner organisations, has taken years of clinical work, clinical trials and more than 50 demonstration projects in Kenya and around the world to get to the point where PrEP efficacy was proven.

The studies targeted young women and girls, discordant couples, people who inject drugs, sex workers and men who have sex with men. Several studies have shown that with strict daily adherence, PrEP is over 96 per cent effective at preventing HIV infection.

“Almost half of all new HIV infections occur in stable HIV-discordant partnerships. In Kenya, there are more than 260, 000 such couples, according to figures from the Kenya Aids Indicator Survey of 2012. The negative person is always at risk. That’s why we focused on that group,” says Dr Irungu.

PrEP is also recommended for people whose partners work in places that expose them to high risk of infection, those with a history of sexually transmitted infections, and people who consistently use post-exposure prophylaxis (PEP), which are HIV prevention drugs prescribed after exposure to the virus.

Dr Irungu says that though the drug is very effective, uptake is still very low because most people are not aware that the drug exists and many healthcare workers are yet to be trained on its use.

“This drug is helping discordant couples who want to have babies, do so without worrying about infection. A pill a day works wonders,” says Dr Irungu.

The Ministry of Health is expected to release comprehensive figures on the usage and impact of PrEP in the country later, but estimates from the National Aids and STI and Control Programme (Nascop) show that about 9,800 people at risk of HIV infection have been put on PrEP to date. Kenya reported 77,600 new HIV infections in 2015. Of these, more than half were in adolescents and young people aged 15 to 24 years. To lower these numbers, the government intends to put more Kenyans at high risk of HIV infection on PrEP.

Dr Irungu, however, warns that PrEP is not a magic bullet, and must be combined with safe sex practices like the use of condoms. Moreover, after a month of PrEP one requires further screening to check levels of the drug in their blood and to check if they contracted HIV while on the drug.

“We always preach use of condoms, with a break when the couple wants to conceive. Thanks to PrEP, the risk during that time of trying for a baby is even lower,” she says.

Dr Nelly Mugo, the principal research scientist at KEMRI and the principal researcher on the PrEP efficacy trials conducted in Kenya, raises concerns that people at risk of HIV infection shy away from taking PrEP.

One of the main complaints is that its blue colour is similar to that of Viagra or drugs for mental health problems, while another complaint is that the pills make a rattling sound when being taken out of the container.

“Most people have complained that it looks like an antiretroviral drug (because of its size),” says Dr Mugo, adding that all these perceptions affect drug adherence for those who need protection the most.

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Pre-exposure prophylaxis a lifeline for populations that are most at risk

WINNIE ATIENO

[email protected]

When the condom burst while she was having sexual intercourse with a client, Mary* was at wits end, fearing that she might have been infected with HIV.

A day after the incident, the 39-year-old sex worker calmed her nerves and went to a public hospital in Mombasa to take a HIV test.

“Luckily, I tested negative. These are the risks we face every day in our line of work. My only worry is that if I get infected, I could die, and my children would be left alone suffering,” says the mother of four.

Last year, Mary was enrolled in a programme by the International Centre for Reproductive Health, where she learnt about safe sex and a drug that would reduce the risk of being infected with HIV during the course of her work.

They called it Pre-exposure prophylaxis, or simply PrEP. She was among 2,000 sex workers, men who have sex with men, sexual minorities (lesbians, gays, and transgender and intersex populations) who were introduced to PrEP.

They were told it was a new measure, an everyday pill in addition to condoms, that would lower their risk of HIV infection. They’d have to keep using condoms to prevent other sexually transmitted infections and unplanned pregnancies.

PrEP is taken before sex by people who are HIV-negative to prevent infection if they have sexual intercourse with someone who is HIV-positive.

The drug is available at drop-in centres for sex workers as well as in public and private health facilities at the Coast.

“Condoms bursting are a real issue for us, but PrEP has helped allay the fears. I am no longer worried. I know I am protected by PrEP,” says another sex worker who has used the anti-HIV drug for a month.

“It is a good drug. Apart from a slight headache and vomiting which subdues over time, there are no serious side effects,” adds Kevin* a male sex worker has been on PrEP for five months.

The targeted groups, also referred to as key populations, have the highest new HIV infections in Mombasa County, which has a particularly high number of key populations, driven by sex tourism, drug abuse and other factors.

Julius Koome, the National Aids Control Council Coordinator for the Coast Region, says that four people get infected with HIV every day in Mombasa.

Of these, two are youth aged 18 to 24 years. Moreover, at least two people die every day in the county as a result of complications arising from HIV infection. This has informed campaigns to reduce new infections among those who are most at risk.

 “PrEP is not only for key populations, but for anyone who thinks or feels that he or she is at risk of being infected, especially when you do not know your partner’s HIV status.

“Even married people can use the drug. The biggest challenge is that people have not embraced the drug 100 per cent,” says Mr Koome.

Dr Griffins Manguro from the International Centre for Reproductive Health says that the organisation started giving out PrEP in February 2017.

“The LGBTI community has embraced it more than other people. Uptake among the public is not high.

“Sex workers are more informed about safe sex, so their uptake is much higher. We are giving it to more than 2,000 sex workers,” says Dr Manguro.

The sex workers get a 30-day dose, after which they are tested for HIV, and if the result is negative, they get a 30-day refill. Those who default are followed up.

*Names have been changed

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JOURNEY TO PREP

2007 - iPREx study becomes the first to offer PrEP to 2,500 men who have sex with men in six countries on four continents. Those who took PrEP seven days a week as recommended had a 99 per cent reduction in HIV infection risk.

2011 - Partners PrEP trial recruits 4,758 discordant heterosexual couples in Kenya and Uganda. Risk of HIV infection is reduced by 62 per cent in those who took tenofovir and 73 per cent in those who took Truvada.

2015 - World Health Organisation releases new guidelines recommending PrEP for people at substantial risk of HIV infection as part of HIV prevention.

2017 - Kenya rolls out PrEP and HIV self-testing to the general population.