Beating HIV through family, mentorship

Kennedy Okuku

Mr Kennedy Okuku with his wife Pamela Adhiambo at their home in Mbita sub-county, Homa Bay County. Together with one of their children, they are enrolled under the Pama Care programme.

Photo credit: Angela Oketch | Nation Media Group

In counties bordering Lake Victoria, where elderly men see it as a weakness to have their wives accompany them to events, health care systems are working hard to change perceptions.

Homa Bay is one of these counties. Slowly catching on in the county is an initiative where the man, his wife and children are encouraged to work as a team in seeking HIV medication. This has helped to improve HIV statistics in the region.

Listed as one of the 10 counties that contribute to high HIV prevalence in the country and doing dismally to prevent transmission from pregnant women to their unborn children, the county has a problem on its hands.

Homa Bay Referral Hospital serves thousands of patients and hundreds of pregnant HIV-positive women. Every day, they deal with denial, stigma and poverty. Some patients disappear as soon as they find out they have the virus, making it difficult to initiate measures to prevent transmission.

It is against this background that the “Pama Care (Papa Mama Care)” concept was born five years ago to address barriers to adherence to achieve viral suppression in children and adults.

While the model is new in Homa Bay, using patients to stem the tide of HIV infection has been used in other counties including Siaya, Migori, Kwale and Kisumu, where the county governments and partners pay a monthly stipend to patients who reach out to those who have a hard time accepting their status.

Such programmes work as public-private partnerships, where private companies give financial incentives and the county gives the skills and the technical assistance.

Tested positive

Kennedy Okuku and his family are some of the beneficiaries of such programmes. After keeping his status secret for two years, his wife got to know about it after she tested positive.

When he knew he was infected with HIV, his first impulse was to keep that information from his wife because he was convinced she would reject him. He was afraid of being judged, being accused of infecting his partner and the consequences.

Two years of keeping the secret from his wife, who was already showing signs of infection, took a toll on him. But he was still not ready to let the secret out.

The 53-year-old fisherman spends most of his time in the lake. He can go away for up to three months trying to make ends meet. In 2012, he noticed that he was not as energetic as he used to be, so he minimised the number of times he went fishing. He coughed a lot and drastically lost weight. He went to hospital, got tested and confirmed he was HIV positive.

In September 2012, he was placed on antiretroviral therapy. He went back home and did not share the information with his wife Pamela Adhimabo. If she knows the truth, will she divorce me? Who would take care of the children? These were some of the questions that he had.

One day, his wife stumbled upon his medication, hidden in one of his jackets. She had never seen the drugs before, so she could not tell what they were for. When she asked Kennedy about them, he lied that he was diagnosed with pneumonia and that he had to take the drugs every night before going to bed. What surprised her was that her husband would change the hiding spot regularly.

In September 2014, the secret finally came out.

Pamela got pregnant with their second-last child. Following the long-established policy that every pregnant woman gets tested for HIV, the test turned out positive.

“This came as a shocker to me. I did not believe that for 20 years of marriage, in which I had been faithful to my husband, all I could get was an infection. I was so angry and did not want anything to do with him,” says Pamela, a mother of four.

When she went back home that evening, she cooked and together they ate as a family. Once dinner was done, she invited her husband into their bedroom for a conversation. She remembers telling him: “You have to tell me where the disease came from. Of course it’s not from me.”

Kennedy remained calm

“He sat and looked at me. I could only imagine what he was thinking or feeling at that moment. I expected him to be mad and overreact but surprisingly, the exact opposite happened,” says Pamela.

Kennedy remained calm, staring at his phone.

“I appreciate you for sharing this with me,” he said and went ahead to reveal that he had been on HIV drugs for two years, but he had not known how to reveal this to her.

Pamela did not want to hear his explanation, and that was the beginning of their problems.

For months, Pamela lived in denial before she eventually accepted to start taking her drugs.

Homa Bay HIV

E Opiyo at their home in Rongo on March 9, 2021.

Photo credit: Tonny Omondi | Nation Media Group

“I did this for the sake of the baby I was carrying. I was willing to die,” she says.

After months, she delivered a bouncing baby girl, Zainna Okuku, through a caesarean section. Unfortunately, she had the virus since Pamela had started taking medication late. The baby was immediately placed on drugs.

“This took a toll on me. The fact that my child was going to take her drugs for life traumatised me, and at times I would not take or give my child the drugs,” she says.

For Zainna, the blame game between his parents worsened her condition. For missing her medication, Zainna’s viral load rose to 47,900 copies from the initial 20,000 copies, six months into taking the drugs – anything above 1,000 copies is considered dangerous. The mother was not doing any better.

Every member of the family had a different timing of taking their drugs. Kennedy was taking at 8pm, thirty minutes after his daughter while Pamela was taking hers at 9pm. They were also attending their clinics in different hospitals.

She had started a kiosk business at the nearby local market so her daughter’s time for taking the drug would always find her at the market. She would come and give her the drugs later, which interfered with the strength of the drug.

On her part, since she wanted to die, she wanted nothing to do with the drugs.

After noticing that Pamela and Zainna were not doing well, alarmed health experts at Mbita sub-county hospital went to visit the family to understand their challenges.

Ms Electrine Osewe, an adherence counsellor with the Ministry of Health, said they are majorly concerned with children, though in Pamela’s case, since she is the primary caregiver, they had to tackle the root cause of the problem.

“In Pamela’s case, she felt that the husband had betrayed the trust she had in him and that he was responsible for their problem. But we had to counsel her to understand that she had to accept her condition first for her to give their daughter the drugs and take hers religiously,” she says.

Marit Ajuang

Ajwang, 12, and her  mother, who are from Rusinga Island, are also enrolled in the Pama Care programme.

Photo credit: Angela Oketch | Nation Media Group

It was not easy initially, but after several visits and counselling sessions, Pamela opened up and started taking her drugs. But there was still an adherence problem with Zainna.

Though the viral loads for mother and daughter were reducing, it was not at the expected pace. In 2017, the viral loads reduced to around 1,200 copies in both, which was still high.

However, the problem was not with Kennedy’s family only. Many patients, more so the mothers and children, had adherence issues. So health care experts had to intervene.

This is what led to the birth of the Pama Care concept by the Elizabeth Glaser Paediatric AIDS Foundation (EGPAF) to address barriers to adherence faced by families.

“Having witnessed low adherence rates both in guardians and children, we really wanted to understand what they were going through. We wanted to walk the journey with them,” says Robert Samora Okari, EGPAF Technical Advisor, Paediatric and Adolescents.

“This is where we bring all the family members together, we give the same timing for taking their drugs and same clinic visit day so that if there is a problem, the guidance and counselling is offered to them as a family. This also minimises travel to clinical,” he says.

Homa Bay HIV

A young girl who is undergoing third line HIV treatment. 

Photo credit: Tonny Omondi | Nation Media Group

The programme, which was started in 2017 when Homa Bay’s viral load suppression stood at 74 per cent, gave a holistic approach by looking at the disclosure status of the children, factors inhibiting viral suppression and how to improve the numbers. Integrating Pama Care with other measures over the last five years, the viral suppression load of the county has improved to almost 90 per cent.

Out of the 139,000 HIV-positive children in Kenya, 93 per cent are on treatment. The viral suppression rate varies across regions, with Homa Bay being the best, six percentage points above the national average of 84 per cent, according to the National AIDS and STI Control Programme.

Counties in arid and semi-arid areas have a much lower viral load suppression rate due to a myriad of challenges.

The programme, which targets children between zero and nine years of age has since enrolled 2,532 children-care giver pairs.

Out of this number (2,532), 2,305 (91 per cent) have both caregivers and children living with HIV, and about 2,064 (90 per cent) have both the child and the caregiver suppressed.

Only among 123 pairs (5 per cent) had the caregiver achieved viral suppression while the child had not, and in 78 pairs (3 per cent) both were not suppressed.

“The component of suppression involves a lot, including looking at the drugs they are taking (whether they are developing resistance), and challenges faced by the caregivers that may impede on adherence,” says Mr Samora. “For the children not to be suppressed, it has to do with socioeconomic issues, which take a long time to bring the involved parties on board.”

Immediately after the programme was launched, Pamela, her daughter and husband enrolled. They requested to be given the same timing so that they could be taking their drugs and attending their clinics together.

“We started going to the same clinic, picking drugs at the same time. When I am busy, my husband picks for us. We all take our drugs at exactly 8pm. When my husband is out, I must remind him to carry enough drugs. When he is travelling, since he is the one who set the alarm timing for the drugs, he must call and remind us to take our drugs,” Pamela says.

This was in March 2019 and by September the same year Zainna’s viral load was at 00 – undetectable. The seven-year-old is still on her first line medicine, which means she has not developed resistance to any of the drugs.

The three are all virally suppressed – a patient is considered virally suppressed when the viral copies in the body are less than 1,000, and considered stable if it is less than 1,000 for more than 12 months.

According to the Centres for Disease Control and Prevention, if taken as prescribed, antiretroviral drugs (ARVs) reduce the amount of HIV in the body (viral load) to a very low level, which keeps the immune system working and prevents illnesses. ARVs can even make the viral load so low that a viral load test can’t detect any.

Lowest viral suppression

A look at the preliminary Kenya Population-based HIV Impact Assessment (Kenphia) 2018 report shows that children have the lowest viral suppression at 48 per cent against a national average among adults of 72 per cent. This means in every 10 children ages zero to 14 years, only four have a suppressed viral load, raising concerns that hundreds could be dying needlessly.

For Whitney Vallerie, 8, both her parents are HIV positive, but the fact that she was not suppressing worried the health experts.

“They expected that when we are taking drugs, we are also giving her the drug, unfortunately, when she was being given the drugs, given that they were bitter, she was vomiting and the mother was not giving her another dose. This affected her adherence,” says the father, Maurice Okere, from Ndhiwa sub-county.

She was placed on ARVs in May 2019 when her viral load was 4,345 copies and after five months, the load increased to 11,800 copies. She failed the first line and was switched to the second line, but still there was no change. Two months later, the viral load shot to 29,700 copies. They had to act or lose the baby.

“This got us worried and we had to come in and understand where the problem was. We realised that the father was always busy and the mother did not understand the importance of timing and ensuring the child diligently took drugs,” says Mr Okari.

“We made a visit to their home and after counselling, they were enrolled into the Pama Care programme and the father accepted to be the immediate care giver. We kept tracking the child and there was a huge improvement,” he says

In June this year, the virus could not be detected.

Highlighting the factors that have made it hard to suppress children’s viral load, Dr Justine Odionyi, EGPAF’s technical director, named three: HIV, drugs and patient factors.

Dr Odionyi says psychosocial support groups for children and caregivers on paediatric HIV services have led to the good results.

For families under care, selecting one clinic day on which all members attend ensures all issues being they face are addressed, thus improving adherence to treatment.

Pama Care is not the only way through which counties are increasing adherence and therefore viral load suppression.

HIV-positive pregnant women

In 2018, the Kwale County government was worried by the numbers of HIV-positive pregnant women who had defaulted on treatment, either because of socio-economic aspects or differences with the couples.

This is what led to the birth of the “mentor mothers” project in 2019 to prevent mother-to-child transmission of the virus.

The model improves the health outcomes of mothers and infants and saves money that would have been spent on treatment.

At the age of 28, Elizabeth Akinyi * applied to be one of the mentors, she did not want any mother to go through what she had gone through.

“I realised that I was HIV-positive and this happened after I had given birth to my son. Had I known my status earlier, I would have followed the measures, my son would not be taking the drugs now,” she says.

She is one of the 25 mentor mothers in the county tasked to trace and persuade HIV-positive women to get the treatment that will protect their babies from infection.

She was given about 300 files of mothers who disappeared after learning they were HIV-positive. She traces defaulters, counsels and walks them through what they need to do from antenatal care until delivery. To convince the women to get on treatment, she shares her own story, which often does the trick.

Through the training from the county government and a monthly stipend of Sh7,500, the mentors walk door to door visiting the mothers and advising discordant couples (where one partner is HIV-negative and the other is positive) on how to stay healthy.

However, the work is not without challenges as some women give false contact information, making it hard to trace them. To get around this, she reaches out to community health volunteers, who are more knowledgeable about the people who live in various villages.

With the introduction of the programme, they are able to retain 93 per cent of pregnant women who test HIV-positive and get them on treatment, a 53 per cent increase.

This has since been implemented by other counties that have seen the impact of this approach in lowering HIV transmission to new-borns.

[email protected]        *Not her real name

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