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My 22 years as an HIV patient, peer counsellor

When his longtime sex partner passed on, he knew for sure that she had died of the dreaded HIV/AIDS. Even so, he kept on living in denial in the hope that he may not have contracted the disease.

Fast forward, his thoughts were focused on his lastborn daughter, praying against all odds that he was living a ‘dream’ that she could ultimately become a victim.

This was the chilling admission by 52-year-old John Opiyo (name changed), who opened up and shared his trials and tribulations of living with HIV for 22 years.

Sitting under a patchy, blue sky stretching over the Lakeside City of Kisumu, Opiyo settled down for an exclusive lunchtime interview with KNA at the serene Uhuru Park, Kisumu, opposite City Hall recently.

Clad in a brown T-shirt and a black trouser, Opiyo’s face lightened-up and continued, “definitely after the death of my lover, I concluded that one plus one is equal to two, although I had not gone for tests and was naive about the infectious virus. I decided to stick to my family and resisted the persistent urge to get another lover,” he says.

“Presumably, I had thought that the virus was not meant for people like us. For so many years, I ignored the idea of being tested to know my HIV status and continued with my normal way of life as usual. I got married in 1993, and my wife is a devoted Christian,’’ Opiyo, a former Jua Kali mechanic-turned-HIV peer counsellor, revealed as the birds hovered, chirped away, and perched on the nearby trees.

Four years later, when her wife got pregnant and safely delivered their third-born son, in his mind, Opiyo confidently assumed that he was HIV-negative as well.

In 2007, he recounts, things turned for the worse when his spouse was pregnant and seriously became ill.

Luckily, they welcomed their second and lastborn daughter into the family, consisting of two boys and a girl. More worryingly for him, the newborn also got ill on and off quite often.

“This prompted us to do an actual test and know our health status at the then Kisumu District Hospital (now the County Referral). My wife was happy with the idea, as she was always afraid of directly telling me to do so.” Opiyo, the bespectacled man standing 5’8 tall with a dark complexion said with regret.

During those days, he revealed that the doctor drained a lot of blood from the child and took it to the laboratory for a two-hour test, unlike nowadays, where they just prick the finger, test and get instant results.

To his surprise, after reading the results from a document placed in an envelope, their five-month-old daughter tested positive and was recommended to be placed on Antiretroviral (ARV) drugs immediately.

“It was the longest evening in my life, and we were told that we had delayed the child, but she could be placed on drugs for her to survive. Given that it was late in the evening, we were advised to visit a health facility near our place of residence. But, up to now, I am very annoyed because we were never counselled after the results,’’ he remarked, with a tinge of pain.

On visiting Joel Omino Dispensary in Nyalenda, he got a second shock, when his wife revealed to the nurses that she knew she was positive, when she used to attend clinics and was afraid to inform her husband.

“She attempted twice to inform me that the doctors wanted to see both of us, but I often brushed it aside. The nurses told us that early disclosure from my wife would have saved the life of our daughter, who could have been placed on medications and the child would have turned out negative,’’ Opiyo narrated.

He added that his wife and daughter were immediately put on ARVs, but Opiyo himself was given septrin.

“One day in 2012, I bumped into my third-born’s Clinic Card, and that was when I realised that he was on Pre-Exposure Prophylaxis (PrEP), to avoid contracting the virus. Presumably, my wife stopped taking drugs, when she didn’t see me getting ill,’’ he pointed out.

Opiyo explained that, having conceived and stopped taking drugs, the wife’s pregnancy affected her immunity, and her life started deteriorating. Unfortunately, he continued, the wife was suffering from full-blown AIDS after her CD4 count was less than 40 per cent and the child’s CD4 was less than 25 percent respectively.

At the time, both of them developed opportunistic infections; Tuberculosis, pneumonia and an outbreak of skin herpes. Even so, Opiyo was still determined to confirm his true status and so offered himself for HIV testing three times.

These, however, gave inconclusive results and was referred to Liverpool Voluntary Care Training (LVCT), where he was diagnosed with HIV with a CD4 level of over 600.

Our research on the WebMD website confirmed that a normal CD4 count ranges from 500 – 1,400 cells per cubic millimeter of blood and it goes down over time if one doesn’t take ARVs regimen as instructed.

At levels below 200 cells per cubic millimeter, you are more likely to get a wide variety of Opportunistic Infections (OIs), many of which can be deadly.

Opiyo says that in the past, an HIV-positive person was given ARVs when their CD4 levels dropped to below 350.

He beamed with joy and satisfaction that ever since the trio have continued taking the HIV drugs to the extent that the CD4 was now undetectable.

As the world continues to grapple with the HIV scourge since its inception, the WHO reports that 85.6 million (65–113 million), have been infected with the virus.

About 40.4 million (32.9–51.3 million) have died of HIV, while globally, approximately 39 million (33.1–45.7 million), were living with HIV in 2022.

This translates to 37.5 million adults, 1.5 million children (below 15 years old), and 53 per cent accounted for women and girls, during the same period.

In Kenya, the National Syndemic Diseases Control Council’s (NSDCC), latest data indicates that out of the 17,680 new infections in Kenya, 41 per cent are aged 25 – 34. Over a decade, NSDCC observed a downward trajectory of 78 per cent in new infections, rising from 101,448 cases (2013) to 22,154 (2022).

Homabay leads the pack with a 15.2 per cent increase, while Kisumu, Siaya, Migori, Mombasa and Kisii registered (14.5, 13.2, 9.7, 4.6, 4.4 per cent) respectively.

The 2023 World AIDS Day theme of ‘Let Communities Lead’ is an urgent call to action urging communities, to put renewed vigour in the fight against AIDS.

Consequently, this will speed-up the attainment of the 95.95.95 HIV treatment target and put to an end AIDS, as a public health menace in line with the 2030 Sustainable Development Agenda.

However, according to Opiyo, the 95.95.95 WHO set goals are aimed at achieving 95 per cent of People Living with HIV, knowing their status, 95 per cent of diagnosed individuals put on Antiretroviral Therapy (ART), and 95 per cent of those on ART achieving Viral Suppression by 2025.

In 1987 when Lingala Rhumba Maestro, Franco Luambo Luanzo Makiadi, belted his timeless song Attention Na Sida, his simple message was telling people to repent or perish from the deadly virus.

After establishing his HIV status, Opiyo quit his job as a mechanic, took a cue from Franco and became one of the most passionate peer counsellors.

He developed a positive mind and joined the LVCT facility-led Ushirika Ni Mwema Support Group, where he also takes his drugs in Kisumu.

“I was concerned about the future of my family but remained naïve about issues relating to HIV. I became overzealous and determined to know more about it. During our group discussions, we shared our personal experiences, encouraged and got insightful tips on how to live with the virus from the health experts,’’ he said.

Opiyo added that he came to realize that he was not the only one living with the virus. Of great significance, the peer counsellor who resides in Nyalenda Informal settlement, revealed that the group was specifically for HIV-positive couples.

Having read numerous HIV-related articles and attended training sessions as a volunteer at the LVCT, he earned some stipends, which kept him going and through concerted savings enrolled to become an Adherence Counsellor in 2008.

Armed with new ideas to fight the menace, he formed an online support group known as ‘Pillars of Hope’ whose membership is at 100.

They deal mostly with advocacy and awareness creation engage in socio-economic activities like Table Banking and merry- Go- Rounds and help each other celebrate their birthdays.

Opiyo avers that they want to give HIV a human face, so that people know that it’s something normal like any other disease and not a death sentence, as many have come to believe. He encourages those who have high viral loads, to have it suppressed.

“At one point, we had a member who had Two million copies of the Viral Load, which was quite extreme. After enlisting her as our member, we encouraged and gave her vital survival tips. The good news is that the load now stands at 1,000, as we highly hope that the next test will result in zero,’’ he reassured.

Similarly, the registered organization has a monthly welfare contribution of Sh 100, which goes to cater for emergency needs.

He confirmed that when a registered member dies, they contribute Sh 1,000, while a member’s child and sickness are pegged at Sh 200, respectively.

By January, 2024, the group has so far focused on turning it into a Community-Based Organization (CBO) to be able to source for financial support.

Emboldened by these success stories, they went further to create the HIV Positive Minglers Kenya (Facebook account) in 2014.

The online group, in his view, was formed to help those who are positive easily mingle and get partners for marriage since this was a major challenge for them.

“It’s a private platform strictly for only those who are living with HIV. Currently, we have 30,000 worldwide followers and counting,’’ Opiyo said with a broad smile, “and have since devolved it to the county levels to facilitate their interactions.

The noble initiative has borne so many fruits, seeing the First Minglers wedding conducted in 2016, partnerships soaring, and planning for Couples Dinner during festive seasons. One of the sticky challenges he worryingly observed is that, unlike before, there is a lack of thorough Treatment Literacy and Comprehensive Care before one is placed on ARV drugs.

“Nowadays, in most places, people are just being tested, and someone just dumps drugs in front of them. At that time, they were in a total emotional and physical wreck. Tough questions are still ringing in their minds, like; How did I get this virus? Why me? They need to be told professionally why they are supposed to take those drugs,’’ Opiyo lamented.

This, however, leads to so many defaulters who end up throwing away the drugs because they have not accepted their status. Other issues include the inability to register members for the National Health Insurance Fund (NHIF), and drugs stock out. “A patient is given drugs for only one week, asked to wait for a new supply or referred to another hospital to beg for drugs to save your life. In some circumstances, you have to travel long distances in search of it,’’ he decried the situation.

He advised that one’s liver condition should be tested before they are prescribed the 3-in-1 ARV drugs (Genetamovir, Lamivudine and Tenofovir), which can develop serious side effects in some people. Alternatively, Opiyo suggests that to address liver problems, one can be offered drugs such as Abacavir or Zidovudine, and the patient should go for annual liver condition tests.

Opiyo offered tangible insights on Undetectable Equals Untransmittable (U=U); “It indicates that you have taken drugs- up to a level whereby your viral load is zero or LDL (Low Levels Detectable), you can’t sexually transmit the virus to others. Like right now I am undetectable, and even a breastfeeding mother, can’t transmit it to her child.”

“HIV is not a moral issue, but a virus, for it can infect anyone as it doesn’t choose regardless of one’s class, race or religion. So, being positive is not the end of life, but it’s a beginning. Just accept the condition, there is no reverse gear and earnestly start taking your drugs, to lead a normal life. Join support groups as a motivation and share your experiences,’’ he appealed.

By Rolex Omondi and Joseph Ouma

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