Adolescent tales: This is how we defeated HIV

Contracting HIV has for many years been seen as a death sentence. Infected persons were isolated, regarded as adulterers and viewed as “walking corpses”.

More than three decades on, and in spite of the widespread awareness campaigns to demystify the disease, the virus still arouses dread among people, while myths abound.

But what happens when innocent children are infected with the virus at birth? Does it signal imminent death for them?

As the world celebrates those living with HIV this month, DN2 spoke with adolescents who were born positive. This remarkable quartet share the unique experience of living with the virus right from birth, and through the most critical stage in their lives: teenage.

FOUGHT STIGMA

They have fought off stigma to lead fairly normal lives. Their dreams to flourish in life remain intact. Nothing can stop them from living their lives to the full. Today, the disease that nearly ended their lives stands defeated.

It is almost outrageous to imagine that Relix Ouma suffers from any health condition. Cheer never departs his countenance. Ouma, 19, is a conversationalist with effortless humour, and exudes charm whenever he talks. Hands down, he is the epitome of teenage vitality.

The young man hails from a remote village in Ndhiwa Constituency, Homa Bay County. He contracted HIV at birth.

Ouma lost his father when he was two years old and together with his six siblings, they would be raised by their mother with the support of relatives.

 “My family told me that I was sick since I was child. But I did not discover that I was HIV positive until I was 15 years old,” a cheerful Ouma narrates.

His life though, has not always been marked by this admirable verve and sparkle. Instead, the discovery that he was sick at the height of his teenage put a damper on his life, making it a wretched existence of regret, helplessness and spite towards his parents.

His studies took a dramatic slump as his health declined steeply. Grinding poverty in his family made his circumstances even more agonising.

“I was depressed by my mother’s plight. She was taking care of me while providing for my six siblings alone. This broke my heart and my health condition grew worse,” recounts Ouma, who sat for his Kenya Certificate of Secondary Education (KCSE) examinations this year.

The young man was not at peace with himself, or anyone. But what made him more sick was his refusal to take drugs, dismissing them as a boring routine. He remained heedless even as his mother and doctors pleaded with him to take his drugs.

Meanwhile, the healthy diet that doctors had recommended for him was hard to come by. The family could sometimes go without food.

The disillusioned teenager escaped death by the barest margin before he realised that resistance would only drive him to an early grave.

“I have now accepted my health condition. I take my drugs voluntarily without failure. My condition, as you can see, has significantly improved,” he says with an air of satisfaction.

As a result, his viral load has remarkably dipped to undetectable levels. He is now a champion for positive living among people living with HIV in Ndhiwa.

As he awaits his KCSE results later this year, Ouma’s eyes are trained on a career in social work. A beneficiary of peer education himself, he desires to become an educator to teach others about HIV transmission and prevention — his newfound passion.

“As the firstborn in my family, I hope to secure a well-paying job to assist my siblings through their education. I also want to take care of my mother for the sacrifices she has made to raise me into a young healthy adult. Having defeated a disease that nearly ruined my life, there is nothing more to stop me,” he concludes.

CHAMPION IN EVERY SENSE

Melany Akoth from Kambija in Rongo is a champion in every sense of the word. When she tested positive for HIV in 2012, she was devastated. She felt her life had come a cropper.

Living her full life would be a long shot. Her studies were pointless, her dream of becoming a medical doctor disintegrated.

“I saw my younger brother die of AIDS. He could not survive the virus. Other children who I grew up with died too. I knew it was a matter of time before I, too, lost the battle,” she recalled.

Six years later, with a healthy lifestyle, intensive counselling, support from her parents and consistency in taking her anti-retroviral drugs, her fortunes have turned around.

“It is hard to imagine I have lived to see my 16th birthday. I hope to celebrate many more,” she says.

And rightly so. Her viral load has declined so much that today, what remains is a virtually suppressed virus that can neither be transmitted nor detected. Her optimism and vibrancy have been restored. For the Form Two student at St Mary’s Nyang’au Secondary School, nothing will stop her from attaining her dreams in life.

The story of Clinton Ochieng’ from Ratang’a village in Homa Bay County is as inspiring as it is heartbreaking. Like Ouma and Melany, the last-born child in a family of three children was infected with HIV at birth. His mother succumbed to HIV and AIDS in 2008. He was eight years.

He recounts: “I was introduced to drugs when I was very young. I did not know why I had to take drugs while other children were not taking them. My father later explained to me that I was HIV positive.”

This discovery instantly drove a wedge between the young boy and his father. That he was the only sick member of the family (his siblings are both negative) made him resent his father and late mother for infecting him with the virus “that made me different from my friends” owing to the routine of taking ARVs.

“I was so pained and I could not understand why my parents could do this to me. I started living in fear of death which I knew was imminent. The stigma in school made me very uncomfortable,” narrates the Form Three student at Got Kojowi Secondary School in Ndhiwa Sub County.

It took the stroke of self-acceptance and coming out to disclose his HIV status that the pendulum of his life changed its swing for the better.

“Through a programme run by Medecins Sans Frontieres (Doctors without Borders) I met other teenagers who had HIV and were also on drugs. We became friends and today, they are my biggest support system. We occasionally meet to talk about our health and goals in life,” Ochieng’ says.

“I don’t fear being labelled anymore because I openly talk about my status. I have defeated stigma. My dad and I are friends now. He has been very supportive through my journey,” he adds.

Today, Ochieng’ is an advocate of sexual responsibility among teenagers and consistency in taking medication among his infected peers.

“Consistency in taking drugs is difficult for people who start taking them when they are already older. I am lucky I was introduced to medication as a small child. It is now a lifestyle for me. But it is never too late to start taking your drugs,” he notes.

“Many people have lived their full lives with HIV. It is not a death sentence. I am happy for shunning stigma and coming out to declare my status. My life has become easier because I have nothing to hide,” he adds.

When Irene Otieno stepped out of the gates of St. Gabriel’s Gwassi Girls last month having completed her secondary education, it was a dream come true. A dream that, only five years ago, had appeared virtually unfeasible.

Irene, 19, tested HIV positive in 2012, then aged 13 years. At the time, she felt that her education and life were now on the verge of collapse. Not so.

“I have been on ARVs since. We are four children in our family. I am the only child living with the virus besides our parents, who are both positive,” she says.

Whereas most teenagers have difficulties taking ARVs in school, for Irene though, this has never been a bother to her in the least.

“Besides the school matron, no one in the school knew I was HIV positive, unless one was very close to me. I did not consider it necessary making my status public,” she says. “This made it possible for me to take my drugs without drawing the curiosity of other students,” she adds.

When DN2 visited her home in Kawidhi village, Irene was running errands and helping out her parents. Now through with her secondary education, she is embarking on yet another goal: to study nursing.

“I am a very compassionate person. I want to provide support to patients living with HIV and other diseases the same way I have been supported by my doctors, counsellors and parents,” she says.

Dr Jane Omanga, a trained psychologist, is a patient support activity manager who works with Doctors without Borders in Homabay County. She is in charge of Adolescent Champions Programme that seeks to involve adolescents in managing HIV.

“We have trained these adolescent champions on ways of managing HIV. These champions work mostly during school holidays to spearhead awareness campaigns among their peers, to share how they were able to come out the stigma situation and their experience with HIV in general,” Dr Omanga says.

For one to be an adolescent champion, she says, they must have come out openly to disclose their status and are consistent in taking their ARV drugs.

“The person must be free of stigma and must also have attained undetectable level of the virus,” she explains.

The most challenging part in adolescent life is disclosure, Dr Omanga points out, lamenting that teenagers, especially those in boarding school, do not disclose their status or honour clinical appointments. This demographic also do not take their drugs well.

“Enlisting teenagers for peer-to-peer support has been more a more effective strategy to manage HIV because these youngsters can relate more easily with their peers.

“We have seen a lot of improvement in change of attitude and behaviour. More and more teenagers have come out to disclose their HIV status. Many others have started to take their drugs with consistency,” she notes.

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Homa bay at a glance

The inspiring stories of survival and restoration of the dreams of the four teenagers have intensive intervention measures by the national government through the Ministry of Health, donors and Non-Governmental organisations to thank.

To subdue HIV and TB in the most affected counties, it has taken consistent collaborations between the government and NGOs, to improve infrastructure in health facilities and to avail drugs, counselling services and care to patients.

Medecins Sans Frontieres (MSF France) or Doctors without Borders is one such organisation that has been instrumental in tackling HIV and AIDS that has ravaged Homabay County and other counties in the former Nyanza Province.

In Ndhiwa Sub County of Homabay County, for instance, application of technology has made it easier to carry out tests on patients’ viral load, tuberculosis and early infant diagnosis, which traditionally took long to test.

MSF’s introduction of Point of Care (POC), a diagnostic testing system that is near in time and place of the patient’s care, has significantly boosted how HIV and TB patients are cared for.

Unlike conventional lab tests, point of care tests are faster and easier and do not require a lab technician to perform.

Additionally, the launch of the multi-disease Genexpert platform by the First Lady Margaret Kenyatta in Kisumu three weeks ago is being touted as a masterstroke that will ease the struggle of testing patients’ samples, transforming the treatment landscape of treating for HIV and TB.

The GeneXpert can test viral load from a sample, TB and even early infant diagnosis (EID). It takes only 92 minutes to get test results.

Already, MSF France is piloting seven GeneXpert machines in hospitals in Homabay County.

For years, detecting HIV infection in paediatric patients aged 18 months and younger was a challenge. A 2017 study shows that 294 HIV exposed children aged 9 months, 147 (50 per cent) of them never received any polymerase chain reaction (PCR) result, which determines viral presence in the infant.

This consequently affected administration of anti-retroviral treatment (ARTs), thus leading to higher infant mortality rates.

Near point of care viral load has the potential to improve management of patients with high viral load by shortening delay of result delivery to clinicians, researchers say.

Another invention is the establishment of discharge clinics. These centres ensure a smooth transition for patients discharged from hospital wards as they return home.

EFFICIENCY IN SPECIMEN HANDLING

At the discharge clinics, the patient is seen by a doctor more frequently, for longer and care is at tertiary level. After each session, a patient is allowed to go home.

The sub county also has perhaps the most efficient way of moving samples from collection centres to the lab. Before, specimens would be taken from health clinics to laboratories strewn many kilometres away, forcing patients to wait for the test results for days. According to MSF’s deputy Medical Project Coordinator in Homabay County Dr Michael Orenge, doctors would wait for the test results to issue prescription or change medication for the patients.

“This often put patients who were not responding well to treatment at risk of death. The majority of these patients would be so sick and would succumb to HIV-related diseases two days after reporting to the health facilities,” narrates Dr Orenge.

This risk has since been eliminated though with the emergence of the sample transport network that involves motorcyclists transporting blood samples, CD4 and sputum samples for test at selected laboratories in the county.

“Motor cycles are fitted with transport boxes and riders trained on biosafety and proper handling of the samples. The objective of the sample transport network is to expand access to timely diagnostic and monitoring tests. This has remarkably shortened results turnaround time for HIV and TB patients in decentralised facilities in the county. This programme is run jointly by the Ministry of Health and Medecins Sans Frontieres,” explains May Atieno, a laboratory technician at MSF.

This programme has cut the waiting period of sample results from three months to less than a day, greatly improving care for HIV and TB patients, Dr Atieno says.

Homa Bay HIV statistics from Kenya Demographic and Health Survey (KDHS, MSF)

HIV prevalence: 24 per cent of the total population. This is five times the national prevalence.

Incidence: two out 100 people are infected with HIV every year.

There were 10625 new HIV infections in 2017.

Adolescents accounted for 2945 cases of these new infections.

13965 adolescents in Homabay County are HIV positive.

Four out of 10 infected people do not know their status.