Remembering Nkosi Johnson and all kids living with HIV this youth month

Grave of Nkosi Johnson, the late HIV/AIDS activist.

About 37% of youth missed or refused antiretroviral treatment (ART) in the past month. This is according to a study conducted in Rwanda in 2016. The study of 193 youths sought to investigate the association between mental health and ART adherence.

The South African HIV Clinicians Society released guidelines titled “Guidelines for adherence to antiretroviral therapy in adolescents and young adults (expanded version): Recommendations, resources and references”. The society reminds us that in 2015, adolescents represented the fastest-growing age group of people living with HIV (PLHIV), accounting for 5.9% of the burden of HIV.

They also state that this means there is a need “for greater understanding and suitable adaptation of HIV care and treatment services”. Sustaining optimal ART adherence in adolescents and youth living with HIV (AYLHIV) is indeed a major healthcare challenge, fundamentally due to regimen complexity and adherence efficacy.

Adolescents – aged between 10 and 19 – especially female adolescents, continue to show high infection rates. Worldwide, 25% of all new infections are in adolescent girls and young women aged between 15 and 24. And unlike most age groups, adolescent mortality is increasing, with HIV being the leading cause of adolescent death in Africa (UNAIDS, 2019).

Adolescents are also less likely to seek HIV services or stay on treatment. HIV treatment outcomes, including retention, are worse for this age group than for adults.

These facts remind us of Nkosi Johnson who at a tender age of eleven (11) years stood like an emblem of struggle, “a reluctant hero and activist” and smiled bravely to demand urgent and decisive action against HIV in South Africa.

Nkosi Johnson stood on a huge stage at Kings Park Stadium during the 2000 Durban AIDS conference, in a dark suit hanging on his fragile and tiny frame, with his big heart visible for all to see.

Nkosi Johnson made a clarion call at his world renown speech that we all must remember. First, he asked parents to be open about HIV with their kids. In his cracking voice, he said; “My mommy Gail and I have always been open about me having AIDS.”

The primary problem with addressing the needs of adolescents and youths living with HIV demands that parents are open to their kids about their HIV status. Many kids are currently left behind because parents don’t have the stamina to face their stigma and HIV status. So, in memory of Nkosi Johnson and to accord these young souls – and the “fastest-growing” population of AYLHIV – a better future, we must address this problem.

Children have the right to dream. Let’s help them realised these dreams and not die prematurely and unnecessarily.

He also asked that we don’t discriminate against children living with HIV. In his words, he thanked the government for developing a policy on HIV and said; “I am very proud to say that there is now a policy for all HIV-infected children to be allowed to go into schools and not be discriminated against.”

Only 50% of those aged 15-19 successfully initiated antiretroviral therapy through to viral load testing. This is a test that measures the effectiveness of the treatment and usually takes place at six months, one year, and then annually after treatment is started.

A 2019 study by Maskew (and others) indicates that only 50% of those aged 15-19 successfully initiated antiretroviral therapy through to viral load testing. This is a test that measures the effectiveness of the treatment and usually takes place at six months, one year, and then annually after treatment is started.

A factor affecting the rate of treatment among adolescents is that they are dealing with changes in parental versus personal responsibility for maintaining their health. They may be taking more risks, relying more on their peers for support, and becoming more interested in serious sexual relationships. They may drop out of treatment to avoid disclosing their activities.

Nkosi Johnson also says something we must always put in mind when thinking about children and HIV. He says; “I hate having Aids because I get very sick and I get very sad when I think of all the other children and babies that are sick with Aids. I just wish that the government can start giving AZT [an antiretroviral medication] to pregnant HIV mothers to help stop the virus being passed on to their babies.”

All children hate living with HIV and we can make it better and easier than Nkosi Johnson had to endure.

To do this we must heed his clarion call; “Care for us and accept us – we are all human beings. We are normal. We have hands. We have feet. We can walk, we can talk, we have needs just like everyone else. Don’t be afraid of us – we are all the same.”

28,18 percent of the South African population is between the ages of 0 – 14 years. While those under 25 years make up 45, 42 percent. HIV prevalence among young women is nearly four times greater than that of young men. In 2018, 540,000 young women were living with HIV, compared to 180,000 young men.

In the same year, 69,000 young women became HIV-positive, compared to 28,000 young men, meaning they are over three times more likely to acquire HIV than their male counterparts. The difference is particularly acute among 10 to 19-year-olds, with 33,000 adolescent girls becoming HIV-positive in 2018, compared to 4,200 adolescent boys. We can’t destroy a future by our inaction in protecting kids from HIV when there is treatment available (UNAIDS, 2019).

Maybe Nkosi’s power was because he was an “innocent victim” who caught HIV through his mother rather than through sex (like many of our adolescents and teens today); perhaps it was because he had no agenda than to live for as long as he could and to help others from suffering similarly; possibly it was because he was black and poor.

But Nkosi Johnson’s frail skeletal body and thin voice became as much an emblem of suffering, activism, and revolution as the dead body of Hector Petersen, being carried after the massacres in Soweto in 1976, was in the time of apartheid.

Nkosi Johnson passed on 1 June 2001. Let’s honour his memory by heeding his call for our future leaders!