For HIV-positive teens, stigma seen as greatest threat, not virus

Sometime in February this year, President Uhuru Kenyatta was addressing an anti-HIV gathering in Nairobi when he suddenly deviated from his speech, looked into the crowd and asked one of the HIV-positive teenagers listening to him to rise up and tell him what his government could do to make their lives better.

With that sudden invitation, the room went silent. The President’s baritone vanished from the loudspeakers in the room. Heads turned towards the group of teenagers, from where they expected a volunteer to rise. The teens, in return, bowed their heads, unwilling to rise up to the challenge.

Pin-drop silence.

After what seemed like an eternity of uneasy calm, a young girl rose from among the teens. You could hear the collective heave of expectation as she made the first unsteady steps towards the microphone.

Mercy Nduku, 17, was not part of the programme, not even part of the youth leadership invited for the event. She had just itched to end the uncomfortable silence.

She knew the things she wanted the government to do for her and her peers. She, after all, had sat through numerous discussions with her HIV-positive colleagues to take stock of their struggles, and inwardly had waited for this moment.

Her colleagues, part of the 200-member initiative dubbed Sauti Sikika (Voice Be Heard), a small outfit supported by the National Empowerment Network of People Living With HIV/Aids in Kenya (Nephak), watched as she started addressing the President.

STOP DISCRIMINATION

Her message was simple: end the discrimination, and the stigma. She did not ask for mountains, but for something she believed every human being could afford. And then, amid a thunderous applause, she walked back to her seat.

Ten months later, Nduku was invited to address the gathering at the World Aids Day celebrations in Nairobi on December 1, graced by, among others, the First Lady Margaret Kenyatta.

“Stop discrimination,” she repeated her message. “It is the biggest threat to overcoming the spread of HIV, especially among us the young people.”

It was, again, a simple message, but one laden with a lot of questions. Why, for instance, did she think discrimination was the “biggest threat” to overcoming the spread of HIV? And what kind of discrimination was this she kept talking about? Was it from the society? Or colleagues? Or state institutions?

To answer those questions, we traced her to her Masewani home in Kangundo, Machakos County, and there she clarified her never-changing message.

“The shame and stigma of HIV is literally killing us as we suffer in silence,” she said. “That is why none of my colleagues stood up to address the gathering in Nairobi when the President invited us.”

Even as she talked to us, you could see the passion in her eyes. And beneath that passion you could sense the desperation in her voice. She lamented the lack of access to HIV drugs, the outdated sex education curriculum that she and her agemates are expected to study in school, and the outright refusal by opinion leaders to address the realities of the disease on the ground, especially in rural Kenya.

“For instance,” she said, “even though sex and HIV education are part of the school curriculum, they are not taken seriously in most schools. The teachers, for whatever reason, just wearily brush over the topics, skipping some really important sections of the lessons and so giving half-truths to their students. This seems to be a general problem, because it has been repeated in our discussions at the group level.”

Nduku is particularly bothered by a science book that she says claims HIV kills. Yet, she stresses, “we know HIV does not kill”.

CHANGE CURRICULUM

“I have argued with teachers and fellow pupils about this several times. I remember arguing with my science teacher in Standard Six about the same. He insisted I was wrong, and then threw in the authority card by reminding me that he was the teacher. But I know my truth. I have HIV and I am not dead, that’s all that matters.”

But children are wired to believe their teachers, not their colleagues, and so most carry on with the misleading assumptions that reinforce the misconceptions Nduku and her colleagues are trying to eliminate.

“I think this old message has continued to entrench stigmatisation,” she explains. “We need to unlearn it, and that can’t happen unless the curriculum is changed.”

When she brought this to the attention of the President, Kenyatta promised that the curriculum would be changed to reflect the realities of HIV/Aids.

He then asked the Cabinet Secretary for Education to re-examine the national curriculum to better engage with young people living with HIV and to eliminate stigma and discrimination in schools.

Nduku, who was born with the virus, was only put on medication for the first time in 2003, then aged five, when her mother died of Aids-related complications. Her aunt, Ann Yula Mutuku, says Nduku’s father died three years later, again of similar complications, and that Nduku has been in her care since then.

The family only came to know of her condition when a doctor, who had treated her for various diseases — a never-ending cough and frequent bouts of malaria and pneumonia, for instance — advised a detailed blood sample analysis. Immediately, Nduku was put on Septrin medication.

She began taking antiretrovirals (ARVs), the drugs given to patients to suppress the HIV virus and stop its progression, after six months.

“She still didn’t know what the drugs were for. She was only five and in nursery school at the time, too young to understand,” says her aunt.

Being the guardian, Mutuku was counselled and educated on how to treat and feed her niece. But when Nduku came of age, the burden shifted from her aunt to herself. She was the one to explain herself to colleagues, friends and whoever wondered why she kept popping pills.

MEDICINE HOLIDAY

“While I was in primary school I didn’t have much trouble swallowing the medicine because I did it early in the morning at around six before I went to school, and again in the evening when I returned home. The problem came when I joined secondary school,” says the Form Two pupil at Fr Heeran High School in Nguluni, Kangundo.

“It was while in Form One, and still a First Term fresher, that I had my first ‘medicine holiday’. I skipped medication for about three days because I was stressed about having to always hide while taking the pills,” she says.

She had made plans to have a constant supply of the ARVs, and had carried to school a whole term’s supply of pills, but now she was finding it difficult to explain to fellow students why she was taking drugs yet she looked healthy.

And so she told herself that since she felt okay, she was okay. Nothing would happen to her if she stopped taking the medicine. Of course she was wrong, and she immediately started losing weight and developing complications. That, she says, explains why so many young people living with HIV die young when they join boarding school. All of a sudden thrust into a world where they have to take charge of their lives, and with hundreds of pesky teenage eyes rummaging through their lives, they cannot cope with the negative attention, and so they stop taking their ARVs altogether.

The problem is a global phenomenon. For instance, the US Aids Info support centre, in a 2014 article titled Considerations for Antiretroviral Use in Special Patient Populations, says that “adolescents are developmentally at a difficult crossroad”, and that “their needs for autonomy and independence and their evolving decisional capacity intersect and compete with their concrete thinking processes, risk-taking behaviours, preoccupation with self-image, and need to fit in with their peers”.

This explains Nduku’s hesitation with ARVs in school, and also “makes it challenging to attract and sustain adolescents’ focus on maintaining their health, particularly for those with chronic illnesses”.

The paper goes on to say that “HIV-infected adolescents are especially vulnerable to specific adherence problems on the basis of their psychosocial and cognitive developmental trajectory”, and that, compared with adults, “these youth have lower rates of viral suppression and higher rates of virologic rebound and loss to follow up”.

According to the National Aids Control Council (NACC), 435,225 adolescents (ages 10 to 19) are HIV-positive, while another 119,899 have the virus “but are not yet identified”.

As a result of delayed treatment, and the overbearing stigma and discrimination associated with being HIV-positive, about 29 per cent of all new infections are among adolescents and young people, according to a survey released by the Ministry of Health on World Aids Day this year.

VULNERABLE GROUP

As a result, Aids-related complications are the leading cause of death among adolescents and young people, with 9,720 adolescent and young people dying of such in 2014 alone.

The report further shows that one in every five youth aged between 15 and 24 years had sex before the age of 15. Of concern to researchers is the fact that even though more girls than boys use condoms during their first sexual encounter, they abandon the protection with partners of unknown status (89 per cent) as sexual relationships progress.

“We are the most vulnerable group,” says Nduku. “We are one of the segments most at risk of HIV. We need prevention strategies tailored and testing campaigns focused specifically on adolescents. Many of us are dying young because we do not know our status, or because of the stigma associated with the virus.

“Our parents think we are too young to know our status, or to know about sex and HIV. Nobody wants to discuss these things with us. They mistakenly think they are protecting us by not disclosing it to us or how it is spread. Yet some of us were born with it and HIV and sex amongst teenagers is a reality. The earlier you know your HIV status the better because then you are put on medication and you protect yourself and others.” 

Many HIV-infected adolescents face challenges in adhering to medical regimens for reasons that include: 

•  Denial and fear of their HIV infection

•   Misinformation

•   Distrust of the medical establishment

•   Fear and lack of belief in the effectiveness of medications

•   Low self-esteem

•   Unstructured and chaotic lifestyles

•   Mood disorders and other mental illness

•   Lack of familial and social support

•   Absence of or inconsistent access to care or health insurance

•   Risk of inadvertent parental disclosure of the youth’s HIV infection status if parental health insurance is used.

As Kenyan youth struggle, Chinese counterparts are falling 

CHINESE HEALTH OFFICIALS and researchers have raised alarms over an increase in new infections among high school and college students. Most are young men who have had unprotected sex with other men, Wu Zunyou, director of the National Center for AIDS and Sexually Transmitted Disease Control and Prevention, told China Daily in November this year.

As of October, China had about 575,000 people living with HIV/AIDS, according to Chen Zhongdan, a Chinese adviser to UNAIDS, the United Nations’ AIDS-fighting agency.

Before 2009, most reported HIV infections in China were caused not by sex but by intravenous drug use, blood transfusions, mother-to-child transmission and an “unknown” factor as high as 17.5 per cent, according to the figures from the Chinese Center for Disease Control and Prevention.

But now sexual transmission accounts for more than 92 per cent of all new infections, more in line with international norms, the figures show. (By the end of 2014, nearly 39 million people were living with HIV/AIDS worldwide, according to UNAIDS.)

From 1985 to 2005, the statistics showed, about 30 per cent of HIV infections in China were caused by the blood trade, which was often supported by local officials. A common practice was to extract plasma from the blood, which was then pooled and reinjected into blood sellers so they could give more often. The sharing of needles in intravenous drug use was also a major route of infection.

The state has been effective at containing those two problems, said Jing Jun, the director of the Center for Research on Public Health at Tsinghua University.

“But the government seems much less effective in controlling the private sphere of ordinary people’s lives, as evidenced by the rapid increase of HIV infections via heterosexual and homosexual routes,” he said. “The government needs to learn how to use soft power through educational means to change people’s unsafe sexual behaviour.”

So while blood sales, drugs and mother-to-child transmission have dropped drastically as factors, sexual transmission is taking their place and increasing infections overall, with growth especially fast among gay men.

From 1985 to 2005, just 0.3 per cent of reported new infections occurred among men having sex with men. By the end of June 2015, that had risen to more than 27 per cent, the statistics showed.

Male high school and college students ages 15 to 24 are an emerging high-risk group, according to Wang Ning, an Aids specialist at the Chinese Center for Disease Control and Prevention.