What’s happening to Kenya’s first generation born HIV-positive?

Globally, there is a general lack of awareness of the health and social challenges that face the first generation of children born HIV positive; in fact, this has not been an issue of special focus. Yet the population of that group of people is not only increasing in numbers, it is also growing older. According to UNAIDS, of an estimated 390,000 children born with HIV in 2010 globally, 90 percent of them were born in 22 countries, of which 21 are in sub-Saharan Africa, the odd one out being India[1].

There is a lot of hope that with increasing access to improved PMTCT services especially the availability of the more effective antiretroviral regimen for pregnant women and their newborn babies, fewer children will be born HIV positive. Where highly active antiretroviral therapy (HAART) has been employed, the rate has reduced to below 5 percent. As a result, in 2011 UNAIDS and PEPFAR jointly launched the Global Plan towards the Elimination of New HIV Infections among Children by 2015 and Keeping Their Mothers Alive. The plan has a main focus on the 22 countries (see above).

Source: UNAIDS and PEPFAR bring together Health Ministers and partners to advance progress in ending new HIV infections in children

For many years there was a strongly held assumption that survival from birth to adolescence with HIV was so unlikely without treatment as to be negligible, and that HIV in late childhood was very unusual. The accepted view was that the majority would die before the age of five. However, there is now accumulating evidence that children born with HIV do survive into teens and adults. In Kenya, the oldest of these children are now approaching 30[2]. In Uganda it is estimated that as many as 150,000 children are already living with HIV right from childhood. In 2006, the oldest surviving of young people born with HIV in Uganda turned 23 years old, thanks to antiretroviral therapy[3]. That same year, The Aids Support Organization (Taso) had registered 4,696 ten to nineteen-year-olds living with HIV since infancy, while another 1100 young people were receiving care at the Mildmay Centre and Mulago Hospital.

A recent article by Amelia Hill[4] entitled Teenagers born with HIV tell of life under society’s radar, HIV-positive youngsters who were infected before or at birth reveal their secret lives, highlights some of the challenges faced by youngsters in the United Kingdom who were born HIV positive. These challenges include:

  • Coping with the discovery that they are HIV positive: Usually the doctors and the parents would have withheld the information until such time as it is considered “safe” to divulge the status to the child. One 18 year old describes how at nine years old a careless receptionist at his local hospital blurted his status, and his reaction to the shocking revelation: “I remember standing there, with my mother’s hand around mine, as these feelings of complete confusion and fear washed over me. I suddenly realised that the pills my mum had been giving me every day – that I had thought were sweeties – were medicine, after that day at the hospital, I would lock myself in the bathroom when my mum took them out of the cupboard. Or I’d pretend to swallow them, and then throw them away. I know I’m killing myself,” he says truthfully, but with studied nonchalance. Inconsistency in the taking of medicines has important implication to development of resistance to specific drugs by the virus.
  •  Fear of stigma: HIV-positive youngsters have expressed worry over being branded by the stigma that is attached to HIV in society. “Society forces me to live two lives, one of which – the one where I’m honest about my status – I have to keep completely secret from the other one. It’s partly because I have to live this life of shame and secrecy that I find it so hard to take my meds….I’m angry about the stigma in society that makes me have to lie about my status“. Some adolescents have admitted having considered killing themselves.

Two studies, one in Zimbabwe and the other in Uganda have specifically highlighted some of the issues facing adolescents and young adults who were born HIV positive in those countries. In Zimbabwe, a clinical study[5] has suggested that as many as one in four children may survive into adolescence without diagnosis or treatment. Of the children under HIV care in Zimbabwe during 2008, 42% were aged 10-19 years. This study has bust the long held assumptions that HIV in late childhood is very unusual, and that survival from birth to adolescence with HIV was so unlikely without treatment as to be negligible. Among the problems most commonly faced by adolescents were psychosocial issues and poor drug adherence (which is critical in keeping the ever-changing AIDS virus at bay).

The Population Council in Uganda[6]  has addressed reproductive health needs of adolescents born with HIV. It involved a sample of 732 adolescents aged 10-19 years. The study shows that these adolescents are most likely to be orphaned, hardly any of the teens and young adults born with HIV have both their parents alive, As such they are subject to the challenges that face orphans generally. They were also found to be at risk of entry into casual relationship, using no protection, and with persons whose HIV status they do not know. Most of them conceal their status to their partners. The study reports that as many as 61 percent of the sexually active adolescents surveyed said they did not use any protective method during their first time sex, and do not know the status of their current partner.

There are lots of similarities between the findings in the two Africa-based studies and the issues raised by their counterparts in the UK report. What these limited studies clearly reveal is the inadequacy of our knowledge regarding the social, psychosocial and health challenges faced by adolescents and youths born HIV positive and their guardians.

[1] UNAIDS and PEPFAR bring together Health Ministers and partners to advance progress in ending new HIV infections in children http://www.unaids.org/en/resources/presscentre/featurestories/2012/may/20120523whagp/

 [5] Rashida Ferrand,a Sara Lowe,b Barbra Whande,b et al., Survey of children accessing HIV services in a high prevalence setting: time for adolescents to count?Bull World Health Organ. 2010 June 1; 88(6): 428–434. Published online 2009 December 16. doi:  10.2471/BLT.09.066126

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Comments

  • states  On August 15, 2014 at 7:22 pm

    this information is so helpful to me because its helping me to get closure after loosing my loved one due to HIV

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