Tag Archives: stigma

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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What are the prospects of Africa achieving universal access to HIV treatment?

Universal access to HIV treatment is one of the targets of Millennium Development Goal 6 (MDG6), the indicator for which is the proportion of the population with advanced HIV infection with access to antiretroviral drugs (ARVs). For Africa, achievement of this goal is a monumental task considering the sheer magnitude of the problem. In 2008 sub-Saharan Africa was home to just over 22 million of the world’s estimated 33.4 million people infected with HIV[i]. Almost every country in the region has suffered a generalized HIV epidemic, with the highest HIV prevalence rates existing in southern and eastern Africa. South Africa is reputed to harbour the greatest number of people living with HIV in the world (about 5.7 million).

In the past decade there has been a considerable increase in access to HIV treatment in resource-limited settings where antiretroviral medications were previously unavailable, rising 10-fold between 2003 and 2008[ii], thanks to global funding sources, especially the US President’s Emergency Plan for AIDS Relief (PEPFAR) and the Global Fund for AIDS, Tuberculosis and Malaria (GFATM). According to WHO and UNAIDS[iii], the coverage of ARV therapy in the sub-Saharan Africa, rose from 2% in 2003 to an estimated 44% of adults and children by December 2008. However, important access gaps still remain. In Kenya, for example, by 2009 only 290,000 persons that required ARV treatment were receiving it[iv], at a time when more than 1.4 million Kenyans were living with HIV[v]. In the sub-Saharan Africa, by end of 2008 only four countries (Botswana, Namibia, Rwanda and Senegal) had ARV coverage of 50% or more among adults and children who were eligible for the treatment and only six countries had achieved coverage of 50% or more of pregnant women for the prevention of mother-to-child transmission of HIV[vi].

The rapid expansion of treatment access is saving lives, improving quality of life, and contributing to the rejuvenation of households, communities and entire societies. As the number of people receiving ARVs increases, so does improvement in survival among people living with HIV. Evidence suggests that improved access to ARV therapy is helping to drive a decline in HIV related mortality[vii]. In Kenya, AIDS-related deaths have fallen by 29% since 2002[viii]. Paradoxically, this reduction in AIDS-related deaths translates into an increasing population of HIV infected persons at any given time. This implies there is a continuous increase in demand for HIV treatment. However, some data has suggested that ARV therapy may lower HIV transmission rate by as much as 90 percent[ix]. It is believed that improved access to ARVs may help to lower viral load both at the individual and community levels, this resulting in reduced incidence of new infections. Treatment coverage for children have remained lower than for adults[x] due to a number of reasons, among them: diagnosis of HIV in children is more difficult; HIV infection tends to progress faster to AIDS and death in children; and appropriate ARV treatment regimens for children are less accessible.

Challenges for scaling up of ARV treatment

Achievement of the goal of universal access to HIV treatment requires that the scope of coverage of HIV services is rapidly expanded. This in turn demands sustainable financing mechanisms, human resources, quality in service provision and use of services. It will be important to understand and address the key factors that limit the scope of coverage, and impede the demand for and utilization of HIV services, which include a weak, usually under-funded, health system, weak management and governance systems, especially with regard to procurement and distribution of needed resources- for counseling, testing, diagnosis and clinical management and monitoring of treatment, and referral systems. There is need for strengthened logistics systems, including capacity building, in order to enable adequate supply of HIV test kits and drugs at all levels as appropriate.

Acceptability of voluntary HIV testing is another challenge to the scale-up and effectiveness of HIV treatment. It is also a factor in late diagnosis and entry into ARV treatment programmes. In Kenya, as many as 4 out of 5 HIV-infected persons do not know their HIV status, while 63% that should be on treatment, do not know their status, and are therefore not on ARV therapy[xi]. Stigma and discrimination of HIV infected persons in most African countries remain important reasons for fear to come out for testing and declaring status.

A serious challenge is the sustainability of access to affordable drugs. Scaling up of HIV treatment faces the barriers to be created by the adoption of anti-counterfeits policies and laws[xii] that would block the production and importation of life-saving generic medicines, particularly ARVs.

Sustainability of funding of treatment programmes is a formidable challenge. As mentioned above the rapid increase in access to ARVs has largely been driven by PEPFER and Global Fund funding. However, since the Obama administration, there has been a stagnation of PEPFAR funding which, among other things, has discouraged enrolment of new patients into treatment programmes unless they are replacing others who have left or died. This, in turn, would allow PEPFAR funds to support treatment of an array of health issues, including those not directly related to HIV, and stabilize funding for a variety of health concerns[xiii]. This implies many countries will be forced to treat the very sick patients first, and will be hard put to implement the updated WHO standard which raises the cut-off point for commencing ARV treatment from a CD4 count of 200 to 350.

The lesson is clear: whilst advocacy for enhanced international assistance must continue, at the same time African governments must increase national contribution to the cost of health care including HIV treatment, and increasingly reduce over-reliance on foreign support for critical sectors such as health care. For example, it has been reported that foreign agencies pay for more than 90 percent of Uganda’s AIDS-treatment regimens (Uganda is certainly not alone in this category). As the East African[xiv] has put it “donors hold the power of life and death over people living with HIV in Uganda”. Funding from the Global Fund has also been unpredictable. In the wake of repeated corruption allegations, in 2009 the Fund approved just under 6 percent of Uganda’s request. Kenya also has frequently run into a collision with the Global Fund over accounting issues, which has resulted in delayed release of subsequent allocations[xv]. Only Malawi, dubbed the model of success in the sub-Saharan African fight against AIDS, stands alone in this respect- the country is said to have actually doubled its own health spending. African governments can learn a lesson from the trend in Latin America, Asia, and the Middle East, where most governments double their health budgets while receiving aid[xvi].

Without enhanced international assistance and strong commitment by African governments to immediately increase budgetary allocations to the health sector, including for the purchase of ARVs, achievement of universal access to HIV treatment will remain an illusion. It is the hope that the resolution at the recent African Union Summit in Kampala, 19 to 27 July 2010, committing African leaders to invest more in ‘community health workers’ and to meet the Abuja target of investing up to 15% of government expenditure to health, will not simply gather dust like others in the past decade.

Another challenge, not frequently verbalized in medical circles, is ensuring access to appropriate diets for people entering HIV treatment programmes. Addressing the nutritional needs of such people has not been adequately prioritized within HIV and AIDS prevention, care and mitigation programmes that are currently underway in many sub-Saharan African countries. This is despite the knowledge that HIV infection, food and nutrition are closely linked, and cumulative evidence suggests that bolstering the nutrition of HIV infected persons can sustain them in active productive life, delay the onset of AIDS and permit longer survival. Malnutrition, an endemic problem in many parts of the region, is known to exacerbate the effects of HIV by further weakening the immune system, and contributing to poor tolerance to, as well as effectiveness of ARVs[xvii].

Among the major concerns voiced by groups of people living with HIV in five African countries visited by the writer[xviii], was food shortage, especially balanced diet that they are regularly advised to take while on treatment with ARVs[xix]. For example, one person in Zambia complained that he had been instructed to eat five meals a day while on treatment; this at a time when he could barely get one meal per day! The result is that many simply did not take their drugs.

Adequate nutrition improves the effectiveness of HIV treatment and sustains quality of life. In view of this, nutritional assistance should be an important component of HIV treatment programmes. This may be in the form of nutritional assessment, counseling, and increasing access to food, either provided directly, or through social protection programmes such as cash transfers, or facilitated income generation activities. In the long run, mitigation of the impacts of HIV and AIDS should include interventions that focus on increasing access to food and improved diets for HIV infected persons, for example, through measures that enhance household incomes, and improved agricultural productivity.

Related link

Food insecurity a serious threat to achieving universal access to HIV treatment in Kenya-millennium development goal Target 6B


[i] Joint United Nations Programme on HIV/AIDS (UNAIDS) and World Health Organization (WHO) AIDS epidemic update: November 2009.

[ii] World Health Organization, United Nations Children’s Fund, UNAIDS (2009). Towards universal access: scaling up priority HIV/AIDS interventions in the health sector. Geneva, World Health Organization.

[iii] Joint United Nations Programme on HIV/AIDS (UNAIDS) and World Health Organization (WHO) AIDS epidemic update: November 2009.

[iv] Dr Ibrahim Mohamed Scale up of access to ART in Kenya National Aids Control Program; Ministry of Medical Services Kenya, November, 2009

[v] National AIDS and STI Control Programme, Ministry of Health, Kenya. July 2008. Kenya AIDS Indicator Survey 2007: Preliminary Report. Nairobi, Kenya.)

[vi] Joint United Nations Programme on HIV/AIDS (UNAIDS) and World Health Organization (WHO) AIDS epidemic update: November 2009.

[vii] Jahn A et al. (2008). Population-level effect of HIV on adult mortality and early evidence of reversal after introduction of antiretroviral therapy in Malawi. Lancet, 371:1603–1611; Mermin J et al. (2008). Mortality in HIV-infected Ugandan adults receiving antiretroviral treatment and survival of their HIV-uninfected children: a prospective cohort study. Lancet, 371:752–759.

[viii] National AIDS Control Council, National AIDS/STI Control Programme. Sentinel surveillance of HIV and AIDS in Kenya 2006. Nairobi, National AIDS Control Council, National AIDS/STI Control Programme, 2007.

[ix] Attia S et al. (2009). Sexual transmission of HIV according to viral load and antiretroviral therapy: systematic review and meta-analysis. AIDS, 23:1397–1404.

[x] UNAIDS (2008). Report on the global AIDS epidemic. Geneva, UNAIDS.

[xi] National AIDS and STI Control Programme, Ministry of Health, Kenya. July 2008. Kenya AIDS Indicator Survey 2007: Preliminary Report. Nairobi, Kenya.)

[xii] These include the Anti-Counterfeit Act of 2008 in Kenya, the Counterfeit Goods Bill in Uganda and the EAC Anti-Counterfeits Bill

[xiv] Esther Nakkazi Uganda: ARV Shortage Sets in As Aids Funding Falls East African 3 August 2009: http://allafrica.com/stories/200908031372.html

[xv] Gatonye Gathura and David Njagi Kenya: Row With Global Fund on Cards Daily Nation On The Web 5 October 2009: http://allafrica.com/stories/200910051673.html

[xviii] During 2006/7 the writer had the privilege of interacting with groups of PLWHA in Kenya, Tanzania, Uganda, Zambia and Zimbabwe, whilst a consultant to Heifer International of Little Rock, Arkansas, USA.

[xix] Japheth Mati (2010) Food insecurity a serious threat to achieving universal access to HIV treatment in Kenya (Millennium Development Goal Target 6B) http://blog.marsgroupkenya.org/?tag=africa-health-info

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