What i found out

I painted a series of small figures showing women holding up the red Ribbon, the proceeds from the exhibit went to fund school fees for girls living with HIV. The exhibit consisted of 36 small painting and each canvas was accompanied by the story of a young woman or girl living with HIV. These stories came from Kenya, most were written in December 2015 - harrowing and hopeful at the same time, I have analyze the language and teethed out some of the threads and messages within.  It is from their words that I have drawn the following conclusions:

1. HIV positive girls secure in school have a better health outcome
2. School protects girls from sexual violence and HIV infection
3. Support groups are just as essential for people living with HIV and they are for global health community

Girls education matters, not a day goes by without a report on its importance. The economic augment summarized by UNICEF is that every additional years of education influence GDP per capita[1].  They note that for every additional year of secondary school education a girl’s potential income increases by 15 and 25%. Just as important, is that extra education allows girls are better equipped in life skills.

Yet today, the World Bank estimates that 62 million girls between the ages of six and 15 are not is school and the leading reason for this is poverty. In Kenya, like in many countries, school is not free, even if fees are found, uniforms, shoes and books need to be purchased. Add to this menstruation and lack of access to sanitary products, and it is estimated that girls can miss up to 4 days of school a month due to their period[2]. Girls living with HIV are further disadvantaged, continued medical care, stigma,  often orphaned and relying on extended family to support means they live in fear of the future. The testimonials note repeatedly the lack of support these children face.

‘I am always sent out of school due to school fees… I know my aunt would wish to pay but she cannot afford it.’ Phenny (aged 13)

‘My uncle promises to pay my school fees but he cannot. I drop out of school.’ Tinha

‘When I am nine I have to drop out of school to go and take care of my uncle’s wife who has just had a baby’. Linet (aged 20)

‘I am unable to join high school because of lack of school fees and so I remain at home to support my aunt with housework.’ Pauline (aged 23)

‘Last month I was very sick with pneumonia because of the cold I get exposed to when my stepmother sends me out of the house late in the evenings or early mornings…. So long as I stay with my stepmother I will always attend school irregularly because sometimes she asks me to remain behind and do house chores.’   Lavine (aged 12)

In the last 5 years I have followed the lives of girls living with HIV by raising the funds needed to send them to school. In providing the security of yearly paid school fees, along with uniforms, books, shoes, school meals and sanitary products I have noticed a dramatic increase in the girls’ health. In a paper by Humphrey^[3], he notes that adults underestimate how much children worry and the effect that this stress on their health. Increased worries puts pressure on what scientist call ‘heperarousal’, this refers to constant exposure to the stress which lead to an increase in the hormone cortisol^[4]. Cortisol depress the immune system and leads to a number of health issues such as cardio and digestive among others. In the HIV positive child already dealing with a reduced immunity this is an open invitation to opportunistic infection.  The precarious lives that these young girls lead, coupled with the stress of managing a stigmatized chronic disease means that despite access to treatment morbidity remains high. In 2014 UNAIDS estimates that 150,000 children died of AIDS related causes, this represents 13% of all AIDS related death and is disproportionate to the number of death among adults[5].

Phenny and her younger sister Molly were both born HIV positive and orphaned at a young age, they are now cared for by their aunt. They were attending school haphazardly due to financial constraints when I met them. Phenny was suffering from open sores on her face that were not healing, not only was she being sent home from school because of unpaid fees, fear that her skin condition could infect others pushed teachers to send her home too. At that time she had very low self-esteem. In January 2015, Phenny and Molly’s school fees were paid for the year, they had new uniforms and shoes and would benefit from a hot school meal daily. The girls sent me their school reports and informed me of their wellbeing. Despite only limited academic progress I provided praise for their effort and was keen to hear their achievements. By the end of the years all of Phenny’s sores had cleared up and both girls were healthier. Providing the secure haven of school and removing an extra stressors from these girls’ lives has a positive effect on their health and the management of their HIV infection. Understanding the correlation between attending school and the wellbeing of people living with HIV needs further investigation. In a paper by Cutler and Lleras-Meney[6], interventions and policies that include and increase education could have an important effect on population health, this leads me to conclude that HIV interventions with and education competent has the potential to increase health outcomes for children living with HIV.

 ‘I want to go to school like other children.  I want to get education and food.  I am told some schools give children food.  I want to wear shoes and school uniform.  When I grow up I don’t want to continue being poor.  I want to be able to work in a big office, live in a nice house and enjoy good things of life.  I still pray for my mum and I hope that one day I will be able to go to school like other children and  have  new friends and play with them’. Angela (aged 9)

UNIAIDS estimated that 62% of all new HIV infections occur in young women^[7]. Each week over 4,500 young girls are infected with HIV. The reasons for these new infection are numerous and are illustrated in the accounts below:

‘On my way home, I meet these three men I cannot see clearly, they attack and gang rape me. I am injured and my parents take me to hospital’. Becky (aged 22)

‘I remain at home to support my aunt with housework. One day she sends me to my step brother’s house. I find him with his children his wife is not at home. We prepare dinner and after dinner I am told to sleep on the sofa. At midnight I find myself naked in this man’s bed. He tells me not to tell anyone or else he will kill me’. Pauline (aged 23)

‘I meet this gentleman who promises to marry me. He takes me home to his parents and they warmly welcome me. At 19 with no proper education and no job I feel it is better to get married’. Grace (aged 19)

In a Ugandan cohort study in rural Uganda by Sanitelli et Al. they examined the incidence of HIV infection and risk, they found that social transition such as age of leaving school,  marriage, and marital dissolution made women vulnerable to HIV infection.   Cutler and Lleras-Meney studies show that an additional four years of education lowers five-year mortality by 1.8 %^[8] along with being attributed to a number of other health benefits. The most interesting finding is that higher education levels lead to different thinking and decision making patterns.  When I first met Nancy in 2011, she was 14 years old and at home helping her mother with household chores. For the last 5 years I have supported her financially to return to school and finish her secondary studies. Health wise she has blossomed, catching up her academic gap has been harder, nonetheless she completed her final exams and has just received her results.

Dear Gelise:

How are you? (…) I attained the mean grade of D+ of 28 points, I just thought it was important to inform you of my performance at least for you to be aware of it.

On the other hand I also completed my computer classes and attained a certificate. As for now am just at home  but mostly I  do spend my time at the cybercafe enjoying computers. (…)with lots of love

Nancy (aged 18)

Nancy is  disappointed by her academic performance, but no one can ever take from her those extra years in school, the exposure and maturity she has developed, the knowledge she has gained to make positive life choices.  For young women living with HIV access to education is in my opinion of even greater importance, HIV is no longer a death threat, but until a cure is found it remains a chronic disease, navigating the world around them, career, health and life choices can only be improved if their educational needs have been met. In Nancy’s message she notes the computer classes. Access to further training is also key for girls who’s education attainment is limited, adult training can be as important as school.

‘All I ask for is training on hairdressing.  If I can get  this training I will be able to work and raise my son without being too dependent on people.’  (Kariimi aged 20)

All the girls that provided their stories to me age 9 to 33 had something in common - they all attended a local support group. Lean on me is a Kenyan NGO set up by Maurine Murenga[9] to provide support to young girls living with HIV. When Maurine was first diagnosed she received support, to her it propped her up and was essential in in those early days, it is this same support she wishes to bring to other.

‘I always look forward to going for group therapy sessions at Lean on Me foundation.  This is because I meet other young people like me who are HIV positive and they don’t seem to have trouble being close to me.  I told my mother that she should also join a support group of adults because being in the support group makes someone feel better and they are able to answer many questions and teach us about how to take care of our health.’ Betty (aged 11)

Apart from the obvious social support that group therapy offers, it provides much needed information that all people living with HIV need to make sense of their lives. The NGO are the grassroots civil society organization and are the door to understanding the needs of people living with HIV. In the last five years, the International scientific community has advocated viral testing in monitoring patients on antiretroviral treatments. For much of the last decade, people living with HIV have relied on knowing their CD4 count, although useful, this marker is not a timely reflector of what the virus is doing in the body, and when used as a monitoring tool, opportunities for addressing proper adherence along with preventing treatment failure are being missed. Viral load test detects how much HIV is in the blood, and if treatment is working, very little virus should be found as a result. This information allows clinician an accurate indication of what is happening inside a person's body and act accordingly and thus prevent a treatment failure and avoid the switch to more expensive and higher toxic regimens. In 2013, the World Health Organization Consolidated ARV guidelines[10] included viral load testing over CD4 count in the monitoring of people on antiretroviral treatment (ART).  UNAIDS again reinforced the importance of viral load testing when it published the 90-90-90[11] targets namely the third target in the cascade: ‘By 2020, 90% of all people receiving antiretroviral therapy will have viral suppression’.

I recently questioned Nelson Otwoma on the subject of viral load testing, Nelson is the Executive Director of NEPHAK , Network to Empower People living HIV/Aids in Kenya. He listed the following raisons for the slow uptake of Viral Load testing in Kenya.

• The need to draw blood, which PLHIV are reluctant to do
• Results not being made available in a timely manner and difficult to understand
• Health Care workers not trained in viral load monitoring: when one lady demanded to know her Viral Load, the nurse insisted in knowing why the interest: "Are you adhering to your treatment? Are you planning to get pregnant? Are you not doing well?"
• One adolescent (21 years born and living with HIV), getting a referral may also come with stigma as it is done only for adolescents with poor adherence.

Despite the increase number of interventions funded by International donors it would appear to me that these projects have not responded the psychosocial issues around the person. Living with HIV aids is not just a medical condition, it carries huge social implications, stigma, acceptance.