More than 1.5 million people in Kenya are living with HIV/AIDS. 3 out of 5 HIV-infected Kenyans are female. 1.2 million Kenyan children have been orphaned by AIDS. Some areas of Western Kenya have infection rates of 30%…
Everyone in the West knows something about HIV/AIDS. Everyone knows roughly how it is transmitted, and that there is no cure. Everyone knows that it affects Africa disproportionately. Most people, I’d guess, are terrified of it. But most think it won’t happen to them; not where they come from.
And they’re right – it probably won’t. So when they read statistics about the scale and impact of HIV/AIDS, they might think how awful it is, but move on. HIV/AIDS, like famines, war and tribal conflict, has somehow come to characterise the ‘Dark Continent’. Many of the positive stories coming out of Africa never reach the West, so people see the continent as forever blighted, unchanging and unchangeable – and who can blame them for switching off?
But what happens when you are forced to confront HIV/AIDS? When you live in a country where 6.3% of the population are estimated to have the virus? Where, although the prevalence rate has halved from its peak in 2000, HIV/AIDS is still considered the most significant non-political threat to that country’s development?
Not only am I living in a country where HIV/AIDS is a huge issue, I work at an NGO which provides treatment and support to those affected by it, and whose requisite for employment used to be having HIV rather than skills. Before moving to Kenya, I had never knowingly come into contact with someone who has HIV/AIDS. During my previous travels in East Africa, I had a notion that statistically, it was likely that some people I came in contact with had it – but it wasn’t something I was conscious of. I’d never talked to anyone about having HIV, and had never had a relationship of any kind with someone with it, be it friend, acquaintance or colleague.
But now, I work with some incredible people who have stood up and openly declared themselves to be HIV positive, when probably the normal – and safest – reaction would have been to keep their heads down, take the drugs and not talk about it publicly. They introduce themselves as HIV positive. They discuss it openly. They take their pills while talking to me over chai. But most importantly, they look completely healthy and have energy, enthusiasm and successful careers. They tell people because they want to set an example (our Executive Director has been HIV positive for 20 years, and seems fit as a fiddle), and they want to educate people. Most days I forget that the majority of my colleagues have a life-threatening condition.
There are a lot of stories about HIV/AIDS activists, but what is often forgotten is the very real and personal decisions they made and the sacrifices these came with. If I was diagnosed with HIV, I’m not sure I would be brave enough to openly declare it, despite the positive publicity that it might bring to fighting the disease. For now, I’m proud to be working for an NGO dedicated to fighting the cause, where I can learn from people who are open about their status.
So is this a sign of how far things have come in Kenya? Have negative attitudes declined to the extent that people feel comfortable disclosing their status? Has access to healthcare increased? Or have things only improved for the educated, those who know their rights and how to fight for them?
I wanted someone with HIV to give me their view. I asked Teresia. Teresia is a counsellor and an advocate for both maternal and new born child health, and for women’s rights, and has worked with policy makers in Kenya, South Africa and Washington D.C. She’s also my favourite colleague.
Teresia
In 2002, Teresia started feeling weak and coughing. She was diagnosed with Tuberculosis and doctors recommended she take an HIV test. TB is an ‘Opportunistic Infection’: it is OIs such as this and pneumonia which kill those with HIV/AIDS: 50% of people with TB in Kenya are estimated to have HIV.
Teresia tested HIV positive, with a CD4 count of 10 (HIV attacks these CD4s, a type of white blood cell). This was shocking, given that a healthy person normally has a CD4 count of around 1000-1500, and she was hospitalised. Her husband, after a ‘false positive’, tested HIV negative.
She was put on TB medication for two months, but not ARV (Anti-Retroviral – HIV) treatment, for several reasons. Firstly, if a patient has not yet started ARVs, they must finish the course of TB medication. Secondly, ARVs were not readily available in 2002, only found in private clinics at a cost of KSH60,000 a month [around £430]: prohibitively expensive to most people in Kenya. Thirdly, free ARVs were only given to people on ‘programs’, especially the Preventing Mother to Child Transmission program. Although Teresia had a one year old son, she was not pregnant, so didn’t qualify for help.
She was finally able to start ARVs at the end of 2003, when the Government had subsidised them: KSH3,500 a month [£25] was a price her husband could afford. Today, Teresia takes three pills in the morning and four in the evening. She’s now on her ninth year on medication and feels perfectly healthy, with no side effects from her current drugs. She attends ‘clinic day’ every two months to collect more ARVs, and has a CD4 count test every six months.
Progress
Teresia thinks Kenya has come far in HIV treatment since she was diagnosed. In 2002, treatment was only offered in private and main Government clinics; now, almost every health centre and most communities in rural areas have access to it. The amount of funding that has come into Kenya, mostly from foreign donors, has meant that a huge – some would say parallel – health system for those living with HIV/AIDS has been constructed, which the Government has recently said it wishes to integrate into mainstream healthcare. The price of ARVs has reduced from KSH60,000 a month to 3,500, then 500, and now nothing, which has resulted in a 29% decrease in the number of AIDS deaths over the last seven years. There are still costs involved, though, which makes diagnosis and treatment prohibitive for many – the HIV test costs KSH1,500 [£12] in some areas, and liver function tests cost around KSH2,000. In some areas, testing equipment is not even available, and diagnosis is done by clinical monitoring.
But a major problem, Teresia fears, is access to food. HIV/AIDS often makes people nauseous and therefore less likely to eat food, yet it increases the number of calories they need and therefore makes them hungry. Food prices have rocketed in the last few months, making it very difficult for some to eat a balanced diet. If those with HIV/AIDS don’t get the nutrients they need, they feel hungry and weak and stop taking their ARVs. If they stop, they might not be able restart the same drugs, and might therefore have to progress onto ‘second line’ treatment, which restricts the diet even more and is more expensive. Resistance to ARVs is one of the biggest worries facing countries like Kenya, where many people should be moved to ‘second line’, but the country cannot afford it. Teresia feels lucky that she can afford three meals a day, and is still on ‘first line’ treatment, but is well aware that many cannot.
Stigma
But on to one of the aspects of HIV/AIDS in Kenya which confuses me most. In a country where the prevalence is so high, where almost every city suburb has a purple ‘VCT’ sign announcing Voluntary Counselling and Testing, and where almost every rural community centre has HIV/AIDS campaign posters plastered over its walls – in short, in a country where no one can truly say they are untouched by the virus – stigma and discrimination towards those living with HIV/AIDS is still rife.
Teresia says that back in 2002, stigma was terrible. Many HIV positive women were disinherited of their matrimonial property and their rights violated. Teresia didn’t reveal her own status for a long time: she only felt able to tell her sister three years after knowing, and her other sister and some friends later.
Neither did she tell anyone in her religion – she is a Jehovah’s Witness – at first. The people she eventually confided in were ‘generally’ supportive, although some told others who wouldn’t even greet her. She finally told the elders, who now send to her people whom they suspect of having HIV. (Interestingly, Teresia claims her faith never wavered. In fact, she believes it was faith that made her survive with HIV for such a long time, and she feels she has even more reason to trust in God).
Things are very different for Teresia now – she feels able to tell people that she’s HIV positive. But perhaps she is able to do this because of the support she gets from our organisation, from her husband (whom she gave the option of divorcing, but he refused), and from her friends and family. She is also educated and both she and her husband bring in money.
But what about other people living with and affected by HIV/AIDS? People who don’t have such supportive and understanding networks, and people who are not as educated, don’t have an income and don’t have access to information?
Teresia agrees that stigma is still bad, particularly in rural areas, where there is less education, despite 70% of infections being found there. In Sega, Western province, there is a tradition of women cooking at funerals. HIV positive women are not allowed to participate in this activity because of fears that their sweat will fall into the food and transmit the virus. If a woman is not involved in social activities like this, she is ostracised from her community.
Still in Kenya, widows are often blamed for their husbands’ deaths, even though you can bet it was the husband who contracted the virus from someone else. A young woman came to the office one day, having been thrown out of the house by her stepmother when she revealed she had the virus. There is the belief that a HIV positive woman should not give birth: attending various training sessions for work, I’ve learnt that health workers can be judgemental of women who are HIV positive and pregnant. Children, too, are punished. A friend explained how her sister died of AIDS, leaving behind an HIV positive little girl. My friend informed the school of her status, and later discovered that the teachers were either avoiding her or verbally abusing her, and the children were encouraged to taunt her. She withdrew her niece and enrolled her in another school – where her status remains undisclosed.
Increased access to HIV treatment has seen people with HIV/AIDS rise up from their deathbeds to become healthy, productive citizens; the Government has been taking the epidemic seriously in recent years; and key institutions like the Church are now involved in the fight (the Evangelical Alliance of Kenya is even running a Most-At-Risk-Person’s programme that targets sex workers and men who have sex with men) – and yet, although research has shown these approaches reduce stigma, it still remains. Why is something that seems to be so much the norm still so much feared, and why are those that have it still labelled and discriminated against? Why is something that no longer causes widespread death still seen as taboo?
One reason could be fear: of a virus that strikes people in their prime; a disease that many still believe to be a death sentence. Another is cultural. Because it is mainly transmitted sexually, HIV/AIDS brings up issues of sex and morality in a conservative country. People living with it are often seen as shameful, and the virus seen as ‘punishment’ for amoral behaviours. Also, perhaps it still carries stigma because it is a symbol of disorder; the latest in a long line of things that have created social upheaval and suppressed the continent.
Then again, why should stigma disappear overnight? HIV/AIDS is a relatively new disease, the Government has only formally acknowledged it for the last twenty years, and people with the virus have only started living full lives in the last ten. This, bound up with the complex cultural reasons for stigma and the fact that it really is a frightening disease if left untreated, means that stigma will take time to disappear. But people are hopeful. One doctor told me she believes that in future, HIV/AIDS will be seen as a manageable condition, like diabetes, with no more negative attitudes to the patient than accompany that disease.
What does the future look like?
The issues of stigma, access to food and drug resistance are pressing in Kenya. But there is also the issue of funding. Teresia fears that Kenya is sitting on a time bomb, due to its reliance on ever-decreasing donor funding. Global Fund and PEPFAR (USAID) currently fund 90% of ARVs in Kenya, but this is unsustainable. The Kenyan Government must act now, Teresia says, to invest in medication: while 400,000 people are on ARVs, a further 420,000 are on the waiting list – and this doesn’t account for those who have not accessed services, or even been tested.
Teresia thinks the Government also needs to change its strategy on the prevention message, to change peoples’ behaviour and stop new infections. She is counselling people who tested negative last year and were given plenty of information, but this year have contracted HIV, and she cannot understand why this is happening.
Teresia says that personal determination to fight stigma and motivation to live for her child kept her going when she was diagnosed. Now, ten years on, she is passionate about bringing change: increasing access to HIV treatment and fighting to end new infections, stigma, discrimination and violation of rights. We in the West should support her in that.
Sources:
http://www.avert.org/hiv-aids-kenya.htm
International Monetary Fund, Kenya: Poverty Reduction Strategy Paper, July 2010
Kenya National AIDS Control Council, Kenya Analysis of HIV Prevention Response and Modes of HIV Transmission Study, 2009
Kenya National HIV and AIDS National Strategic Plan for 2009/10–2012/13
UNAIDS, Report on the Global AIDS Epidemic, 2010
UNGASS, Country Report: Kenya, 2008
Hey Aurelia, thanks for posting this blog. Working as an HIV social worker in London 1997-2000, predominantly with people from sub suharan Africa, many of the issues you raise here around stigma and fear of disclosure are the ones that dominated people’s lives, particularly for those who also had HIV+ children.
Like you, I was fortunate enought to work with some fantastic women and one from Zaire (as was) told me they used to call it the ‘skinny’ disease which is often how people guessed or suspected you were HIV+. So, while It’s great Kenya has come such a long way in combatting HIV and raising awareness, it seems the stigma associated with the disease persists.
It’s easy to forget living in the west, where HIV has become more of a ‘manageable’ disease that for the majority of people living with HIV this isn’t the case. Good job in reminding of us of that.
All the best
Jacquie
Well written Aurelia – conveys things here and in WOFAK really well and held my interest thoughout, even though I was in the same room when you interviewed Teresa!! WHat can we do whilst we are still here to get the Government in Kenya to wake up to their responsibilities to their HIV + citizens???
Ruth
Really moving article, hon, well done. xxx
I have found all your blogs really interesting and fascinating. This one was particularly relevant to me as a doctor as it reminds me how medical problems affect not just the physical but the emotional and spiritual too.
In the west HIV is being seen more and more as a chronic disease just like heart disease or diabetes which can be managed but not cured.
I’ve yet to try the ” chicken on the head” test of cure for malaria!!
Ann