Charlotte's Web

Blogging my world since 2006


World AIDS Day, 1 December 2013

The first time AIDS crossed my radar was in 1985, when I read this edition of Time magazine. People were dying of a virus and nobody knew why. It was terrifying; a plague. I had my first HIV test at university and then later in the UK when I was pregnant with my first child. I was, mercifully, HIV-free but for millions of people the experience of being tested has a different outcome.

Getting up the courage to have the test is one thing (brilliantly documented in Jonny Steinberg’s book Sizwe’s Test), but living with HIV – even in this world of anti-retrovirals – takes another kind of courage.

In his memoir Aidsafari, South African journalist Adam Levin talks about how, when he tested positive in 2003, he experienced life-threatening opportunistic infections and debilitating side-effects from the medication, was bedridden for months, tortured by nerve pains in his feet, lost his hair and teeth, required dentures at 35, had TB and cancer. It is a deeply moving book.

Imagine suffering as he did, but in poverty – in a home without electricity or running water and without access to medical care.

Despite having the world’s biggest HIV treatment programme in the world – 2.4 million people on drugs – South Africa is only treating a third of them. Four million people still don’t have access to treatment. At least one in five treatment facilities or clinics have run out of HIV or TB drugs.

AIDS has not gone away. We might be getting closer to a vaccine, but that is cold comfort to people already infected with the virus, who through poverty can’t access treatment or whose local clinic has run out of drugs.

The theme of World AIDS Day 2013 is Shared Responsibility: Strengthening Results for an AIDS-Free Generation. The virus began one person at a time, and we can end it one person at time. Let’s think about ways we can each take steps to stop HIV – we can find a local AIDS organisation and donate, we can talk about AIDS to our children, we can read up about HIV to beat the myth that it has been dealt with. I did a quiz and discovered that despite all my research into HIV/AIDS, I still know very little. Self-education helps!

In the name of learning more, I have collected some blog posts and news articles more eloquent than mine on the topic of HIV/AIDS:

We can end AIDS without a cure

Too many being left behind in AIDS fight

World AIDS Day: No time for complacency

Still here and still fighting – AmeriNZ blog for World AIDS Day

Thanksgiving and World AIDS Day

The sangoma who lives for science

If you have written a blog post to mark World AIDS Day 2013 or stumbled across a post you like, let me know and I will link to it from here.

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World AIDS Day: Some Things I Found

It’s World AIDS Day today. I come from South Africa, a country where 4.85% of adults are HIV positive and where 1.7 million people are on ARV treatment. There are 1.9 million AIDS orphans in South Africa.

My novel, Balthasar’s Gift, centres on the murder of an AIDS activist. While discrimination is receding, and people who need treatment are starting to get treatment, South Africa still has a long way to go.

I alway focus on World AIDS Day here at Charlotte’s Web. Here are some things I found that show the changing face of HIV/AIDS:

Dating when you’re HIV positive

Portraits of people with HIV

10 Things We’ve Learned about HIV/AIDS

Clinton Releases Blueprint for AIDS-free Generation

HIV: Film tells survivors’ stories

HIV prevalence falls in sub-Saharan Africa, but is still higher than anywhere else

Orphaned at the ages of 6 and 7, Tandeka and Njabulo have looked after each other for 10 years. Their teacher is also an AIDS orphan.

Mother to child transmission reduces in South Africa, but the costs are hard to cover

South Africa: From Crisis to Catastrophe

South Africa: HIV drugs increase life expectancy by five years

Story of a Survivor

When the need is so great, it is hard to choose where or how to help. I support the Noah Community, which empowers communities in South Africa with the knowledge, skills, strategies and self-confidence needed to create and run organisations that support the well-being of their vulnerable children. These organisations are networks, not buildings, although most do have a resource centre. These centres have staff and provide additional programmes for vulnerable children such as daycare, aftercare, child protection and bereavement counseling.

If you have a World AIDS Day post, let me know and I will link to it here.

Here are some of my previous World AIDS Day posts.


World AIDS Day 2011: Are There Any Good News Stories?

The theme of today’s World AIDS Day is ‘Getting to Zero’ (zero new infections; zero discrimination; zero AIDS-related deaths)’. While we all know that the statistics are devastating and sad, and that we are a long way from zero, we are slowly winning the fight against HIV/AIDS. I tried to hunt down some good news stories.

Here is a sample:

Masai Cricket Warriors integrate HIV/AIDS awareness into their coaching.

Sisters in science research an AIDS vaccine (see page 14)

UNAIDS report for 2011 showed fewer infections, fewer people dying of AIDS-related diseases, more people living with HIV/AIDS.

ARVs are getting cheaper, so that governments like South Africa’s can scale up their treatment campaigns.

Is the HIV/AIDS pandemic at the tipping point?

Longevity studies show that people with HIV/AIDS on courses of ARVs can live almost as long as people without HIV/AIDS.

South Africa launches an AIDS treatment plan that aims to raise the number of people on treatment from one to three million.

Play the Avert HIV/AIDS Challenge and find out how much you know about the virus. Let me know if you guessed the question about North America correctly or not – that one was a surprise.

Read my review of a beautiful book, The Gifts of the Body, about a home-care worker who visits and treats people with AIDS. This is the best story about AIDS that I have ever read. I first posted it for World AIDS Day 2008, but I am reposting it in honour of the millions of carers who work tirelessly with people with AIDS to make their lives better – the grandmothers whose children have died and who now find themselves parents to a second generation, the community workers, the children who nurse their dying parents. These are the unsung heroes of HIV/AIDS and I want to recognise them.

In order to do so, I have been collecting donations at work and today we will give €450 to Noah’s Orphans, a community organisation which cares for children orphaned by HIV/AIDS in my home province of KwaZulu-Natal, South Africa.

AIDS Day posts from around the world:

Johns Hopkins University, USA ‘We are all unprotected’

83 to infinity, Canada Will AIDS ever be a memory?

BBC World Service Trust, India Being the face of HIV in India

Age UK, HIV and older people

Reluctant Mom, South Africa Talking to your kids about HIV/AIDS

If you have a post in honour of World AIDS Day, let me know and I will link to it here.


Reading about AIDS

Today is World AIDS Day. Around the world, landmarks are being lit red, celebrities are turning off their Twitter streams and hundreds and thousands of people are renewing their commitment to universal access and human rights.

My home country, South Africa, has the highest number of people living with HIV/AIDS in the world. It seemed natural to me, when I started writing a novel three years ago, that I would somehow try to address this. So soon after we had achieved freedom from the ugly strictures of apartheid, we were struggling with a disease that seemed to target the poor – the very people who had suffered during apartheid.

During the process of writing Balthasar’s Gift, I did a lot of reading around the topic of HIV/AIDS and today, on World AIDS Day 2010, I’d like to recommend some of the books I read.

The shortest and most moving book was Rebecca Brown’s The Gifts of the Body, which I reviewed here. Brown is a former home-care worker and her compassion for the dying and unstinting generosity in meeting people’s needs was astonishing to experience. When reading about AIDS, we are beset by statistics that are huge and difficult to digest, and what Brown does is to take it down to the individual level. Her unstinting compassion shines through. I was inspired by this book to create two characters who are homecare workers and who understand the need to relate to people not as statistics but as whole human beings, who still feel, think and dream.

Another book that moved me deeply was Edwin Cameron’s Witness to AIDS, which I reviewed here. Cameron, a Constitutional Court judge in South Africa, is gay and living with HIV. In 1999, he went public with his HIV status – only a year after 36-year-old Gugu Dlamini was stoned and stabbed to death after publically declaring on Zulu-language radio that she had the virus. Witness to AIDS is part autobiography, part analysis and is gripping. AIDS disclosure is becoming less of an issue in South Africa, but in 2000, when my novel is set, it was still an incendiary issue and I centred the book around it.

I also read and reviewed Sizwe’s Test, by South African journalist Jonny Steinberg. What Steinberg does is to follow two people – spaza shop owner Sizwe Magadla and Médecins Sans Frontières (MSF) doctor Hermann Reuter – during a two-year period in which the former tries to decide whether to test for AIDS or not, and the latter does his utmost to provide AIDS testing and treatment in Lusikisiki, one of South Africa’s poorest and most remote districts. What Steinberg does so well is to empathise with both men and the adversity that they face, so that, as a reader, I understood both Sizwe’s intricate cultural difficulties with acknowledging AIDS and Hermann’s Herculean challenge in ensuring adequate services for the poverty-stricken people of Lusikisiki. This book helped me to see how having HIV/AIDS is tightly tied  up with people’s ideas of masculinity, and that to test, and to admit HIV status was, and still is for some men, testament to undermining that masculinity.

These were my top three reads, and I can strongly recommend them. Four other excellent books were:

AIDSAFARI: A Memoir of My Journey with AIDS by Adam Levin. Levin is a South African journalist and his book takes us through the daily trials of living with AIDS. It is beautifully and amusingly written.

The Virus, Vitamins and Vegetables by Kerry Cullinan and Anso Thom. This takes the reader down the rabbit hole of AIDS denialism, thankfully now on the wane in South Africa. AIDS denialism is one of the themes of the novel and I used this book to understand why an entire administration could deny the link between HIV and AIDS and question the viability of antiretrovirals.

Illness as Metaphor and AIDS and Its Metaphors, by Susan Sonntag. Passionate and moving, these two great essays gave me insight into the mythology we create around disease, which can distort the truth about illness and isolate the patient.

When Bodies Remember by Didier Fassin. This is an academic book that sets out to demonstrate how the history of colonization, domination and segregation still vividly affects today’s South Africa, most specifically with regard to treatment or the lack of it.

Do you have a World AIDS post? If so, let me know I will link to it here.

For every comment I receive on this post today, I will be making a donation to AVERT, the international HIV and AIDS prevention charity. If you would like to make a donation yourself, just click on the blue and white  ‘Stop AIDS in Children’ button on my sidebar.


South Africa: Drugs for HIV+ Babies

According to a report from the BBC, South African president Jacob Zuma announced today, World AIDS Day, that his government would provide all HIV-positive babies under the age of one with antiretrovirals. He also promised that the drugs would become more widely available to children and pregnant women. Zuma said in his speech at the Pretoria Showgrounds that he was preparing to take an AIDS test himself. He urged everyone to test.

While this may seem a drop in the proverbial ocean, it is also an urgent and imperative about-face from a government that ignored AIDS for too long. A decade of denialism has cost hundreds of thousands of South Africans their lives. It is estimated that by 2015, 5.7 million children – a third of South Africa’s children – will have lost one or both parents to AIDS. There are currently 1.4 million AIDS orphans in the country. I read a blog run by orphan careworkers. Go and see the faces. These are the children who no longer have parents because the South African government acted too slowly to contain the epidemic.

Zuma’s announcement is a positive change, say AIDS activists Treatment Action Campaign. Let’s hope so. Let’s see the South African government save lives instead of waste them.

ETA: Times Live journalist, the very excellent Claire Keeton says World AIDS Day 2009 in South Africa was “an historic event”.


Breaking the Silence

One of South Africa’s most senior and eminent businesspeople, Clem Sunter, writes movingly of the AIDS crisis in News24:

We recently witnessed the huge coverage given to the Air France Airbus that crashed into the Atlantic Ocean. Two hundred and twenty-eight people perished in that disaster. Putting our Aids statistics into perspective, the equivalent is four airliners full of mostly young South Africans plunging into the sea every day of every month of every year. And yet silence accompanies their death because they die individually and the majority are from deprived backgrounds.

We should be ashamed and we should do everything to break the sound of silence. We should talk openly about ways to change sexual behaviour to minimise transmission of the virus. We should get the advertising agencies involved since it is their speciality to change behaviour. We should encourage people to get themselves tested and if they test positive seek the appropriate medical treatment. We should focus on compliance with the pill regimen and the fact that even when you feel better you can’t stop taking the pills.

Finally we should openly praise all those heroes and heroines who have dedicated their lives to caring for the victims of the epidemic. They deserve national medals for their bravery and compassion.

(My emphasis.)

Four planes a day crashing into the sea, four planes a day, filled with young people who should be economically active, taking care of their children and their parents and living life. It’s hard to stomach, which is why people don’t talk about it, but it is a tragedy on a giant scale – and one which will come to haunt the South African politicians who messed about for too long toying with dissident science and refusing to commit to providing people with the drugs.

It is easier to mourn one plane than many, as we harden ourselves to horror and stop hearing it. One of the things I’m trying to do in the book I’m writing is to show how AIDS has become a fact of life in South Africa, but how, at the same time, it is a deeply personal and excruciating tragedy for those who die and those who are left behind. Each story is worth telling.


Good News about AIDS

The BBC reports that HIV/AIDS in South Africa has “leveled off” in the age group two years and older. There are signs that the rate of infection in children and teens is falling. A study by Dr Olive Shishana, former Director General of the Health Department and who now heads up the SA Human Sciences and Research Council’s national research programme on the social aspects of HIV and AIDS, shows that increased condom use amongst the young has led to falling infection rates.

This indeed cause for cautious celebration.

But let’s not forget that those who are worst affected are women between the ages of 20 and 34. In this age range, 33% are HIV carriers. THIRTY-THREE PERCENT.

It’s time for the men of this generation to look to the teenagers, learn from them and start wearing condoms. Be a man; don’t spread HIV.