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'Putting pen to paper' to help children with HIV
“Sick kids need medicine. Please share with them,” Zoia Kallimanis Foster, from New York, read from her letter to pharmaceutical executives and government leaders.
Children from 14 countries have written letters to drug companies and governments, urging them to help children living with HIV/AIDS – through the ‘Prescription for Life’ campaign, launched today on Universal Children’s Day.
They are asking them “to improve testing and treatment for infants and children living with HIV”, estimated to number more than two million in 2007.
Only about 15% of those children get the antiretroviral drugs they need to stay alive.
“Without treatment, nearly a third of HIV-positive infants die by their first birthday, and half of all children born with HIV die before they are two years old,” the Ecumenical Advocacy Alliance says.
The alliance and UN partners held a panel today at the UN headquarters in New York on children with HIV, as well as launching an exhibition of the letters last night at the UN.
“These letters remind us that if children can figure it out, why can’t we?” Canadian Karen Plater, co-chairperson of the Ecumenical Advocacy Alliance’s HIV and AIDS Strategy Group, asked at the exhibit.
I know this is the second “campaign” post this week but, like the Lords of Bling campaign, I think it’s an outstanding initiative.
Kami challenges stigma in Takalani Sesame
Sesame street has been exported to 120 countries which adapt it to their needs. In South Africa one of the stars of Takalani Sesame is healthy, happy Kami – a five-year-old yellow muppet living with HIV.
Her name Kami means “acceptance” and her puppet tackles difficult issues such as loss – in the fifth season last year she mourned her mother’s death – and rejection with courage.
Kami is loved by everyone and her impact on children aged three to five has even been studied by the HSRC.
Most posts will be short but there will be exceptions – and Jo’s story is one.
I’ve written a story for the Sunday Times today about telling children they have HIV. This was prompted by Jo’s (not her real name) testimony.
She has courageously confronted HIV in her own life and her child’s, and they are living healthy and happy lives.
But for 11 years after her son was born, she struggled with how to tell him his status.
This is her account:
Jo wishes she had known she was HIV positive when she was pregnant so that she could have prevented mother-to-child HIV transmission.
“I was 25 years old and this was a planned pregnancy in a stable relationship so my gynae didn’t advise me to take an HIV test. She said I shouldn’t worry about it so I never thought of doing it.”
But Jo realised when her baby was eight months old that something was wrong.
“At the immunisation clinic they told me he wasn’t putting on weight and I went to consult a private paediatrician.
“He advised me to take an HIV test and tested the baby. I was shocked and devastated at the result.”
Her ex-husband, who she believes infected her since he was the first person with whom she had unprotected sex, abandoned them.
Jo was referred a doctor at a government hospital where she met a “very knowledgable and good doctor”.
“He sat me down and counselled me, and I was very lucky to be put on a clinical trial for medication as my medical aid would not pay. At that time in 1999 it was dual therapy.
“We are living testimony that antiretrovirals give you life.
“I’ve never been ill and my child has never been ill apart from common children’s infections like bronchitis,” she says.
Sam (not his real name) has never been admitted to hospital or missed school because of opportunistic infections, which are common among people with HIV not taking the daily tablets.
“But it was hard for him to understand why he was taking medicines when he was not sick and why he could not sleep over at friends (because he needed to take medicines away from curious onlookers) and he felt deprived.”
Jo says she avoided talking about HIV. She would change the topic or switch TV programmes if the topic veared too close to home.
An HIV advertisement flighted for World Aids Day on December 1 ( Don’t give your child HIV. Give your child love) made her heartsore.
Jo says: “I would switch the channel. Of course if I had known my status I would have taken medication and protected my child.”
This is still an urgent issue for thousands of pregnant women in South Africa even today. If they do get tested for HIV, they can protect their unborn babies against the virus as the medication is readily available.
Yet an estimated 60 000 babies every year are still born with HIV.
Jo says she delayed talking to Sam partly because her siblings were so shocked when they found out.
“They did not take it well at all and it was a traumatic experience.
“I had to assure them that I was fine. For them it just meant death.
(Now they understand and are supportive.)
Also what Sam was learning at school about HIV was so negative. “They were sending the wrong messages,” Jo says.
Luckily there was one positive programme on TV about inspiring teenagers with HIV and how they coped.
One morning over the holidays, Sam asked his mother why he needed to take daily medication.
“I wasn’t ready to tell him,” she says.
“But he said: ‘Mummy I’m big now, tell me.’ So I told him we are HIV positive and he said: ‘M-u-m!’
“ He said that he didn’t believe it as he was not sick. He wept, and I counselled him.
“Half an hour later he said that he was fine. I thought we would have a miserable festive season but we had a wonderful Christmas and New Year.”
They celebrated the 2009 New Year together are even closer now than they had been before.
None of her fears about disclosing to her child — shared by thousands of parents and caregivers in South Africa — were realised and she is so happy she told her child.
“You have to tell your child ultimately. They have to know and it is best they know from you.”
Now Jo and her fiance, who is also HIV positive, plan to have a second child and they will be careful to make sure HIV is not passed on.
* For more information on how to disclose to children visit http://www.childrensrightscentre.co.za/site/files/6592/pub1.pdf
