Confronting the problem - Anna & Nell

 Anna: Today started sadly, Clive spoke of someone who called on Saturday to arrange to come for treatment, starting today (Monday). On Sunday, he died. Another person recently flew from Johannesburg for treatment – two days later, he returned. He was too ill, and he too has died. His sister rang Clive to thank him – and she was angry : with her brother, who had learnt that he was HIV+ in 2,000 – and only told her days before his death. Why does this happen? Why are people ill, alone? Simply, stigma. It is cruel, and time we stopped it. Time for us to talk to each other and confess our vulnerabilities, our fears. Time for us to listen. This shame, this judging, is harsh and cruel. Can we use our power, can we be brave, and talk? Can we stay connected to people when they are HIV+, when they show us our own fear? Nell continues:

Nell: The stigma surrounding HIV means that, unfortunately, this is not uncommon. People are unwilling to talk about it and makes it much harder to get accurate information out. In 2008 the Human Sciences Research Council surveyed over 20,000 people in South Africa about HIV. 15 - 49yr olds were asked whether "To prevent HIV infection, a condom must be used for every round of sex" and "One can reduce the risk of HIV by having fewer sexual partners" were factual statements. Only 44.8% knew both were true, down from 64.4% in 2003. 15 - 24yr olds were also asked to identify if "There is a cure for AIDS", "AIDS is cured by having sex with a virgin", "AIDS is caused by witchcraft" and "HIV causes AIDS" were factual. Only 28.7% were able to identify the false statements.1 Despite increasing government and international funding, the amount of people with accurate knowledge is actually decreasing. Is it any wonder that in absence of this basic information people come up with their own theories?

Misinformation about the way HIV spreads can make telling those close to you difficult, as some people believe HIV can be spread through sharing plates or sheets, or even by casual contact.2 Many in South Africa believe HIV is exclusively the result of promiscuity or sex work. are responsible and those who try and work to raise awareness about condoms are criticised for promoting reckless behaviour. Some with HIV speak of being thrown out by their families, who feared they would somehow become infected through co-habitation. (Anna: There is a clip in Michaela’s film, the Starfish principle, in which Michaela asks Michele, a young dying mother, whether she knows anyone else who is HIV positive. “No” she says, sincerely. She was heartbreakingly alone And yet, statistically, there must have been many in her community.)

Women have particular problems dealing with HIV stigma. Women are disproportionately affected by HIV, and women in their twenties are twice as likely to be infected as men of the same age.1 Women who marry early on are usually virgins and their husbands will often already be HIV positive or contract it from extramarital affairs. Admitting their status is seen as accusing their husbands and some women report domestic violence after being diagnosed.2 Violence against women in South Africa is very wide spread, 25% percent of men admit having committed rape at least once in their lives and women are more likely to be raped than to learn how to read.6 No wonder it is so hard to spread accurate information about HIV. South Africans often speak of there being an attitude of man's entitlement to sex, particularly in Zulu communities. Sex is thought of as a man's right and the consent of the woman is not considered. So women who are infected through rape are still likely to be perceived as promiscuous and somehow deserving of the virus. Men who commit rape are twice as likely to be HIV positive as those who don't so this is a particular worry for many women.8 One particularly harmful myth is that sex with a virgin can cure an HIV positive man. In South Africa from 1992 - 2002 there was a 400% reported increase in sexual violence against children and 25% of girls are raped before the age of 16.7

One less talked about aspect of HIV stigma is the way people censor themselves. People often shut themselves of from their communities and friends for fear of revealing anything. In the early 2000's a study of 144 HIV patients at two Johannesburg hospitals found that 38% had not told any of their family that they had HIV.2 To a young person the news that they are HIV positive means a lifetime of safe sex and not being able to have children without endangering their sexual partner and possibly child: around 70,000 HIV positive babies are born every year in South Africa, despite mother to child transmission being medically simple to prevent.5

When I try to imagine what it must be like for a South African finding out you are HIV positive, it seems as if there are no areas of your life that are unchanged. I wonder what I would do, if I found out I was infected, but was scared to tell my family in case they disowned me, scared to seek treatment in case someone found out and I would be ostracised. I can very easily see how people don't try and receive treatment until they are seriously ill. From a Western perspective, it's hard to imagine the preventative effects of condoms not being common knowledge and it's awful for me to think how many lives have been lost simply because people don't know how to protect themselves. I can't imagine the constant threat of rape women face, and the very real possibility they will contract HIV if they are attacked. I think living with HIV, if you're not part of a supportive community which so few people are, must be a very scary, lonely way of living.

People often choose not to get tested rather than face the possibility they have HIV and often don't find out until they are seriously ill, and sometimes too ill to be greatly aided by drugs.3 TB is the biggest killer in Africa, mainly because people with weakened immune systems are particularly susceptible to it and often it's only when being treated for TB that HIV is diagnosed. South Africa accounts for 0.7% of the worlds population but 28% of people with both HIV and TB.6 Treating HIV and TB at the same time can be difficult because the toxicities of some of the drugs overlap, people need to be on ARVs in the long term so doctors have to treat the TB first and hope the HIV does not worsen to much before it can be treated.9 Health workers in South Africa say some people claim they cannot be infected, that HIV affects only prostitutes. There are stories of workers in South Africa, child minders and waiters, being sacked or moved to positions away from the public once their status is found out.4 Stigma about HIV is founded in misinformation and fear. HIV has had an incredibly destructive effect on communities in South Africa. Reinforcing their own beliefs that only the deserving become HIV positive allows people a feeling of safety, that it's something that happens to other people. But it's precisely these attitudes of it being something that cannot affect you that leads people to make themselves vulnerable to HIV infection. The most common method of transmission in South Africa is heterosexual sex, and consistently educating people is the only way any meaningful change is going to be realised.

There is a clip Anna showed me - it's been featured on the blog before, but well worth a revisit - of Aleana speaking in Durban. Aleana Adams is an English woman who was diagnosed HIV positive in the 1980's, when HIV was a death sentence. She successfully managed her condition with ARVs for over 20 years and was treated with EMF by HIVEX last July. (This was documented in earlier blog entries, for newcomers.) She manages to speak about her life and experience of HIV with such calmness, and manges to disclose her status to a room of people without any element of fear. Anna assures me she's just as "larger than life" in person, and I hope I may be able to meet her one day.

http://www.youtube.com/watch?v=RO8VKnnUqEs&feature=player_embedded

1 http://www.mrc.ac.za/pressreleases/2009/sanat.pdf
2http://www.washingtonpost.com/wp-dyn/articles/A7822-2005Jan13.html
3http://ipsnews.net/news.asp?idnews=49904
4http://allafrica.com/stories/201012010250.html
5http://www.voanews.com/english/news/africa/South-Africa-Tackles-Prevention-of-Mother-to-Child-HIV-Transmission-97580599.html
6http://www.avert.org/aidssouthafrica.htm#contentTable5
7http://news.bbc.co.uk/1/hi/1909220.stm
8http://www.guardian.co.uk/world/2009/jun/17/south-africa-rape-survey
9http://www.bhiva.org/documents/Guidelines/Treatment%20Guidelines/Current/TreatmentGuidelines2009.pdf