The price of a life - Clive

As the HIVEX treatment in Durban moves towards its second anniversary in
September 2012, two issues fall into our spotlight. Firstly the need to
treat children living with HIV and especially children orphaned by Aids.
HIV affects a child's physical development and secondly, often creates
learning disabilities which seem to disappear after this treatment.
Unless urgent attention is given to these affected children, we are
going to harbour extreme social problems for the future.

The second pressing issue is mothers infected with HIV. If these mothers
succumb to the illness, we will undoubtedly witness a burgeoning orphan
problem. The question that then needs to be raised:  Who is going to
care for this increasing stream of orphaned children?

Children treated by HIVEX outside their home

As part of an initiative to address the second issue, we have been in
discussion with a large NGO catering to the needs of a huge group of
South African rural women. HIVEX offered to start a free treatment
programme for their membership who were infected with HIV. These women
need to be kept alive and restored to a position where they can
effectively look after their young families. It makes sense to keep
mothers alive to prevent the further increase in the number of orphans.

Our offer for treatment was made which was welcomed by the leadership of
the NGO. It then transpired that none of these affected women want to
come for treatment, for fear that their restored health might jeopardise
their ability to claim State disability grants. Furthermore, we discover
that many of these women who are receiving life-saving medication from
Government, are not taking their anti-retrovirals for the same warped
reason. These rural women are from achingly poor communities where
unemployment is rife. They survive on their disability grants and elect
poor health as a means of ensuring this flow of financial support.

Houses in a township near Durban

Whilst the disability grant is commendable as a source of limited income
for these poverty stricken people, it is actively encouraging the
maintenance of ill-health which will undoubtedly lead to an ongoing flow
of new orphans in communities that are already stretched for resources.
These well-intentioned disability grants are causing a terrible
distortion in the societies that they serve and create the framework for
an explosion of new orphans going forward. This is also leading to
costly medication being wasted.

The time has come to visit real solutions to extreme problems. Failure
to do so is only going to propagate even bigger social problems in the
future. HIVEX is committed to being part of overall workable solutions.
Furthermore, we call on the national leadership to review policies
around HIV that might be encouraging ongoing suffering and a breakdown
in the social fabric.

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

Another Persective - Nell and Anna

Recently, Anna and I spoke to a supporter of HIVEX in Nigeria. Although everyone involved is very happy we're working in South Africa, it's difficult to hear about areas we're not working with. We hope that one day there will be machines across all of Africa and the rest of the world. The man we spoke is HIV positive and look after AIDS orphans. He is currently working with a project mapping HIV incidence across Nigeria. Several things he said were fascinating and made it clear there are many reasons why the treatment HIV is so problematic in Africa.

The official numbers for HIV infection rates in Nigeria are around 3% and with such a large population that means over 3 million people are infected. But these estimates come from flawed testing techniques. In 2007 3% of medical facilities had HIV testing and in 2009 there was one testing unit for every 53,000 Nigerians. Our friend said in his experience 75% of people have no idea of their status and he put the infection rate closer to 25%, going up to 60% in the western parts of Nigeria. Approximately 80-95% of HIV infections in Nigeria are a result of heterosexual sex and between 2006 and 2009 contraception was only used by 14.7% of the population. Educating people about contraception can be very difficult because of societal attitudes: in 2001 a radio advertisement for condoms was suspended: on the basis that suggesting using a condom would make pre-martial sex acceptable behaviour. Since then there have been more successful campaigns, including texting people information and using the image Femi Kuti, the son of famous Nigerian musician Fela Kuti, who died from AIDS-related illness in 1997.



You can't tell who has AIDS by looking at them,
please protect yourself

Recently the cost of living in Nigeria has increased dramatically, I was told even the middle classes are struggling. Nigeria has a very young population, in 2009 it was reported 42% of the population were under the age of 15 Nigeria and since 1991 the age expectancy has fallen from 54 for women and 53 for men to 48 and 46 respectively. There are around 2,500,000 AIDS orphans under 18 and the recent economic difficulties have lead to a rise of young people going into prostitution and exposing themselves to HIV. In North Western Nigeria around 50% of girls are married by the time they are 15 and 80% of girls are married by the time they are 18. This is problematic not just because their husbands are often much older and more likely to be HIV positive, but studies have shown young women are much less likely to have accurate knowledge about HIV. In 2009 only 25% of men and women between the ages of 15 and 24 correctly identified ways to prevent sexual transmission of HIV and rejected major misconceptions about HIV transmission.

The man I spoke with said intravenous drug use was another factor in the spread of HIV and estimated there are around 1.8 million drug users in Nigeria. Only 25% of intravenous drug users know that HIV can be transmitted through shared needles. The problem is especially difficult to tackle as drug smuggling exists at an institutionalised level. Nigerian gangs across the world control 90% of the world's heroin and last year a Nigerian politician was arrested at Lagos airport attempting to board a flight smuggling 4.4lbs of cocaine. It's thought he was hoping to sell it to pay for his election campaign.

Seeing the struggles in his Nigeria has only made the man I spoke to more passionate about the cause. He wants to study HIV in more depth and work on ways he can better help his country. He spoke of a method called “Education through listening” which tries to better communities by encouraging them to work together for solutions rather than forcing strategies on them. He sounded very hopeful for the future and I hope we'll be able to work with him one day.



Fela Kuti performing in 1980

A note from Anna

Fela Kuti was a fascinating character. I would have loved to have met him. His music and his life reflected his beliefs, and, at a time when there was no knowledge of HIV / AIDS he had many wives, once marrying 27 of his singers and dancers. He exposed corruption, fired up Africa with his song Zombie, about military rule, and ran for President. I would like such energy backing us… here, dancing, not playing, interviewed by Ginger Baker http://www.youtube.com/watch?v=p-SQH94Pifc&feature=related]

We got information for this blog from these sources
http://data.un.org/CountryProfile.aspx?crName=NIGERIA#Summary

http://www.avert.org/aids-nigeria.htm

http://news.bbc.co.uk/1/hi/world/africa/8688550.stm

http://www.harmreductionjournal.com/content/6/1/24

http://en.wikipedia.org/wiki/Nigeria

http://www.unaids.org/en/Regionscountries/Countries/Nigeria/

http://cdc.confex.com/cdc/nphic10/webprogram/Paper24509.html

World AIDS Day 1 December 2010

Today, December 1st, is World AIDS day – 

what are we doing and how are we getting on? - Anna

My meeting, at which I hoped to advance a clinical trial in India, was cancelled because of our weather (snow and very cold, and people marooned all over the place). I battled across London for the first of a series of examinations & treatments – my lung capacity, as measured by my blowing into a tube, a task which my lovely personal trainer gets me to do regularly, has more than halved  since I came back from South Africa, and although I feel absolutely fine,  I was beginning to wonder whether I had picked up TB, pneumonia, had a secret heart attack – that kind of cheerful thought. My first appointment was with my nutritionist and osteopath, who told me that me skull bones were all jammed together (stress) and that she thought that the cause of the breathlessness was also stress – diaphragm not moving.  I came out apparently unjammed, and feeling much better – later in the week my doctor pronounced – No Heart Disease – and reckoned that the apparent reduction in lung capacity – which had dropped still further - was because I am not blowing properly.  I have to practice, and I should get it back up to its normal 700 (now 300…). I am relieved - ; think there is something; and am convinced that the complementary practitioner is right – it is stress. I have been working so hard at this, and doing little else, and a flow of cash would be a lovely thing.

Clive was on his way to Johannesburg, to swear allegiance to the Queen, and confirm British citizenship. That means that one day, we can get him here, to talk.  Readers, come! It will be worthwhile. Clive, more than anyone, should wear a sandwich board; 

“Exhibit One” 

 “I’m FINE”  

Then, he was invited to talk to a major bank, one of whose employees was treated. 

Like many of those we have treated, he is being watched.

Michaela, a wonderful musician, along with her many other talents, was playing her bowls for World AIDS day at the Medi Spa http://www.medispa.co.za/index.htm
Ubuntu Wellness Centre  http://www.ubuntu-wellness.co.za/Contact.aspx , praying in good energy for HIVEX. Michaela will have a new CD out shortly. It records her playing with South African musicians. It has been produced by Howard Butcher of Peace of Eden, and I think it will be really special.  I feel very privileged to have heard Michaela play in different places around the globe.

Michaela, playing her bowls for World AIDS Day

On this day, out news reports on events worldwide – reports Caressa Cameron, Miss USA, talking at a conference on mother to baby transmission. This can be prevented quite easily and cheaply, but still the UN reports that last year 370,000 babies were born with HIV. Half are expected to die before they are two. Now why can’t we try to strengthen their immune systems using safe HIVEX equipment?  Because we aren’t out there.. we don’t have machines, registrations, money..Yet. Bring it in! In South Africa, more than 30% of mothers-to-be test positive for HIV. In July, we met a young mother who had been treated by HIVEX a couple of months earlier, when she was around 8 months pregnant. Her baby was a strapping little bruiser who looked as healthy as any baby I have seen. We learnt in September that the baby had tested negative for HIV.  That young woman had had very little sexual experience, had almost vertainly contracted HIV from her partner, and was in deep shock when we met her. At that point, she had not yet summoned the courage to talk to her partner.  Shame, stigma again. Our press reports that 25% of UK HIV sufferers don’t know that they are HIV+, and our budgets are cut, so there are fewer messages to bring risk to people’s attention. And, good news this year.  HIV infection rates are dropping, though not yet in South Africa.

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