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.

A brief update - Nell

 Some news to start, Anna and I will be travelling to South Africa next week. Anna has been three times in the past year but it's an entirely new experience for me. It's hard to say until we get there what we will be able to achieve but there are some potentially very exciting things in the works.

The last time I spoke to Leaflet I was unable to reach her phone right away. When she called me back she told me she had been with a patient and they had been praying together. A few weeks ago those involved decided to have a joint prayer, this began happening every Friday and now happens every day at one o'clock. And sometimes more than once a day if they feel they don't want to wait until then! She said lots of people are reluctant to enter the actual treatment room at first, so she will sit and pray with them. She will encourage them to tell their families if they haven't, and let them cry until they feel ready. Often when people first come for treatment they are embarrassed and scared of admitting their status. Leaflet told me it's amazing to see people realise that it's a safe, healing place, that they can talk about the virus without being scared. She said people feel they have nothing to hide, they are amongst family and they are free. For some people it may be the first time they've ever told anyone. I've always known there's stigma surrounding HIV in South Africa, but it wasn't until researching my last blog that I realised the scale of the problem. It's humbling to think how much of a difference it must make, just being able to talk about your status with people in the same position. Clive, Leaflet and all the other volunteers are creating something extraordinary.

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

A long overdue update - Anna

I’ve been busy! Wanting to spend all my time on HIVEX but not able to do so. Needing to earn money. Trying to get us backing, for trials, more machines, encouraging people to come and see what we have been doing.

It is almost a year since we began treating people in Commercial city in Durban. Still, we have no funding. Clive has given over his life to treating people and letting people know that we exist. In that year, we have treated 850 people. Many were very ill. People in wheelchairs, mouths and throats and stomachs full of ulcers, unable to eat . Most not taking ARVs, for all sorts of reasons. Too ashamed to go to the clinic, put off by side effects. ARVs are life savers, but so many don’t or won’t take them. And many stop taking them after HIVEX treatment. Whatever we say. The best we can do is to tell people to be very careful, keep on testing, and monitor them as best we can, without having the ability to do tests ourselves, and as yet, with no lab willing to do the sophisticated tests we would like. We are too small to be interesting. All the time, there are amazing stories, and we will tell you some of these, over time. A little while ago, we followed up on 650 treated people. Almost all seemed to be very well, but some people respond well initially, and then slip back. So far, we think it about 25 people, and those whom we have been able to test all have multiple HIV strains. Maybe this is the key. Some strain that the equipment is not affecting. Oh, for money and trials…

We are surviving on donations, mostly from patients, and on the work of volunteers. Clive works all the time, and I work whenever I can, given that I have to make sure that I have enough to look after my children. I rather resent the time I have to spend doing paid work. I want to work on this until we are established. Long long days. A privilege, but hard.
What has changed now, and the reason for entries, posted at last, is Nell, and freeing up my time. Nell has come to help, thanks to her grandparents and parents, who are funding this. Wow! We have decided that we will use time to let others know what we are doing, and since I am in London, and our equipment in Durban,that we would talk to Leaflet, who has been helping Clive.

Leaflet told us her own story. She was ill. Very ill. She had been HIV+ for 12 years, and she had got thin and was having night sweats so that she had to change her bedding each night. She began to vomit up blood, and couldn’t breathe. Eventually, she knew she had to take ARVs, and on January 18th she went to the clinic.,and was prescribed ARVs which she had to pick up on 28th. On 22nd, a Saturday, she knew she was dying. She couldn’t even drink water, and knew that she had to get to a doctor, but she had no money. She wouldn’t get paid until the end of the month.1 She struggled to a doctor, even though she had no money to pay, thought they would see her, The doctor suggested that she visit HIVEX. She did, and Clive suggested that she be treated straight away. 4 days until her ARVs were ready. What should she do? Suspicious, angry, aware that she wouldn’t know what had worked if she took ARVs, She couldn’t eat. Had an inflamed mouth, and her leg was swollen. When she went to pick up her medicine, some of those who had been walking on 20th were in wheelchairs, and some, not there at all.2 She cried, she prayed; “What to do? If it part of your plan..” She decided that she should take the HIVEX treatment, and not start her ARVs but after treatment, her leg was still swollen. She wasn’t sure that treatment had worked. Then she discovered that she had TB, and a week after starting TB treatment, her leg returned to normal.

When she realise that she was well, she had a T-shirt printed, with all of HIVEX details emblazoned on it. That, in a country where stigma is so great, is some endorsement! In July, she was told that her lungs are clearing very quickly. “God is good”, she says.

1 Often, people have no money by month end. Some stop eating when they run out of money. One of the reasons for poor drug compliance – ARVs aren’t good on an empty tummy.
2 One fifth of those prescribed ARVs in South Africa die waiting for drugs.

Ubuntu Child filming and my last days in South Africa - Anna

3rd January

I am here again in Durban. We are here to make a film. This time a big one, directed by Jamie Catto, formerly of the band Faithless, and director of 1Giant Leap and Who we are, and funded, at least initially, by Jamie’s mother, The film has been arranged in very short time - too short to do much about funding and I am so grateful that Jamie’s mother stepped in. Thank goodness for mothers. It is thanks to my mother (her legacy) that I have been able to spend so much time on this, and this backing of Jamie, is stunning.
When Clive was asked to treat a group of children, I suggested a camera in the corner of the room. Next thing, Jamie had offered to make a film, and his mother had offered to fund “our” part of it - all that which was not the film crew - and then later, when time proved too tight to get in the film funding, that too. Wonderfully generous. I think it will make a difference to the lives of many.


Ubuntu Child's pulicity image

This film, provisionally entitled “Ubuntu Child”, is about children. HIV+ children, who are undergoing HIVEX treatment. It will look at their world through the eyes of poets who are working with them. The poets will be with the children, look, listen, find out. They will travel to the children’s homes, see their world and what it is to have HIV here. We, my friend Annie Minns, who s a wonderful therapist, Clive, and Mahoye, who helps Clive, have worked with Cameron and Warwick, the engineer, to move the equipment, set up the theatre. The theatre is a good space, but painted entirely black. We work to introduce some colour. I want big rolls of coloured paper, but there is nothing - just 4 packs of crepe paper - 2 white, one orange and one blue. We pin them up, and it does lighten things just a little. 

The theatre, with added children

 In the evening, we are to have a meeting with all of the poets, musicians, interested people, and the film crew. Around 50 people. Jamie arrives late, one of his party having had entry problems. Readers, if you are tempted to come here, remember that you must have a visa if you want to be let in...

The meeting is tough. It seems to me that Jamie has not read the material that I sent to him. He has wanted to remain detached, to avoid his opinions being affected. I am completely comfortable with scepticism, indeed I welcome it. I know that if people keep their eyes and ears open, they will see and hear extraordinary things, and that this has all the more power when they are free to form their own impressions. A consequence of this though, is that everyone else is also uninformed, sceptical, and in some cases, downright hostile. These are people with integrity (I think that being a poet and the kind of introspection it requires and fosters, develops integrity). The same questions that everyone asks; “if this is so good why isn’t everyone using it?”; “why hasn’t it been approved?”; “where are the peer reviewed publications?” I am really looking forward to the time when those questions are no longer asked - when studies have been published, and approval has been given.. Some questions result from a lack of awareness about how these things work - they would like the work to have been done by independent scientists, not funded by HIVEX. But no trial is done like that .. Work is almost always funded by the drug company which is developing the drug, the company developing new equipment. It is up to the scientists of the independent research body - in this case the University of KZN - to ensure that their findings are impartial despite the source of funding.

I am very impressed. By the quality of people, and the number, and the local support. Spirit, passion. The poets introduce themselves - this is going to be exciting.

4th January - Treatment begins

This is the first day of treatment for the children. We are there long before - nervous and excited. There has been so much preliminary work - meetings “under the tree” - literally - with the community leaders and workers in Illovo, the rural area where many of the children live, meetings with the families and guardians, organising buses in areas where transport is difficult, some blips, as the orphanage that had originally asked us to carry out this treatment got cold feet, worried that this could be regarded as abusive of their children. It seems a shame that a safety-approved treatment, cannot be offered to children, who may not be getting ARVs. 

Illovo, the home of  many of the children

It has been so hard to organise this. Such a knife-edge. People have had so many disappointments. The vaccine trial which had to be stopped because it accelerated people’s conversion to a seropositive state (i.e. one in which the virus becomes active after a period of latency). Will any children come? Will they get cold feet? Clive and I know that the people who do not know this country and this disease well will have no idea how tenuous this is. What a massive part shame plays, so that it will be hard for people to come...

A bus arrives. 15, maybe more, children from an orphanage in Verulam, a town 30km north east of Durban. They are all looked after by one extraordinary lady, who took on the task after she retired and her husband died. 24 children live in her house, and she keeps an eye on another 6 in a nearby settlement, who are looked after by their elder sister. 7 children, 7 fathers, not one in touch, youngest 5, mother dead, all but the eldest born HIV+ . It is not an uncommon pattern. The children.. Enter, quiet. Through the tunnel of the black entrance into the black cavern of the theatre. In a line, hand in hand, big eyes looking up. Quietly, no-one breathing a word yet, they sit on the floor in the large space between raked stalls and stage. We are all quite awed. For some of the children, this may have been their first time on a bus, their first trip into a city. For us, the enormity of what we are about to undertake. The lives of these little people in our hands, so trusting. We wait for the second bus, bringing more children from the rural communities of Illovo, before saying or doing much at all.

A message from the bus. It is on its way. Packed. A 26 person bus crammed with 39. Hooray.

On Tuesday we had a concert as part of the film. Music, the poets, a gospel choir. It was stunning, the theatre full. Children, treated adults, camera crew, poets, the lead singer of Freshly Ground, a big SA star, people we had texted earlier that day.. The Head of a major hospital, here in central Durban, past patients...

Last night, our director having gone home, the poets, who have come from Durban, other parts of South Africa, the rest of Africa (Lesotho, Ethiopia) and the world (America, Sweden, Switzerland,) and none of whom have been paid (have even, in one case, paid their own fare, because our budget wouldn’t stretch to Los Angeles) organised a poetry evening at the BAT Centre, in Durban harbour. Our poets are slam poets, rappers, political, lyrical.


Croc e Moses chatting to the children

There was a ticket price, and there must have been publicity, because people brought toys and books (and a trampoline) for the kids. An open mike session, of maybe 15 local poets, including a couple of big names. Then “our” poets, Including Croc e Moses, Henry Bowers, and Sage Francis who were truly stunning - talking all the way through of what they have experienced over the last week - courageous kids, miracles, and ending one of the poems written for the kids, which I reproduce below. The BAT Centre was packed, so that part way through, we stopped to take out the tables and chairs to let more people in.
I think it will be on You-tube by now.

The Durban poets plan monthly fund raisers culminating in the big one when we launch that film. Of course, they raise more than funds.

4-16th January


The kids practise traditional Zulu dancing

 I can’t believe that I wrote nothing! We were so busy. An extraordinary, moving time. So many lovely souls. I must write something because the people who worked on this were stunning. The poets: Sage Francis, Henry Bowers , Rich Ferguson, Ewok, Croc e Moses, Cool Fire, Menzi Maseko, Busi Gqulu, Ntando Cele, Mphutlane wa Bofelo, Liquidkzn and others. The wonderful crew, all volunteers: Naro, Jimmy, Ray, Jan, Marco, Phillippa, and Karen, who held so much together, Lindiwe who marshalled children, Angela, who fed people ( a major task), the children, and their parents and carers, all of whom, bar one, were HIV+. For now, if you want to know more, you will just have to look at Jamie’s blog, and Sage’s, and the Facebook page for the film.

Impromptu dance shows were a popular way to pass the time

As we put this up (in September, sorry!) I can tell you that the community leaders tell us that the children are all very well. One little girl, who was very sick, has really been through the wars. She was malnourished, had untreated TB, and has been put onto ARVs and eventually treated for TB. It will be hard to see how she really is until her TB is fully controlled. In this area, TB is the major killer, with some specialists estimating an 80 – 90% infection rate amongst people living along the coastal strip. (Please, someone, give us the money to do a clinical trial on TB, already tested in vitro at an American University. Let us do something about it…)

Sage Francis says his goodbyes

17th January
At the treatment centre in Commercial City in Durban. Clive picked me up around midday, after a busy morning. Lots of people finishing off treatments that they started at the Stable Theatre. By the time I arrive, much calmer. I talk to a music teacher and drummer, referred by one of his students. We talk about drumming as a way of drawing people in - days ago I told Clive that on my wish list for purchases for the treatment room, after bean bags and cushions, is a drum.. but we agree that several would be better - djembes- great for getting attention, helping release emotion, taking people out of their heads and relaxing them; something that helps people bond. But, sadly, not acceptable on the 15th floor of a tower block, surrounded by offices.

The Music Teacher has few students - in a country with 50% unemployment their parents discourage the study of music. But he tells me that sometimes they do not come, because they must fetch drugs, or have hospital appointments. He wishes that the stigma of HIV would go; is relieved that in this space no one is chiding him, behaving as though he must be irresponsible and promiscuous - apparently, that is the nature of many treatment programmes - they make people feel very bad about themselves. He asks me where the white people with HIV are. Clive is the first white HIV+ person he has ever seen in the flesh - at least knowingly. I tell him about a large scale study that was done across workplaces in South Africa - 22,000 people, all volunteering to be tested. Overall infection rate, from memory, around 20% amongst the black workers and 3% amongst the white. 3% is not nothing. It is around 10 times more than the UK infection rate. I would still be worried, being white.

Several people here had been treated for TB. TB is a cofactor for HIV. In other words, it accelerates the progression of HIV, and vice versa. Many HIV infected people die of TB. Sam, who has a successful video editing business, tells me that it is not routine to test TB sufferers for HIV. Seems odd to me, given that they often go together. In South Africa, 50% of people are infected with the TB bacteria1, but only 10% go on to develop TB. Unless they have HIV, in which case 30% develop TB, rising by another 10% each year. One day, we will be able to treat TB too. Just needs money. Lab work already done, and of course safety is established. It would be good to have a Phase II/III trial to establish efficacy. We ask those who have TB to get treated for it before coming for HIVEX Treatment. Don’t want to unnecessarily expose a compromised group.

One man has a terrible fungal infection in his fingers and toes. His nails are quite destroyed. I recommend thyme oil, and if that is too hard to find, tea tree oil. I wonder how it will respond. One has to recommend what is available, and affordable. No good suggesting expensive anti fungals.

19th January.

A white pastor, Lindsay, brings in a very sick man. He is the sickest person with AIDS that I have ever seen. Three months ago, this man was painting Lindsay’s father’s house. Apparently, he seemed well. Now, he is so skinny that he has had to be dressed in Lindsay’s 11 years old’s clothes, and they are dropping off him. Lindsay had been trying to get hold of him for three months, and did so, yesterday. It is improbable that someone so emaciated is still alive. He was living in a house without water or electricity and must have been facing a miserable death. Lindsay got him yesterday, washed him, and brought him here. He has had three doses of a rehydrating fluid, but when we try to give him water, vomits. I cannot imagine what this man weighs, but not much more than dry bones. We lie him on the floor, and I go out to hunt for a mattress. It takes a while, . I do not know the Durban shops - have barely been out - and the shop assistants do not know their stock, so I am sent upstairs to find yoga mats that do not exist, and deflected from the area where I find, eventually, a camping mattress. Sick as he is, this man is not too sick to be polite. It breaks my heart to hear him thank me, as I tuck the mattress underneath him. He cannot lift his head high enough for the pillow. Clive and I leave him to Mahoye’s care, and as we are driving to the airport, I ask Clive if Mahoye could handle his death, if it occurred this afternoon. I wonder how he would be treated in a hospice - would he be on a drip? His is so skinny it would be very hard to insert a cannula. We have treated him with dignity and kindness, silently prayed and gently and firmly told him that he is going to be OK. I guess that most people with stage 4 AIDS are finished off by TB, pneumonia or Malaria, before they get to this stage, but here one really sees what is meant by a wasting disease. This man is starving to death, unable to absorb anything. We have decided that he should have a long dose of the treatment - we have discovered that when treating the very ill, who inevitably sleep, it can work well just to let them sleep as long as they wish. We call Mahoye from the airport. Our man - Protus - has survived his hours on the floor. Mahoye reports that he said “what have you done to me? I feel a different man”. We clap a high 5. Dare to hope that this machine can bring him back from the dead. I so wanted to take photos - wouldn’t without his permission - and he was in no state to ask . Clive now has a camera-phone, but has a phobia of both photos and technology. I really hope that he can overcome both enough to make a record.

I doubt that Protus had more than 24 hours to live, and I have no idea whether we can save him, whether the damage that has been done already is too great. We, and Lindsay, will try our best. The experience of seeing Protus has shocked everyone, and Otis, who looked so very ill yesterday, now looks almost robust in comparison. Everyone in the room must be seeing their potential fate, and it isn’t comfortable.2

I am flying back tonight. many balls in the air - still, we are a way from breaking even, and it seems we are nearly there. We feel as if we could be an ace away from breaking through. I think we need money for more machines - and how to get that when as yet, we are treating just a few people daily.
A former patient is in trouble. She is a nurse - the lady who had terrible lip dystrophy, lactic acidosis and peripheral neuropathy, and seemed to respond very well to treatment in November. Yet her CD4 count has fallen sharply, and in HIVEX experience that is unknown. She feels bad. What has happened? We do not know. Could she possibly have been in contact with infected blood, become reinfected?. She is not the kind of person to have been reinfected through sex. I hope that we can get her seen by a good doctor. One thing that I do not like in the South African treatment regime, is habitual and chronic use of antibiotics alongside anti-retroviral. To my mind, that is dangerous. I think that antibiotics should be reserved for cases where there is infection that needs treatment, not given chronically, as it seems to be here, at least by the public clinics. This lady stopped her ARVs after a few days of treatment, and my guess is that she stopped antibiotics at the same time. What shape would her gut be in, racked by thrush as she was (candida). Is it possible that she has had a massive fungal infestation? Could that have had this effect? I hope that we can find out.3

Oh, I will miss all this. I want my kids, and I want to see how this develops, too. I also want hugs and love and sympathy.

1 More, estimated as high as 80 -90% on the coastal strip of KwaZulu Natal
2 Protus got well. He slept in front of the equipment for most of the first day. But we couldn’t get him to drink – he was vomiting it up. So Clive decided that he must go to hospital to be hydrated. We thought he would never come out. But he did, and completed his treatment and is now back working, and apparently “causing trouble” – which I take to mean, living his life!
3 This lady did get better. It turned out that her sickness was due to other things. And some people have become sick, after responding very well initially. I will write more about this soon. We want to do more trials!

http://www.croc-e-moses.com/  Croc e moses official site
http://www.sagefrancis.net/ Sage Francis official site
http://www.myspace.com/creamyewokbaggends Ewok myspace page
http://www.myspace.com/richferguson
http://www.facebook.com/rich.ferguson1 Rich Ferguson myspace and facebook page
http://jamiecatto.wordpress.com/2011/01/18/poets-orphans-and-a-possible-cure-for-aids/ Jamie Catto’s original blog post
http://www.facebook.com/#!/pages/Ubuntu-Child/110235772376426 Ubuntu Child facebook page
http://www.myspace.com/liquidkzn Liquid KZN face book page

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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