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

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

One year on - Anna

This week, it will be a year since HIVEX started treating people at Commercial City. During that year, 850 people have come for treatment. It has been an extraordinary year, and we will be telling some of their stories. We have had all sorts of people – people who were quite well, and people who looked like they were facing imminent death – improbably thin, with HIV induced paralysis, infections causing deafness, lesions and sores, ulcers in the throat moth and stomach so that eating was impossible, those with HIV induced dementia, undersized listless children, people who have suffered from misprescribed or wrongly administered HIV and TB drugs. Some taking ARVs, most not. Many refusing to go to clinics because of shame even though they face death. Mostly black people, and a few white. People from all social classes and income brackets, and from all over South Africa, as well as from other African countries.

Illness is a great leveller, and there is a wonderful sense of community amongst patients. Many are poor, at the point at which infection has become a real problem with symptoms such as tiredness, night sweats, loss of appetite, not taking ARVs, untested, undernourished, with no real appreciation of now nutrition helps the immune system. Looking at the whole picture, two things stand out : the high and often undiagnosed incidence of TB, the biggest killer in Africa, and woeful nutrition and knowledge of the importance of food and water. Poverty may be the biggest reason for poor diet, but it is not the only reason. Soils are depleted, and in many areas, especially in townships, it is hard to cook and there is nowhere to grow anything, and little to buy, so that people survive on Pap (maize porridge) with negligible fruit or vegetables, but ready access to alcohol and drugs. This week, a TB specialist told us that he believes that the incidence of TB on the Kwazulu Natal coastal strip is 80 – 90%. TB and HIV are co-factors – ie each greatly exacerbates the disease progression of the other. Clive and his volunteers encourage people to test and be treated for TB before coming to HIVEX – but many don’t, and in their experience, initial TB testing often misses TB which is not immediately apparent in the lungs.

As HIVEX treats more and more people, we see the power and limitations of the treatment. In a previous entry, I talked of Asanda, the little girl who was paralysed aged 9 through an HIV-induced stroke, for whom movement returned when, aged 16, she had EMG treatment. That, I guess, was because her body, strengthened, was able to cope with other things better. Recently, Clive treated a man called Siswe, who was paralysed through some effect of HIV on the spinal fluid. His paralysis remained. This month, he had an operation to release some of the fluid, and he is making a stunning recovery.

We want to be able to create the best possible treatment, and we can’t do that without proper testing. We can’t do that without equipment, scientists, and money. We want to carry out a proper trial on people taking ARVs, which were not readily available in South Africa at the time HIVEX did its trials. and HIV is a mutating virus. We don’t know whether we are still targeting the best things, what adjustments should be made, either overall, or for certain individuals. It seems, overall, very good indeed. I wish we could also knock out active TB, and stop its debilitating effects.

Ten people who came for EMF treatment have died : only one of those had completed the course of treatment. Some of these patients came for treatment at a point when their organd were already starting to fail. A few people ( around 30 out of our 850, so far) seem to improve and then symptoms return. Some of that number have been tested – and they all have multiple strains of HIV ,so maybe the equipment is failing to fully knock out part of one strain. We don’t know, and what prevents us from knowing is the ability to carry out research – flow cytometry equipment - and scientists. Suggestions welcome please.

A new start perhaps - Nell

Hi, I’m Nell. I’m very new to all this, so it’s a little intimidating, but also exciting. I’m hoping the perspective of a newbie will work quite well for people looking to this blog for information, let me know!

What I look like

I was introduced to HIVEX through Anna, and looking at the testimonials she had and hearing the stories she told, it was very hard to believe I hadn’t heard of this. That practically no one other than those directly involved has. It feels now like I’m wasting every minute not shouting it from the rooftops (this blog is my compromise, maybe one day I’ll be braver and follow Leaflet’s example.)


Norwich Cathedral

A little background: I'm 20 years old, I've spent most of my life living in Norwich, a small, somewhat remote city to the North East of London. The main problem young people in Norwich and the rest of the UK face at the moment is that there aren't enough jobs, and those without jobs lack money, ways to occupy their time, and long term unemployment makes it more difficult to find work in the future. But here, when we have no jobs, we still eat, and have somewhere to live, and adequate healthcare, generally. I did have a job, and I didn't hesitate when I had the chance to do something that I knew would be making a positive difference to people's lives. I've been struggling with knowing what I want to do with my life and no matter how long my work with HIVEX lasts I know it will have helped something that I think is very important. I've never been to Africa and I haven't seen what HIV can do to communities, except on TV. But when confronted with the reality of the ways HIV is affecting the world and the potential for change HIVEX represents, knowing I had an opportunity to help, there didn't seem to be any reason to say no.

Everybody working on HIVEX is doing so because they care. We don't have the funding to pay anyone a salary. I think one reason individuals from western society can be reluctant to engage with charity is that it can be overwhelming. When I really start thinking about it, it can feel impossible to justify having anything beyond food and a roof over my head when there are so many people who don’t have even basic necessities. It seems many ways of donating to charity, such as charity wristbands, monthly standing orders, enable us to give whilst still keeping the reality at a distance. In the past, it’s easier for my brain to deal with just not thinking about it and not contributing anything rather than feeling like I’m helping, but having to mentally confront the issue.

It’s problematic, to say the least. The difference with HIVEX is, that while HIV rates are still overwhelming, I know what given the right opportunities we can affect meaningful change. There isn't the same sense of powerlessness. For me, this is one of the reasons HIVEX is so incredible, and frustrating at the moment. Anything I do to aid people being treated I know is helping in a definite and very immediate way. But of course everyone involved knows if we just had money or approval then we could be doing so much more. Thinking in terms of the number of people treated, versus the number of HIV positive people – in 2009 an estimated 5.6 million people in South Africa alone – it can feel like HIVEX has barely made any difference at all. The important thing is to focus on the people that we have helped, ways we can use their experience to help others, and what we can do in the future. I'm reminded of the story of the little boy (or girl depending on the variation) throwing starfish back into the sea. There are hundreds washed up on the shore and an onlooker remarks there are too many for him to ever be able to throw back, that he'll never make a difference,. The little boy keeps on throwing and replies “I made a difference to that one.”

Anna has told you about Leaflet, who was treated and now volunteers at the treatment centre in Durban. Leaflet works with the people who have come for treatment and has told me the stories of two men.


Fishing on the Umhlanga rocks

Skhumbuzo is a young man from Umhlanga, a wealthy suburb of Durban, he has been HIV positive for several years. Despite the huge stigma around HIV in South Africa he’s engaged to be married, and his fiancé is the one who brought him in for treatment. This is a traditional Zulu engagement negotiated between the two families with a dowry, “lobola” to be paid.

http://en.wikipedia.org/wiki/Lobolo It is a family matter. Lobola will go to the wife's family. Depending on who they are, this could be cattle, or take the form of a washings machines and money. In any event, it will be substantial, and part of the contract is that the wife must be a virgin. But not the husband. That is not expected of Zulu men, and this young man has contracted HIV from a previous sexual partner. As is very common in those with weakened immune systems, the patient has been suffering from TB. He had been treated successfully for 4 months when he was accidentally given the wrong medication. The side effects of this included painful sores around his mouth and ulcers in his stomach which prevented him from being able to eat. When he came in for treatment he was very thin and unable to walk without assistance. After less than a week of treatment the sores are healing, he’s eating porridge (Pap), attempting more solid food, and beginning to walk. Though slowly, Leaflet was quick to qualify.

Patient X is a man who was in treatment at the same time as Leaflet. He had been using antiretrovirals but was still suffering. The skin on his leg was infected, Leaflet described the flesh at ‘rotten’, ‘black’ and ‘falling off’. He had been seen by doctors and they were considering amputation. He was a work colleague of Leaflet, and while she was unsure of the positive effects of the treatment on her, (she had undiagnosed and untreated TB) he could see that change in her, and demanded to accompany her after she had been treated for just a few days. Now, months on, his leg has completely dried up, with no complications, and he can now wear shoes!

In my most recent conversation with Leaflet she gave me the numbers of several HIVEX patients, some still in treatment and some who have completed it, who wanted their stories told. Muzi is the first person I've spoken to directly, he's completed his treatment. Hearing him talk about his experiences was extraordinary and I found my eyes welling up speaking to Anna about it afterwards. He sounded so happy, it's clear he feels the treatment has changed his life. In his own words:

“My name is Muzi, HIVEX helped me a lot. I was very very weak, Now I am strong, very very strong. You cannot believe it. This place is amazing, amazing. I was very very very very weak, but when I got treated, 2 days then I felt strong. After I got full treatment I was still strong. You cannot believe. It helped me a lot. I finished treatment [recently], I can still feel my body working, as if something is inside me. My immune system is still working. I had a runny stomach, but it stopped [after 2 days] , [I had] no appetite. I am a MAN now. I can do anything now. I know. I am happy after treatment. I live in Port Shepstone, I want a machine there too."

 

The Port Shepstone coast

Personally, connecting individual stories with the work that we're doing really makes it real in a way that numbers can't. I'm hoping that I will be able to continue having conversations with Leaflet and tell you the stories of more patients as we continue the treatment in Durban. The HIVEX treatment is certified as 'safe', but it has no official medical status,. When I started telling my friends and family about HIVEX and the problems it was facing I was met with a barrage of suggestions of people I should contact: Oprah Winfrey, Bill Gates, the Clintons, the man who writes the 'Bad Science' column in the Guardian. And I know people have tried. And it is hard when studies are so old (2003), and there aren't publications, and when treatment had stopped. Now, with around 850 people treated in the last year, things could be different. Whoever reading this isn't going to be Oprah (unless you are, in which case, hi) but you're interested and I think you should know.

There is now a South African charity, formed by supporters of HIVEX called 'Africa learns SA', it is designed to help people with the cost of treatment.

NPO no: 073-136

First National Bank Ltd

Durban North
Account no: 62327136546
Branch code: 220426

Telephone numbers:
Leaflet: +27 730931662
Mabel +27 781818297

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.