Talk on HIV in China
posted: 26/05/2009
The Chinese Arts Centre in the centre of Manchester is hosting a talk on children orphaned by HIV in China. Chung To, director of a Hong Kong-based HIV charity will give a talk. During the 1990s, blood selling became a popular way for poor peasants in central China to earn extra income. It was a disaster in the making.
The talk is Thursday 11 June between 3.30-5pm in the Jasmine Suite, Chinese Arts Centre, Thomas Street, Northern Quarter, Manchester M4 1EU
Find your way there with this map and directions
Due to unsanitary blood collection practices, such as re-use of needles, unsterilized equipment, blood pooling, and re-injection of blood back to the donors after plasma extraction, many blood donors contracted HIV and other blood-related diseases. Some rural areas became seriously affected by HIV, with an infection rate as high as 40% to 60% among the adult population.
The HIV epidemic has created a growing orphan population. As more and more adults die with HIV, the children they leave behind become orphans. Growing up without the love and care of parents, these children may not be able to go to school due to lack of financial means, and may develop psychological problems. These orphans, who could soon be in the millions as China’s HIV population grows, will be less likely to be able to work and earn an income when they grow up, without a decent education.
Foundation in Hong Kong supports 7,500 children
Volunteering on behalf of the Chi Heng Foundation (CHF), a registered charity based in Hong Kong, Chung started a programme providing assistance to people with HIV and their children. Currently, CHF provides education sponsorship and other care and support for over 7,500 children whose parents have died of or are dying with HIV in the area, making it the largest non-governmental operation focusing on serving HIV affected children in China. It has offices in Beijing, Shanghai, Guangzhou, Anhui and Henan.
During countless trips to the Central China, Chung has visited hundreds of households in many villages deeply affected by HIV. He will share his first hand, intimate experience from a local perspective with the audience, and what the programme he founded is doing to help these children. In addition to discussing the current situation, Chung will also talk about the needs of the orphans and how we can help.
Wikipedia describes the scandal here
On August 23 2001, the Chinese government finally admitted that 30,000-50,000 Chinese people could have been infected with HIV through illegal blood collections and sales. There had been a long cover-up - not so different from our own blood donation scandal.
British Inter-University China Centre (BICC) funded the visit of Chung To, chairperson of Chi Heng foundation, Hong Kong.
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Self-Monitoring HIV
posted: 06/05/2009
People living with HIV could soon monitor their health at home using a hand-held device, similar to those used by diabetics. People would only need to go to the HIV clinic when there are problems.
Scientists at three of London's largest research centres won a £2m grant to develop a hi-tech, finger prick blood-testing gadget. The device's tiny mechanical sensors - microcantilever arrays - measure HIV levels to warn of flare-ups – such as when the viral load becomes detectable. The display will alert the user they need to visit a doctor.
Investigator Dr Anna-Maria Geretti, an NHS consultant and co-investigator based at the Royal Free Hospital, said: "If patients neglect to take their treatments or need prompting to see their GP, the device will provide a simple way of letting them know. It will really empower HIV patients to keep a close eye on their health and their treatments."
Instead of going to the HIV clinic every three or so months "just in case", people who self-monitor would only need to see their doctor when things were going wrong.
As well as reducing HIV clinic visits, it could make most difference in developing countries where rapid and affordable ways to monitor HIV patients are urgently needed, say the researchers.
The microcantilever arrays are coated so that HIV and other proteins which mark HIV disease progression, stick to them.
These cause the highly-sensitive sensors to bend and how far it bends shows the level in the body, explained lead investigator Dr Rachel McKendry, of University College London and the London Centre for Nanotechnology.
"We have used microcantilever arrays to investigate drug resistance in superbugs such as MRSA, and are excited by the opportunity to extend this approach to detecting HIV markers," she said. Dr McKendry is working with Imperial College London, Cambridge Medical Innovations, Sphere Medical Ltd and BionanoConsulting on the three-year project to develop the prototype hand-held device for clinical trials.
Lisa Power of the Terrence Higgins Trust said: "This is certainly a very good idea. If you have diabetes you can check your blood sugar levels. Similarly, it would be very useful if HIV patients could check their own viral measures, say, once a month. It would not replace specialist advice, but it would be a way to reduce a patient's dependence on doctors."
Personal electronic devices for people with long-term conditions to check their health are becoming much more common. They are a way for people to take more control of their own health. It will help demedicalise HIV, and will allow clinics to spend more time with people needing more care and support. The downside can be the cost, because often these are not paid by the NHS but needs a committed patient with money.
Source
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Haemophilia and HIV
posted: 09/03/2009
Transfusion roulette
The New York Times called it "transfusion roulette" (1965): the high rate of hepatitis C among poor people most likely to sell their blood, or what the Mail on Sunday called "killer blood" when the HIV link was reported (1983).
In 1970 the distinguished Richard Titmuss had written a booklet called The Gift Relationship, arguing a system for donating blood was far better than one were blood in bought: the NHS vs the US commercial system.
US blood
What wasn't widely understood was that in the mid-1960s, new methods of treating blood plasma had transformed the treatment of haemophilia and thus greatly increased demand for plasma. The old-style NHS failed to respond; hence the UK imported more US blood.
David Owen, Labour's forceful health minister in 1974-76, struggled to promote self-sufficiency and failed. Pre-devolution Scotland moved faster to use heat-treated blood. Whitehall seemed both slow and careless.
The Tories proved arguably far worse after they won the 1979 election. They blocked replacing the substandard laboratory which meant we depended on the USA. The problem carried on for far longer and killed many more people as a result. Only in 1987 did health minister Tony Newton (a good guy), announce a £10m special fund to help victims. Only by 1991 was the screened blood supply secure again.
Twenty years on some compensation has been paid out by the MacFarlane (HIV) and Skipton (Hepatitis C) trusts to 5,000 or so victims of infected blood transfusions. But far less than in Ireland, for example, which took half the time the UK took to sort out its own blood disaster.
Inquiries
Whitehall has staged at least two internal inquiries although, as Lord Archer discovered, a lot of evidence was destroyed "in error". There is strongly circumstantial evidence that evidence was destroyed by the Department of Health, after one EU government lost a legal case over its own mishandling of the crisis.
But no public inquiry was ever agreed so £75,000 was privately raised to fund Archer's two-year independent probe, instigated by Lord Morris, ex-disability minister and president of the Haemophilia Society.
Other countries have done better. In France two blood transfusion officials were jailed in 1993 ("scapegoats", said allies). Canada and, as long ago as 1991, Ireland, set up generous compensation schemes.
Our approach has been "niggardly and inadequate", Archer says; officials have ganged up from the start against an inquiry. Most health secretaries have mishandled this, and official liability for mistakes has never been admitted in the UK.
British vice
A British vice, I fear. Lord Archer wants a statutory commission with agreed entitlements. That public inquiry would be nice. So would a formal apology.
Who was helpful? I asked Peter Archer. Certainly David Owen and Lord Jenkin (social services secretary, 1979-81), he says. Lord Warner declined to give evidence. No current ministers have spoken. Oddly enough, health officials were not obstructive, were even helpful in a quiet way, as if they wanted to do good by stealth. Archer had three meetings with them, not minuted, of course.
The official position now? They're "studying" the report.
You can sign a petition to Number 10 to implement what the Archer report recommends
source
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Haemophilia, HIV - Failings Condemned
posted: 25/02/2009
A public inquiry has condemned the series of failings that led to thousands of people in the UK being infected with HIV and hepatitis from contaminated blood products.
The independent privately-funded inquiry called the use of contaminated blood products to treat people with haemophilia a "horrific human tragedy".
The report suggested UK health bodies had been slow to react, but accepted it was hard to directly apportion blame.
People with haemophilia and their affected families are angry and demanding proper compensation for the government's failings. Ministers and civil servants appear to have neglected the needs of haemophiliacs from the mid 1970s despite clear evidence of blood contamination problems and the need to act urgently.
It also appears department of health papers on the scandal were destroyed in case haemophiliacs took them to court. Patients in Ireland had won a court battle about the same problem of government failure.
In the 1970s and 1980s, nearly 5,000 people were exposed to hepatitis C.
Of these, more than 1,200 were also infected with HIV.
Almost 2,000 have since died as a result.
A tale of haemophilia
Haydn Lewis, 52, from Cardiff, is a haemophiliac who became infected with HIV and hepatitis C from tainted blood.
He is now on the waiting list for a liver transplant, and believes he infected his wife because doctors delayed telling him.
He said the report should have been more critical of government, and recommended better compensation arrangements for those affected.
"I want to wake up one morning and not have to think about this issue because that is how you lead a constructive life," he said.
"This has been a ball and chain around my ankle for 20-odd years, trying to get it addressed once and for all with some closure."
Despite the death toll, successive governments have refused to admit any fault or hold an investigation, forcing this public inquiry to rely on private donors.
Haemophilia is a rare inherited bleeding disorder in which the blood does not clot normally.
There is no cure, but the condition can be managed using a clotting treatment - typically factor 8.
From 1973, some blood products were imported from the US as UK suppliers could not keep pace with demand.
The two-year inquiry, led by Lord Archer of Sandwell, said the main responsibility for the tragedy rested with the US suppliers of the contaminated blood products. He said commercial interests appeared to have been given a higher priority than patient safety.
Much of the blood used for creating the factor 8 treatment came from desperate donors, such as prison inmates, and injecting drug users who were paid to give blood. Injecting drug users and prison inmates in the USA have a much higher likelihood of hepatitis C and HIV than the rest of the population.
Blood products began to be heat-treated from the mid 1980s to kill viruses.
However, Lord Archer also criticised the government at the time for being slow to become self-sufficient with blood products - UK-sourced blood is never paid for and all blood donors are carefully screened.
He said there was "lethargic" progress, with England and Wales taking 13 years compared to just five in Ireland.
Deal with the needs now
But he added: "It is a bit late to say who is to blame when little can be done about it.
"What the government ought to address is the needs of people now."
To do this, he recommended a government-administered and backed compensation scheme for those who were affected - money currently available to victims comes from charitable trusts.
And to improve the treatment and management of the condition, the inquiry called for a committee of specialists to be set up to act as official advisers to ministers.
Lord Archer also said a public inquiry should have been held earlier.
He said some witnesses were unable to fully recollect what had happened because of the passage of time.
Department of Health refused to give evidence
And Lord Archer lamented the decision of the Department of Health not to give evidence publicly - there were several private meetings with officials - and with-hold certain documents.
"It is hard to say what we could have found out."
'Swift action' call
Sue Threakall, from the campaign group from Tainted Blood whose husband died after being given contaminated blood, welcomed the report.
She said: "What we need now is to see some very swift action from the government.
"All we have ever wanted is the truth, and some justice."
Christopher James, chief executive of the Haemophilia Society, agreed.
He said the use of contaminated blood was the "worst tragedy in the history of the NHS", and the way victims had been treated to date had not been right. He urged ministers to make up for this.
He said: "It is absolutely shameful that successive governments have not held a public inquiry into this issue.
"We've said for some time that the current level of payments and the method of payment are inappropriate and not fit for purpose.
"It is now up to the government to look at the report.
"We want them to act on it urgently and significantly."
A Department of Health spokesman said: "We have great sympathy for the patients and families affected and will study the findings of Lord Archer's report in detail."
He added there was now "robust screening" of blood and blood products taking place.
The Scottish Executive has promised a full public inquiry.
Publication of the report follows the news last week of the first case of vCJD in a patient with haemophilia - discovered during a post-mortem after the patient died from other causes.
Up to 4,000 haemophilia sufferers have been warned they could be at risk of variant Creutzfeldt-Jakob disease.
Andrew March, a haemophiliac who contracted both HIV and Hepatitis C through contaminated blood treatments, said he believed that information had been deliberately hidden.
"I believe there's been a definite cover-up of the information," he said.
"You know, various documents weren't released in the FOI that came directly from the department.
"Campaigners had to source these documents under their own initiative. Well, intent's a very hard thing to prove but I do believe there was wrongdoing."
The Human Costs
4,670 people got hepatitis C after receiving tainted blood from NHS in the late 70s and early 80s
1,243 people got both HIV and hepatatis C from infected blood
2,000 (estimated) people have died as a result of receiving contaminated blood products
£75,000 cost of Archer inquiry, which was funded entirely by donations and received no government support
source 1 with audio and video
source 2
source 3
The Archer report
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HIV, Haemophilia and vCJD
posted: 18/02/2009
The first NHS patient to contract the human form of BSE after being treated with infected blood products was confirmed yesterday by the Health Protection Agency (HPA).
It released details about an unnamed man with haemophilia who was injected with a blood-clotting agent made from an infected donor's plasma.
The man, who was over 70, died from an unrelated condition after showing no symptoms of variant Creutzfeldt-Jakob disease (vCJD), or any other neurological condition. The vCJD infection was only identified, in his spleen, during a postmortem.
In 1999 blood supply safety measures against vCJD began
The HPA said: "It is known that the patient had been treated with several batches of UK-sourced clotting factors before 1999, which is when measures to improve the safety of blood in relation to vCJD were introduced."
The treatment included one batch of the clotting protein Factor VIII that had been taken from the plasma of a donor who went on to develop symptoms of vCJD six months after donating it in 1996.
Risks for haemophiliacs who may also have become HIV+ from blood products
Professor Mike Catchpole, director of the HPA's centre for infections, said: "This new finding may indicate that what was until now a theoretical risk may be an actual risk to certain individuals who have received blood plasma products, although the risk could still be quite low.
"We recognise that this finding will be of concern for persons with haemophilia who will be awaiting the completion of the ongoing investigations and their interpretation. The priority is to ensure that patients are informed of this development ... as soon as possible."
Warning 5 years ago
The HPA issued an alert five years ago to all patients with bleeding disorders including haemophilia, who were treated with UK-sourced pooled plasma products between 1980 and 2001. It said they should be classed as "at risk" of vCJD due to the possibility of infection. The agency said the latest discovery would not change the at risk status.
Call for immediate information
Chris James, chief executive of the Haemophilia Society, said: "This terrible news is causing huge worry and concern to families all over the UK. It is vital that, following the mishandled release of this news, the Department of Health now acts swiftly to give people the full details and offer them the appropriate support. Detailed information about recent developments must be made available immediately to all those who have been treated with potentially infected plasma products.
UK delayed providing synthetic blood factor
"Unfortunately, the risks are higher than they might have been because health authorities in England and Wales continued to use products derived from human blood to treat haemophilia long after most other developed countries had switched to safer, synthetic recombinant treatments." Since 1995, 164 people in Britain have died from vCJD, but there was just one death last year.
Source
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