Ideas Meeting to End Harassment

posted: 13/12/2010

What should the council, NHS and other public bodies be doing to stop HIV abuse and harassment? People with HIV, their partners and friends can put forward ideas and have a say at a meeting in Manchester in late January. 

The Equalities and Human Rights Commission are holding a meeting for the families, friends and survivors of disability-related harassment (including HIV abuse).

Legal duty to end harassment

Public bodies all have a legal duty to ‘eliminate’ disability-related harassment and its causes. HIV abuse, threats and violence are all examples of disability-related harassment.

Most public bodies are doing nothing effective to ‘eliminate’ HIV and other forms of disability harassment. Because of the stigma associated with HIV public bodies should be prioritising the ending of HIV stigma and its causes.

What should public bodies be doing?
There is almost no limit to the creative (and cheap) ways public bodies could promote better public attitudes to people with HIV.

• The Local Government Improvement and Development website has top tips and case studies on improving ‘ community cohesion’
• The Institute for Community Cohesion also has resources, toolkits and case studies  

Ask to take part 

If you have been directly affected by disability-related harassment for example because of HIV, or someone you know has, and you would like to attend the meeting, please tell them as soon as possible. They will then invite you and send you the details of the meeting. There are only a limited number of seats so please book early. Email or telephone the Equality and Human Rights Commission: 0161 829 8174

This Manchester meeting will begin on Monday 24 January at 1pm and end by 5pm.
 

Please note this meeting is only for people who have experience of disability-related harassment.

Campaigning actions

During 2010 George House Trust has been encouraging people with HIV and HIV organisations to take part in this Disability Harassment Inquiry.

The commission has powers to order public bodies to take action and expects to publish its report and recommendations in the first part of 2011.

Find out more about the commission’s Inquiry into disability related harassment

HIV Stigma and Harassment Action

posted: 24/03/2010

Ending HIV stigma and harassment has edged a little closer. An official inquiry is about to begin into progress by public authorities on eliminating disability harassment – and this includes HIV stigma. The Inquiry is called because of recent cases of severe disability harassment neglected by public authorities. Councils and the NHS, among other public bodies, are simply not doing what the law tells them to - eliminate disability harassment.

Last week George House Trust met with the Equalities and Human Rights Commission in Manchester at a consultation into exactly what the disability harassment inquiry should look into.
 

• We made it plain that the official Inquiry must include HIV and not just people with learning difficulties or mental health problems.
• We said that people with invisible but highly stigmatised conditions like HIV face considerable disability harassment and stigma, and many barriers to complaining.
• We said that public bodies, with rare exceptions, ignore their duty to eliminate HIV disability harassment and stigma.

Over the next year the Equality and Human Rights Commission will investigate and we have offered to help gather HIV evidence. We are working with NAT to make this a nationwide effort.
 

What will happen?
The Commission has considerable powers to force public bodies to act if they are not doing their job. We have a right to expect things to improve and the least we expect is public campaigns to make HIV stigma and harassment socially unacceptable everywhere, a bit like the Kick Racism out of Football campaign.
 

The powers the EHRC has to force public bodies to eliminate HIV stigma and harassment means HIV stigma and harassment could really start to fade away. We think the Commission should start using its powers - this is one of the best hopes we have for ending HIV stigma and harassment.
 

We’ll keep you updated on the Inquiry and how you can give evidence confidentially.
Disability Harassment Inquiry
 

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

HIV and Haemophilia Scandal

posted: 27/01/2009

The long-running scandal of the government's role in the HIV and hepatitis contamination of blood products given to haemophiliacs in this country in the 1980s rolls on. The government is now accused of withholding documents that could be vital to uncovering how thousands of haemophiliacs became infected with hepatitis C and HIV through blood products, such as Factor 8.

35 papers kept secret by Department of Health

Although the Department of Health has handed over thousands of papers to an independent public inquiry chaired by Lord Archer of Sandwell, the MP Jenny Willott has discovered through a parliamentary question that 35 documents are being withheld, many on the grounds of commercial interest.

"It is appalling that after 20 years, the government is still withholding information on one of the biggest health disasters this country has ever seen," said Willott.

Archer's inquiry, which is expected to report within weeks, was set up after the government persistently refused to hold an Inquiry. Jenny Willott MP, says the government ought to have given it official backing.

companies' profits protected after lives lost

"Over three-quarters of those who contracted HIV through contaminated NHS blood are now dead," she said. "The surviving victims' health has been ruined and thousands of others suffer from the daily effects of hepatitis C infection. Yet the UK government has consistently resisted calls for an inquiry. How can the government put private companies' interests, dating back to the 1980s, ahead of the right of the infected and the families of the deceased to know how this dreadful saga was able to happen?

"If the government had backed the independent Archer inquiry, the inquiry team would have had access to all the relevant information. Instead, potentially, crucial information will not be considered by Lord Archer. The Department of Health didn't even send anyone to give evidence to the inquiry.

"The government cannot hide from this issue forever. Hundreds of MPs from all parties support the surviving victims' right for justice and we will be picking up the mantle from Lord Archer when he reports in the next month."

Dan Farthing of the Haemophilia Society said: "By withholding vital evidence, the department are showing a profound lack of respect, not only to the inquiry and those who have given painful personal testimony to it, but to the thousands of families affected by the disaster. Commercial interests should not be put ahead of the effort to find out what went wrong, learn the necessary lessons and improve safety in the future. When the report is published we hope that the department will set aside its defensive approach and work constructively to address the injustices that have been highlighted."

More than 1,200 people were infected with HIV and 4,800 with hepatitis C after using contaminated imported blood and blood products such as factor 8 in the late 1970s and 1980s. Two-thirds are now dead.

The Archer inquiry heard that there was a government target to end the importation of blood in the mid-1970s, but it was not met. The shortfall was met, not by increasing UK production, but by importing blood products made from the blood of paid-for donors in USA cities who had high risk lifestyles. (People who donate blood for money in the USA tend to be poor, unhealthy and desperate)  

The UK health department knew of the risk of HIV contaminated blood as early as 1983. The government claim they chose providing essential treatment for haemophiliacs despite the risks of HIV and hepatitis infections. In 1985 the National Blood Service (NBS) introduced HIV screening for donated blood, and since this time only three people have been infected with HIV in this way.

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