The Haemophilia Society calls for an enquiry into its own failure and that of government, pharma and clinicians
Medics and politicians knew by the mid-1970s that commercially manufactured blood products from the USA were suspect. By the mid-1980s there were warnings of a similar situation in respect of HIV. Nevertheless these products continued to be imported and used.
British haemophiliacs and other victims’ lives were blighted in the 1970s and 1980s by these cheap imported US blood products, harvested from inmates and drug addicts. More than 5,000 were infected and went on to unknowingly infect family and friends.
In 2010 this site recorded the efforts of Lord Alf Morris, fighting for better treatment of patients infected with contaminated blood products for years. It was noted that eight years ago the Lancet reported the Irish parliament’s generous compensation package for haemophiliacs infected by contaminated blood products.
The British government has not treated victims well. Many of the relevant records have disappeared. Former Health Secretary Patrick Jenkin and former Health Minister David Owen both searched the departmental archives, but were told that the documents had been accidentally destroyed.
Of the 1,200 who contracted HIV, barely 200 survive. They have fought tirelessly for safe products and proper compensation for the avoidable infections which have devastated their health, turned family members into full-time carers, and left many living in poverty.
Failures in government policy and negligence of public bodies led to people being infected with blood borne viruses as a result of their treatment with blood products in the 70s and 80s. The impact of these failures was worsened by poor communication from government, healthcare professionals, pharmaceuticals companies and The Haemophilia Society. Warnings were not heeded and errors were subsequently hidden.
Pharmaceutical companies and clinicians did not share, or even hid, information about risks from patients and patient groups. Blood products, for the treatment of bleeding disorders, were made from pooled human plasma which was known to allow the transfer of viruses. Blood donations, particularly in the USA, were taken from high risk paid donors, often in prisons and without adequate processes to screen potential donors.
We condemn the actions and inactions of all parties that contributed to dangerous products not being withdrawn, patients not being properly informed of risks and technological and procedural advances ignored.
The additional funding announced last year to more than double the budget for contaminated blood support has not gone to those most in need and will ultimately leave many people with less support. Other affected groups such as bereaved parents, partners and other family members have been particularly under-supported and ignored.
We do not think the current settlement is sufficient to provide the support people need and deserve. It does not allow them to have a reasonable standard of living rather than just be removed from poverty. We reject the current proposals for reform of the support arrangements in England as they do not recognise the full needs of the bleeding disorder community, were poorly conceived and consulted on, do not provide sufficient support to people covered by the scheme and still exclude some individuals entirely.
We want a full public inquiry under the inquiries act as only this could compel witnesses and would shed light on concerns such as:
* the inappropriate use of known infected treatments on previously untreated patients
* why and how British self-sufficiency in blood products was never achieved
* why tests to identify infected blood donations were not implemented sooner
* when and to what extent the UKHCDO, The Haemophilia Society, the Department of Health and the NHS held and were aware of information on risks and tests for infection with blood borne viruses
* why potential methods to heat treat blood products were not fully investigated and implemented sooner.
To facilitate this we want a full and open disclosure of all information held by the Government, or elsewhere, relating to the sourcing, manufacture, procurement, licensing and NHS treatment with contaminated blood and blood products. However, an inquiry must not distract from or delay the implementation of an improved support scheme.
The statement continues here:
Following the statement see the APPG meeting minutes 29 March 2017 final.
Following our tenth entry: MP Andrew Gwynne, who successfully introduced the Debt Relief (Developing Countries) Act and worked long and hard to get justice for those who received contaminated blood through the NHS, we turn to Botswana, after reading an obituary by Emily Langer in the Independent. Her subject was Ketumile Masire – a statesman who described himself as ‘a farmer who has been drawn into politics’.
A summary with added links and photographs
Masire herded cattle before enrolling in a primary school at 13 and receiving a scholarship to attend a high school in South Africa that trained many leaders of the first government of independent Botswana. When his parents died he supported his siblings, becoming a headmaster. He later earned a Master Farmers Certificate, and having saved enough money to buy a tractor and became a successful farmer.
He served on tribal and regional councils and was a founder and secretary-general of the Botswana Democratic Party, now the country’s leading political party. He once travelled 3,000 miles of the Kalahari Desert to attend two dozen meetings over two weeks.
After serving as minister of finance and development planning and Vice President, Ketumile Masire became President of Botswana (1980-1998): roads and schools were built, healthcare improved, access to clean water expanded, farming techniques advanced and life spans extended.
The discovery of diamond reserves had transformed the country’s prospects and Masire continued to use the revenues for the public good after the death of his predecessor Seretse Khama.
He became ‘a model leader in a model nation on a continent where poverty, corruption and violence had crushed the hopes of many for stability and prosperity’.
After leading Botswana through a drought that persisted for much of the 1980s, he shared the Africa Prize for Leadership awarded by the Hunger Project in recognition of the food distribution efforts that helped the country avoid starvation during the crisis.
Though South Africa was Botswana’s major economic partner, Botswana opposed apartheid. “He had to walk a fine line in a really rough neighbourhood,” said Chester Crocker, a former US assistant secretary of state for African affairs. “He had to get along with everybody, without sacrificing his principles.”
After leaving office, in addition to tending the cattle on his ranch, Masire advised other African leaders and chaired an international panel that investigated the Rwandan genocide of 1994. He made important contributions to peace efforts in Congo and, more recently, Mozambique. He established a foundation which seeks to improve agriculture, governance and children’s health in the region.
He once said: “We have a saying in Botswana: A man is never strong until he says what he believes and gives other men the chance to do the same. I am proud to say without a doubt – we are a strong democracy.”
A more chequered account of his life is given in Wikipedia..
This site has recorded many instances of rewards for ethical commercial or financial failures but the editor stopped searching at 29. A typical example filed two years ago starred Lin Homer and John Manzoni. Now political figures are coming to the fore. Number 30 was health minister Jeremy Hunt.
Four years after the first report we read of two further rewards for former MP Jacqui Smith, who lost her Redditch seat after incorrectly claiming expenses and was later appointed chair of University Hospitals Birmingham NHS Trust.
Edgbaston MP Gisela Stuart was quoted in the Birmingham Post at the time as saying “It looks to me as if we are rewarding failure and I have raised this with the Health Secretary”.
Earlier in July this year, Ms Smith was appointed by the Department for Education to chair the board of the new Sandwell Children’s Social Care Trust and – regrettably – today it is reported that she has now been elected Chairman of The Lunar Society.
What conclusions can the public draw?
The World Press Freedom Index for 2017 was recently published and out of the roughly 180 countries analysed Jamaica was ranked 8. (In 2016 Jamaica was ranked 10.) Number 1 was Norway followed by Sweden. The British and US media came in at 38 and 41 respectively.
The World Press Freedom Index report is published by Reporters without Borders – Reporters Sans Frontières (RSF).
The annual index analysis focuses on media freedom, diversity of opinions allowed, independence of media, transparency, the legal environment, and abuses or violence directed at journalists.
The index is not there to comment on the quality of journalism; which in Jamaica for me is definitely top ten material.
Especially in the coverage of sports, human stories, local politics, youth, local communities, entertainment and education.
Part of analysis by RSF is drawn from questionnaires completed by the local media professionals, lawyers and sociologists.
Canada’s media – ranked 22 – has had its level of state spying and intimidation. The US media has had their own challenges of intimidation by both the Obama and Trump administration.
- If Donald Trump Targets Journalists, Thank Obama– James Risen
- CIA designed tool to keep tabs on files leaked to whistleblowers and journalists.
See RSF ranking table: https://rsf.org/en/ranking_table
The general message:
“I avoid the news; I just don’t switch on.“
Anecdotal evidence from many encountered indicates a growing intolerance of TV, the Murdoch press in particular and radio, which constantly focus on the latest man-made or natural disaster and the actions of the corrupt or callous – a tiny minority.
Online headlines presented by the Murdoch Times today:
- Mike Ashley (above) ‘drank 12 pints and vomited at meeting’
- No 10 ‘buried terror report to protect Saudi Arabians’
- Border Force makes record seizure of guns
- Venus in tears as car crash casts a shadow over first-round
- May’s pork barrel tactics demean our politics
- City gripped by sub-prime lending fears
- Pay row leaves Bank of England facing its first strike in 50 years
- Rise in high-risk dependency on alcohol among those seeking help.
If you want something better go to Redbrick, and read the thoughtful offerings of students at Birmingham University: http://www.redbrick.me/comment which offer a more balanced view of life around them.
A revulsion from the continual diet of news focussing on the thankfully rare instances of disaster and cruelty is growing. A reaction from hardier souls is to actually read these newspapers and listen to or watch the news because ‘You’ve got to know what’s going on’ – apparently oblivious of the fact that what is presented is often far from being the truth – see our Secret State category for more on that subject – the 18th here.
A report about the first scientific study into the effect of TV news reports confirmed the obvious: that broadcasts of reports of famine, violence, poverty and crime leave viewers considerably depressed – and happy stories of Lottery winners and “miracle” recoveries (equally rare) do not.
Psychologist, Prof Graham Davey (University of Sussex), who conducted the study with colleague, Dr Wendy Johnston (University of Edinburgh), said: “We found that negatively balanced material does change people’s moods in a negative way, and this could have other knock on effects, such as making people worry more about their own problems.”
The writer’s unscientific findings were that was that the people I met actually felt that they’d had ‘the best of it’ and were worried about the future for their children and more so for their grandchildren.
The Positive News Journal aspires to redress the balance
And it does this occasionally – see the link to this list above: ‘From political upheaval to natural disasters, the first three months of 2017 have seen many challenges. But behind the headlines, there are signs of progress and possibility. Here are 20 of our favourites’. So often, however, the reports come from far afield – only two items in the list from Britain – and many will not feel that they are relevant to daily life here.
Amongst the writer’s websites which cover political corruption, growing food insecurity, chemical and nuclear dangers and illegal killing by armed drones is one – Antidote to Gloom – which is more happily received.
This week random visitors from America topped the list (left) who actively sought news relating to the first link:
- Swiss voters embrace shift to renewables and ban new nuclear plants (top post this week)
- An all-electric taxi, releasing no emissions into the local environment
- Renewable energy storage – by rail
- Solihull, Leeds and Manchester aim to reduce air pollution and ease traffic congestion
- What went right? January to March 2017 (taken from Positive News)
Occasionally thanks are emailed by Antidote readers whose spirits have been lifted by a respite from the current destructive news-diet.
Time for change in our media as well as our politics.
The Telegraph reports that AELTC appears to anticipate ‘displays of Corbynmania’, during this year’s event.
Sharing mainstream alarm at the unprecedented scenes witnessed at last month’s Glastonbury festival, the All England Lawn Tennis Club, a private members’ club which hosts the Wimbledon Championships, hopes that warning notices, “No political slogans!”, on display at the entrance gates will be taken to heart by Corbyn’s supporters and other political activists.
This is a continuing manifestation of a threatened establishment – a general right-wing demonisation of Corbyn.
Corbyn is the norm – in tune with European heads of state
A more stable response comes from many well-informed commentators who explain that Corbyn’s ‘extremist’ ideas are actually in line with mainstream European policy and practice (above: European Socialist heads of state).
In the Financial Times, Des Freedman, Professor of Media and Communications, Goldsmiths, University of London, has remonstrated with economist Tim Harford, author of the latest two epithets, who accused Corbyn of ‘scapegoating’ and ’xenophobia’ (re requisition of empty foreign-owned property to house the Grenfell survivors).
Freedman believes that this ‘unwarranted criticism of Jeremy Corbyn’s response to the (Grenfell Tower) tragedy should be placed in the context of the 2016 FT report ‘s finding of some 9,169 vacant flats and houses in the borough of Kensington and Chelsea, adding:
“It is not “xenophobic” to suggest that these homes could be usefully occupied by those who actually need somewhere to live. It is simply common sense”.
*Des Freedman Professor of Media and Communications, Goldsmiths, University of London
An EU citizen working in this country thinks it will.
She emailed a downbeat response to the announcement made by Theresa May to European leaders that no EU citizens living lawfully in Britain when it exits in March 2019 would be asked to leave. She added that EU citizens already in the UK – and those who arrive lawfully during a subsequent “grace period”, expected to be up to two years – will be given the opportunity to build up five years’ worth of residence.
Our reader explained that it’s all in the small print: the way the UK interprets “lawfully” means quite a few in reality won’t qualify.
One category is that of students without “comprehensive” private health care cover (‘comprehensive’ never defined!). Others will be wrong-footed as the number of qualifying years change; those based in the UK who travelled abroad in the course of their work for more than 100 plus days find that year doesn’t count… Our reader adds:
“Those who’ll be unlikely to qualify for May’s offer could also include the retired French widow living off her pension (arrived in the UK as teacher in the 70s), as she’s not ‘economically self-sufficient’ … It is inhumane to leave her (& others in her situation) in limbo (she was interviewed last year after Brexit referendum and I doubt May’s offer has helped her to sleep better!) 😦
Anne-Laure Donskoy, a founding member of the 3million – which aims to protect the rights of EU citizens living in the UK – agreed, saying “It is like a teaser this statement, it gives you general direction of travel potentially, but there are things in the statement that need to be unpicked.”
Our reader sends a link to an article by another 3million founding member who believes that Theresa May’s ‘outline deal’ falls woefully short of the comprehensive, reciprocal offer by the EU that includes lifetime guarantees of all existing rights for EU citizens in the UK (‘migrants’) and British citizens living in the EU (‘ex-pats’) whose rights are equally at risk.
She adds a link to these right-minded EU proposals which were published early in June: Essential Principles on Citizens’ Rights. They aim to protect the rights of EU27 citizens, UK nationals and their family members who, at the date of entry into force of the Withdrawal Agreement, “enjoyed rights relating to free movement under Union law, as well as rights which are in the process of being obtained and the rights the enjoyment of which will intervene at a later date [for example pension rights]”.
The Guardian reports that the full details of Theresa May’s offer to EU citizens will be published on Monday.