Contaminated Blood: North East media led the way on haemophilia campaigning with the Longstaff/Grayson family

Longstaff family home targeted with painted slogans after their son Stephen a haemophiliac dies from AIDS
(Northern Echo 1987)

The North-East of England has a long tradition of activism on human rights, truth and justice from the Jarrow March in 1936 against unemployment and poverty to the ongoing Show Racism the Red Card, the UK’s leading anti racist charity set up in 1996 and continuing today. It is no surprise therefore that the region has also been at the forefront of health campaigning and for several decades, one area has had prolific press coverage led jointly by local media and haemophiliacs and their families and that is is campaigning on the contaminated blood scandal.

During the 1970s and 80s haemophiliacs born with an inherited bleeding disorder were infected with HIV and hepatitis viruses through their factor concentrate treatment, much of it imported from the US and manufactured using the plasma of virally “high risk” donors such as prisoners, prostitutes and gay men.

With the passage of time as media has changed and moved increasingly from hardcopy print to online websites, old press campaigns have become less easy to access unless an effort has been made to scan early hardcopies and give them a known digital presence. So the purpose of this article is to educate new campaigners as to the background of North -East haemophilia campaigning focusing on the fight to overcome the stigma and discrimination that emerged with AIDS as the first haemophiliacs became infected in the UK in 1983 to the battle for a public inquiry and compensation. It is a basic overview so interested persons can access these articles should they wish to explore further.

The media featured are the Northern Echo, Hartlepool Mail and Newcastle Journal and its sister paper the Chronicle. Local North-East TV interviews and radio media archives are not included as they have still to be transferred from old videos and cassettes to new media. National and international contaminated blood media campaigns instigated by Grayson or involving the author and her late husband Peter are not included in this article.

Although numerous UK media outlets had reported sporadically from 1983 on the impact of AIDS on British haemophiliacs focusing on individual cases, (often under conditions of anonymity) it wasn’t until around 1986 that a comprehensive and sustained campaign began at the Northern Echo with haemophiliacs at the centre and some families going on the public record by name. The Longstaffs, (who would later become this author, Carol Grayson’s family through marriage) were among the first with Arnold Longstaff speaking about the terrible tragedy he and his wife Alice were experiencing having learnt that both their haemophiliac sons, Peter the eldest and Stephen 9 years younger had both tested positive for the AIDS virus.

The Northern Echo launched its “Fight for Justice” campaign in 1986 focusing on Haemophilia/AIDS/Contaminated Blood and interviewing infected and affected families alongside the Haemophilia Society, local MPs and haematologists from the Royal Victoria Infirmary, Newcastle. At the same time, the Hartlepool Mail also ran stories being the home town of the Longstaffs. The Newcastle Journal and Chronicle had run some individual stories of a local family where 3 family members, a haemophiliac, his wife and child died of AIDS but did not embark on a fully fledged and prolific “Bad Blood” campaign until 2000. This was begun by journalist Louella Houldcroft working jointly with Carol Grayson and her husband Peter Longstaff.

Wikipedia describes the Northern Echo as follows:-

The Northern Echo is a regional daily morning newspaper based in the town of Darlington in North East England, serving mainly southern County Durham and northern Yorkshire. The paper covers national as well as regional news. In 2007, its then-editor claimed that it was one of the most famous provincial newspapers in the United Kingdom.[2] Its first edition was published on 1 January 1870.

Peter Baron wrote many of the stories. He began as a reporter on the Northern Echo in 1984 before becoming an editor on the Hartlepool Mail for a year. He later returned to the Echo in 1999 where he became its longest standing editor. He has an MBE for “service to journalism and North- East life.”

Northern Echo Haemophilia/Contaminated Blood Campaign

When the first UK haemophiliacs became infected with the AIDS virus in 1983, it soon became clear that this was a deadly disease and life expectancy at that time was put at around 5 years with some haemophiliacs already sick and dying. There was a terrible fear of what was then an unknown entity, and out of that grew an atmosphere of prejudice and discrimination in local communities towards those infected and affected. Families were having to cope with a disease for which there was no known cure, a virus which could only be treated symptomatically and often little could be done to ease the suffering of victims. Haemophiliacs and their relatives also found themselves plunged into financial difficulties as infected patients were too ill to work and affected families had to give up their jobs and careers to take on a 24/7 caring role.

One of the first mentions of the Northern Echo campaign nationally came in 1987 during a debate at Westminster where Tony Newton (Minister for Health) gave a statement on haemophiliacs and much needed financial assistance which came following an intense year of campaigning by the paper. To put this in context, the following will show Newton’s introduction to the plight of haemophiliacs and follow with references to the much praised press campaign.

Haemophiliacs (Financial Assistance)

Volume 122: debated on Monday 16 November 1987

The Minister for Health

(Mr. Tony Newton)

With permission, Mr. Speaker, I wish to make a statement about haemophiliacs who have become infected with the AIDS virus as a result of treatment with infected blood products. I should explain that I am doing so in the unavoidable absence of my right hon. Friend the Secretary of State, who is unwell.

As the House knows, the position under successive Governments has been that, while compensation may be sought through the courts if there is a question of negligence, there is no state scheme of “no fault” compensation for those damaged by medical treatment.

The Haemophilia Society has, however, put to us a powerful case that the position of haemophiliacs is wholly exceptional and should be treated as such. Their employment prospects and insurance status were already affected by the haemophilia itself. The treatment that led to their infection was designed to help them to live as near a normal life as possible. The hereditary nature of haemophilia can, and in some cases does, mean that more than one member of the same family may be affected.

The Government, having considered all the circumstances, have concluded that it would be right to recognise the unique position of haemophiliacs infected with this virus. We therefore propose to make an ex-gratia grant of £10 million to the Haemophilia Society to enable it to establish a special trust fund. It will be able to make payments to the affected individuals and families throughout the United Kingdom, and to do so with greater flexibility than could readily be achieved in any other way.

The House will wish to know that we have put this proposal to the society, which has welcomed it warmly. The society has asked for advice and assistance in administering the fund, which we have gladly agreed to arrange.

The grant of £10 million is being made from the reserve. When the full details of the grant and trust fund have been settled there will be an exchange of letters with the society. I will arrange for copies to be put in the Library.

I know that the whole House wishes to express its sympathy to the individuals and families who have been affected in this tragic way. I hope that the whole House will welcome this action to translate that sympathy into practical help.

End

Later in the debate the following appears with regard to the Northern Echo

Mr. Tim Devlin

(Stockton, South)

Is my hon. Friend aware that this measure will be warmly welcomed in the north of England, especially by the many bodies which have campaigned on this issue, led by the Northern Echo? Will he assure the House that the money is coming from the Treasury, not from the DHSS funds? Will it go to the widows and orphans of those who have already died from this lamentable condition?

Mr. Newton

I am conscious of the feeling about this in northern England, not least because, somewhat unexpectedly, about six or seven months ago I was interviewed on the subject by the Northern Echo. It will be open to the trust to make available money to the widows and other dependants of those who, unhappily, have died from this infection.

https://hansard.parliament.uk/commons/1987-11-16/debates/e96e201d-ee0a-47ce-aa82-22d0cad834a0/Haemophiliacs(FinancialAssistance)

As well as highlighting the difficulties of managing what was now known as HIV whilst existing on benefits, the Northern Echo ran stories detailing the types of stigma experienced and discrimination that was occurring from families refusing to allow their children to attend the same schools as haemophiliacs and fears over using the same swimming pools to the Longstaffs having anti-AIDS slogans daubed on the house in paint and a fear of using the communal chalice in church. There were also hard hitting media articles giving some background history to the scandal of infection, Owen’s commitment to becoming self sufficient in blood and blood products, details on the dangerous sourcing of plasma and the repeated safety violations. Then then were the harrowing stories of the deaths of haemophiliacs and the impact on loved ones that were a regular and disturbing feature of the media campaign which included the need for an investigation into what went wrong.

This author has a hardcopy collection of some of these articles and the following list of headlines from old clippings (see below) is intended to show the range of stories covered between 1986 and 1987. The clippings are old and fragile with dates somewhat faded or missing but are easy to date by the year if not the precise month by other stories and details in the papers. They are taken from an old Longstaff family box of stories snipped from the local media and were never intended for a formal memorial project. It is hoped, better copies can be obtained for a proposed project on the history of haemophilia contaminated blood campaigning so that these important archives can be preserved properly for future generations in order that they have an accurate history from those who lived through it as opposed to only a retrospective analysis of old documents gathered through Freedom of Information, years after the event. This is just a sample.

Northern Echo, AIDS the fight for justice, Archived Hardcopies

Year 1987

Blood killed tragic pair: Slogan attack on family (Northern Echo, January 14th 1987, Hardcopy Archived)

Liberals back cash campaign, haemophiliacs AIDS (Northern Echo, March 2nd 1987, Hardcopy Archived)

Factor VII: The lifesaver that turned into a killer (Northern Echo, November 5th 1987, Hardcopy Archived)

Pain of father who watched his son die (Northern Echo, November 7th, 1987, Hardcopy Archived)

Blood killed tragic pair (Stephen)

MP quizzes minister

Slogan attack on family, (Stephen) Caring team shoulders the AIDs burdon

Mother to start group

The figures that miss out cases

School issues plans for contraception

Disaster victim (Stephen)

Virus that turns minds to suicide

Carriers feel strain

Cash help pledge

MP urges AIDs cash

Family pleas refused

Vital help missing warns doc

Compensate the victims warns nurses

Apathy rocks first benefit concert

Vital blood hit by delay

Cash help pledge

Cash blow for haemophiliacs… Compensation would open Pandora’s box

Secret catastrophe… victims terrified of being identified

Staff get new guide

Campaign goes to Westminster

Bid to help tragic victims

Health chief’s case promise

Cause for the Lords

Demand for money grows

Maggie raise victory hopes

Meacher backs campaign

Help group faces bankruptcy, AIDS advice cash plea

Dad who kept son away “Experts can’t convince me”

Advice over the phone

Safe but not fool proof say medics

Scandal of the blood salesmen

Suing the government for a ruined life

MPs support AIDS victims

A victory for compassion

MPs flock to support campaign

MPs agree to step up pressure

Help on way for victims

Lords hear fight for justice: North-east death toll rises again

Runcie rules on sex fears

Branson condom campaign

Church’s woeful response to AIDs

Tragic costs for suffering families

People who must not give blood

Know the facts

Victims that cannot help their plight

Infected blood has given AIDS to haemophiliacs: Man who waits as the clock strikes fear

Victims life of pain and fear

Secrecy of virus table

Campaign begins to win cash for AIDS victims: Calamity is now your problem

The price we have to pay “Families are torn apart

Campaign wins support and starts debate: Now the Echo begins the public cry for justice

Plea for donors

Snubbed by schoolmates: Ordeal of Peter and his parents

Breakthrough in search for drug: Expert returns with new hope

Clubbing together to help save body

In brief

Fowler to attend meeting

Courage to fight for justice

Suitcase morals

AIDS: Spread shows no sign of slowing

Victims families face cash drain

Australians study echo report

In my view: Bright sparks in gloom

Baby safe from AIDS

AIDS appeal dashed

Chief probes PCs death

No insurance threat means no mortgage

Government bows to campaigners

Echo steps up campaign

Nothing yet for victims

Grief for AIDS PC

MPs lend support to campaign

Student session

Milk could carry virus

Look again plea

Students fight for rights

Support for AIDS cash battle

AIDS test case may open floodgates

Killer blood kills boy, 10

Sympathy but no compensation: Minister reaffirms policy on victims

Battling Jack joins the fight

Blood facts roll in

Blow in bid for AIDS debate

Two to join virus study

Liberals back echo call

Rape starts AIDs fear

Expert named

Negligence claim denied

Leaflet allay workers’ fears

On a poignant note, its important to recognize how campaigning in those early days when even some MPs wanted those infected with HIV to be isolated on a desert island, took its tool. Arnold Longstaff already suffering from ill health as a retired minor, and devastated following the death of Stephen from AIDS in 1986 and with his elder son Peter showing signs and symptoms of the AIDS virus, collapsed and died from a massive heart attack aged just 58. His GP expressed his belief that the day to day strain of fighting for justice and to expose the contaminated blood scandal had taken yet another life.

Grayson who married Peter Longstaff began her campaigning with the Northern Echo around 2001 which continues to the present day collaborating with journalist Gavan Havery. Historical articles not online feature also on a media compilation formulated by this author for the Infected Blood Inquiry. This is currently 135 pages long and has yet to record media articles published since the Infected Blood Inquiry started in 2018 but will be updated soon and presented to the Inquiry. The Inquiry was set up to investigate the circumstances surrounding the infection of haemophiliacs through factor concentrate, pooled plasma products (and in addition the separate case of those non haemophiliacs infected through whole blood transfusions). It is chaired by Sir Brian Langstaff.

The following are just 3 examples of more recent Northern Echo articles:-

Newcastle widow says blood scandal inquiry should include police investigation (Northern Echo, 11th July, 2017)

https://www.thenorthernecho.co.uk/news/15403464.newcastle-widow-says-blood-scandal-inquiry-include-police-investigation/

and

Widow claims contaminated blood warnings were missed (Northern Echo, 14th March, 2018)

https://www.thenorthernecho.co.uk/news/16085290.widow-claims-contaminated-blood-warnings-missed/

and

Supplying contaminated blood “is murder”, inquiry told (Northern Echo, 26th September, 2018)

https://www.thenorthernecho.co.uk/news/16904969.supplying-contaminated-blood-is-murder-inquiry-told/

The Hartlepool Mail

The Hartlepool Mail covers the town of Hartlepool on the North-East coast and surrounding local areas and have also supported Grayson and Longstaff (both born in the town) in their campaign for justice and continues to report on the Infected Blood Inquiry. Here are just 3 examples of their media coverage over the years which continues to the present day.

Families fury over missing organ scandal (Hartlepool Mail, July 10th 2001, Hardcopy Archived)

http://www.hartlepoolmail.co.uk/news/family-s-fury-over-missing-organ-scandal-1-990259/amp

HIV infected blood victim loses his battle for life (Hartlepool Mail, April 19th 2005)

http://www.hartlepoolmail.co.uk/news/hiv-infected-blood-victim-loses-his-battle-for-life-1-981911

Probe into deaths of patients exposed to HIV (Hartlepool Mail, March 28th, 2007)

http://www.hartlepoolmail.co.uk/news/probe-into-deaths-of-patients-exposed-to-hiv-1-1018392

The Newcastle Journal “Bad Blood” campaign with sister paper the Chronicle began in the year 2000 more by accident than design. This author saw a letter in the Newcastle Journal by local virologist, Dr Harash Narang on variant CJD and responded in writing concerned about the risk to haemophiliacs of what was a deadly prion disease. The letter was picked up by journalist Louella Houldcroft which led to a meeting with Grayson and Longstaff and an agreement to run a joint campaign in the hope of obtaining a public inquiry, proper compensation for haemophiliacs and holding those responsible to account.

To give some background of campaigning in the 1990s…

Once the HIV haemophilia litigation concluded in 1991, there appeared to be little appetite for further media campaigning. Those with HIV were waiting to die. Haemophiliacs had signed the infamous waiver not to take further legal action for “hepatitis viruses” (no specific mention of hepatitis C on the actual Undertaking) and most had no idea that 99% of those with HIV also had hepatitis C and that it too could be deadly. If the blood of haemophiliacs had been tested, it was unknown to them and often done in secret presumably using blood taken to measure clotting factor levels without pre and post test counselling or informed consent for an HCV test. Those secretly tested for hepatitis C as in the case of Longstaff were not told they were positive sometimes for years. If they were told anything by their treating doctors, HIV lawyers and the national Haemophilia Society it was that non- A non- B (as hepatitis C was more widely known back then) was just like having a mild dose of the flu and “nothing to worry about.”

Another group of haemophiliacs were only just starting to become aware that there may be an issue with hepatitis C in the late 1980s/early 1990s. These were haemophiliacs without HIV but with hepatitis C who were beginning to show symptoms of liver disease and related problems. Haemophiliacs with HIV were not looking for hepatitis C symptoms so assumed all the health problems they were suffering were HIV related.

This author’s late husband was the first to realize the implications of the waiver in the HIV litigation in the Spring of 1994 after being told in the presence of Grayson that he was hepatitis C positive which prompted a call for his medical records only to find a positive test result recorded in 1992 and which he had never been told. This was the starting point for the couple to return to Peter’s old lawyers and launch both a public awareness campaign on hepatitis C and a legal challenge to the waiver. Unfortunately at this time most national media would not engage with the contaminated blood scandal as they were also not so aware of the serious nature of hepatitis C and considered infection of haemophiliacs “a dead story” as they had already covered HIV. This was amplified due to the denials of the then Haemophilia Society that hepatitis C was of little concern and not a matter that needed addressing.

In frustration, Grayson and Longstaff set up Haemophilia North in 1994 which later became Haemophilia Action UK to reflect the national remit as more and more haemophiliacs began contacting them through word of mouth. They were isolated, often alone and needing support. The majority of haemophiliacs at that time were hidden away, afraid to put their head above the parapet, only a handful were public and prepared to face the stigma and discrimination head on to change the public’s perception of HIV and hepatitis C. In the same year Peter Mossman (who had hepatitis C, co founded the Manor House Group with Peter Hughes and in addition, Colette Wintle set out as an independent campaigner, all were to become the best of friends. It then took a year of constant pressure to persuade the Haemophilia Society to launch their own campaign which happened very reluctantly in 1995. So to summarise, in 1994, the only haemophilia campaign groups existing at that time were Birchgrove that campaigned specifically on HIV but were later to include hepatitis C, Haemophilia Action UK, Manor House Group and Colette as an independent. This did not change until 2006 when Tainted Blood appeared on the scene and other groups began to follow.

Newcastle Journal Campaign

The Journal “Bad Blood” campaign which began in 2000 was characterised by front page eye catching headlines meant to grab attention. This was true investigative journalism and stories would feature on the front page, often with a 2 page spread inside and then in addition, the opinion page. Grayson and Longstaff went from total obscurity to being stopped on the street with messages of support as they gave up their anonymity and began to tackle prejudice and discrimination giving haemophiliacs a voice. Grayson did the background research and searched out key documents including files from the HIV litigation and evidence from the US whilst Louella interviewed important figures suggested by the couple and planned out and wrote the stories with some guidance on the direction on which to focus. All realized it was a complicated story to tell so they would need to backtrack and give some basic history of the events leading up to contamination in order to engage the reader.

One of the early stories was to interview Lord David Owen to get some background on the arguement for self -sufficiency, Owens thoughts on this and why his commitment had not been carried through. It was some years since he had engaged on this issue having become somewhat disillusioned over the failure to properly address his concerns over missing records and little effort from the Parliamentary Ombudsman to investigate.

Shortly after the launch of the Bad Blood campaign Grayson and Longstaff began working with Scottish media, similar stories would go out a day or so later but using stories of local Scottish campaigners that were prepared go on record regarding their personal experience of living with deadly viruses but didn’t have the wider campaign evidence to help validate that this was no accident but a scandal. Once a campaigner has worked on a story its very unlikely that will forget this experience as its an important step by step process achieved through meticulous planning that remains clearly in the mind. The Owen story once published in the Journal was picked up and delivered in Scotland and then by the nationals making it into the Guardian. This breathed life in the Journal campaign.

Haemophilia Action UK campaign goals were simple, a Public Inquiry, Recombinant for all, to legally overturn the hepatitis waiver in order to take a case for hepatitis C with the aim of seeking, “compensation on a parity with Eire” which Grayson and Longstaff had initiated in 1996. They also wanted to write and record a true history of the contamination of haemophiliacs with HIV, hepatitis viruses and as the years progressed including exposure to v CJD.

Over the years many of the key stories were first broken in Newcastle and the phone rang day and night as campaigners around the UK, that were starting to speak out, referred journalists to Grayson and Longstaff for a comment and details of evidence held. Some of the early emails between campaigners are still held by the couple. The years between 2000 to 2004 were particularly busy with story after story published as the Journal wanted “new angles” on the scandal which were provided week after week. Stories included the waiver, testing without permission, withholding positive test results, experimentation, missing medical records, Arkansas and Louisiana prison blood evidence, stories on the US pharmaceutical companies, gay donors, revisiting the 1975 World in Action documentary, the 1975 Dr J Garrott Allen letter, the 1982 Rizza and Bloom “cheaper than chimps” letter on using PUPS to test out infectivity of treatment, the Dr Spence Galbraith 1983 letter to remove US treatment on the shelves in the UK for fear of AIDS, the Glasgow Symposium on hepatitis viruses, Craske studies on haemophiliacs and many other stories.

Articles were often delayed as key documents were run past anxious Journal lawyers with stories alleging government negligence and serious safety violations. The Journal covered haemophiliacs’ lack of faith in the then Haemophilia Society calling them out re “conflict of interest” along with certain doctors who received payments from pharmaceutical companies. Articles featured the Judicial Review for Recombinant, filing complaints to the GMC, complaints submitted to the police at Dyfed Powys, to the Office of Supervision of Solicitors over conduct issues, gaining access to HIV litigation documents at various stages, petitioning the European parliament, fighting for the right for previously excluded HIV positive haemophiliacs to be considered for a liver transplant, calls to investigate missing records, retained organs, the legal case the couple assisted in Scotland where a payment was made direct from a pharma company and exposure to v CJD to name but a few.

The paper followed meetings with ministers, parliamentary debates, Early Day Motions and the lies told over the Eire settlement, with ministers falsely claiming Ireland had paid out on liability. Successes were also duly reported, the phasing in of Recombinant (at first deemed too expensive), increased payments to Macfarlane Trust beneficiaries including payments to bereaved partners, and the extension of grants, the announcement of the Skipton Fund (worked on by the couples barrister, once government realized the waiver would not stand. In addition to this, during the early 2000s, Grayson and Longstaff persuaded US lawyers to take on their case and on the back of Peter’s legal aid add around 300 other haemophiliacs that could prove treatment batch numbers and fit certain requirements to begin their attempt to take a case in the US.

During this time, the work of Grayson and Longstaff with the Journal did not go unnoticed by civil servants at the Blood Policy Unit replying to letters and accusations on behalf of ministers. One internal document dated 22nd March 2002, covered Grayson in some detail, here are some excerpts as follows:-

Grayson is the partner of a co-infected haemophiliac (he has HIV, hep B and C). She is very articulate and speaks very forcefully. She maintains that the government imported plasma “from the slums of Africa and skid-row America” which was then used to treat haemophiliacs and hence infect then with HIV and hepatitis C. In the past she has produced a letters from the sister of an alleged USA prisoner who she claims was a plasma donor despite having hepatitis B and C.

Ms Grayson is convinced there is a conspiracy to hide information about the importation of blood products in the 1970s. She has been in contact with Lord Owen who was Minister for Health at that time and who made attempts to make the UK “self sufficient” in blood products so that imports from the US could cease. The local newspaper in Newcastle “The Journal” has covered her story in depth and continues to publish articles.

She is also campaigning for a full public inquiry, compensation for haemophiliacs infected with hepatitis C and provision of Recombinant clotting factors for all haemophiliacs (Not just for new patients and those aged up to 16 as currently agreed.

At the end of the document the following is highlighted, under the title,

Documents referred to in Ms Grayson’s letter.

We have concerns that Ms Grayson has evidently obtained Government documents from the 1970s/80s and is basing some of her arguements on information gleaned from these papers. Officials have looked at some files from this period to establish how the money allocated by Lord Owen was spent, and papers on this issue have been passed to the Haemophilia Society. However given pressure on time and resources, we have not looked in detail at the decisions made during that period an exercise requiring several weeks of work. We have therefore not responded to the sum of the detailed questions in Ms Grayson’s letter which are partly based on those documents. We recognize that this is not a sustainable position and will provide further advice on handling shortly.

We recommend that PS (PH) decline this request for a meeting but provide a response on the main issues raised in Ms Grayson’s letter.

Grayson’s group Haemophilia Action UK was described as “a very active, Newcastle based campaign group.”

In 2003, it was noted under the heading, Some factual points gleaned: that,

“A public enquiry is a stated aim of the English Haem Soc. but has not been a priority for the cross party parliamentary group up til now. However Lord Morris is apparently becoming more aligned with the Newcastle group (Carol Grayson.)

The word inquiry was spelt incorrectly as enquiry. The comment however was in fact correct as Lord Morris of Manchester, First Minister for Disabled and President of the Haemophilia Society would ring Grayson and fellow campaigner Colette Wintle before every Westminster debate and much of the content of the debates in Hansard for years reflect their research, actions and thinking.

In one 2004 internal government exchange an off the cuff comment by Grayson led to her being viewed as a potential threat to government after she jokingly asked what did she have to do to be taken seriously, did she have to scale Big Ben as Cat Woman. She has been described by government officials as “aggressive” and “badgering” with one Government communication stating,

“You will note her veiled threat to dress up as catwoman and scale Big Ben. Such threats are not to be taken lightly. Two of her fellow campaigners in Scotland threw cans of red paint at the walls of the new Scottish parliament building on the day it opened as part of their push for a public enquiry.”

In response to Haemophilia Action UK’s relentless campaign and a dossier of documents sent jointly with the Journal, government agreed to write a report which became known as the “Self-Sufficiency Report.” In his 10th May, 2022 statement to the Infected Blood Inquiry, Richard Gutowski wrote of his time in office at the Blood Policy Unit from 2003 to 2004 referring to this report,

 “Continuing to handle the varied infected blood issues, including the report published as ‘Self-Sufficiency in Blood Products in England and Wales: A Chronology from 1973 to 1991 (the self sufficiency report and enquiries from the press and campaign groups. The strength of feeling and effectiveness of those campaigning on the infected blood issues meant that at one time I was told my team received the highest volume of correspondence in Whitehall. At another time, I held the unenviable record for the longest outstanding Private Office Correspondence; this reflected the lack of team resources to which I have already referred. One aspect of the infected blood issues was Lord Owen’s concerns regarding papers from his time in office.”

Grayson later critiqued this report for her Masters dissertation at Sunderland University for which she received a distinction and was awarded the Economic and Social Research Council (ERSC) Michael Young Prize plus the Committee of Ten Thousand (COTT) Action = Life Award presented at an AIDS conference in Washington DC. Evidence from her dissertation was formed the basis of a 2007 BBC Newsnight report which was nominated for a Royal Television Society (RTS) award for best Newsnight of that year. The Self Sufficiency Report was later withdrawn as a “whitewash” as detailed by the BBC.

Contaminated Blood report “full of lies” (BBC, 19th Dec, 2017)

https://www.bbc.co.uk/news/health-42410301

The Journal continued to report on “Bad Blood” throughout the privately funded Archer Inquiry set up in 2007 by Lord Archer of Sandwell. Although the report was welcomed and echoed Grayson’s recommendations, compensation on a parity with Eire was blocked due to the lies told by government that Eire had paid out due to legal liability. In fact a Judicial Review won by Andrew March supported by Grayson’s research from 2004 highlighted that Eire paid out on the grounds of “extraordinary suffering” for “loss and need” at court levels but out of court with no legal liability established. The British government however still refused to compensate and continued the lies for years to come. The Journal continues to report in the present day on the Infected Blood Inquiry through journalist Sam Volpe and like the Northern Echo received an award for its investigative journalism and dedicated campaigning. The following is a collection of Journal media Grayson has compiled. It is possible some reports may be missing as the old website was replaced and earlier links disappeared with the passage of time.

Newcastle Journal and Chronicle “Bad Blood” Articles From 2000 Onwards

Year 2000 Media

Bad Blood Scandal…(Lack of funding blamed for crisis: Doctors “forced to use US supplies” (Newcastle Journal,? August, 2000, Hardcopy Archived)

Blood Scandal: Victim who claims he was infected with lethal virus from transfusion wins the right to sue government (Newcastle Journal, August 5th 2000, Hardcopy Archived)

This dying man fights a great betrayal..A few survivors gain hope from legal victory (Pete was anonymous as “John”) (Newcastle Journal, August 5th, 2000, Hardcopy Archived)

Bad Blood… How the scandal developed and Haemophilia factfile (Newcastle Journal, August 5th, 2000, Hardcopy Archived)

Bad Blood, Explanation needed (Newcastle Journal, Letters and Opinion, August 5th, 2000, Hardcopy Archived)

Prisoner was turned into killer-by-proxy… Linda Miller, Bud Tant story, Arkansas (Newcastle Journal, August 7th, 2000, Hardcopy Archived)

Blood Controversy..  Experts refute claims over US plasma … Self-Sufficiency (Newcastle Journal, August 8th, 2000, Hardcopy Archived)

Transfusion gave me HIV and hepatitis C, (Newcastle Journal, August 9th 2000)

http://www.rense.com/general3/hv.htm

Boy died in blood scandal, 11 year old killed by AIDS virus (Newcastle Journal, August 14th, 2000, Hardcopy Archived)

100 patients go to court (whole blood cases plus hep c waiver, Paul Saxon)… Bad Blood Scandal (Newcastle Journal, August 19th, 2000, Hardcopy Archived)

Legal aid victory for HIV haemophiliac campaigners (? Chronicle, Journal or Northern Echo, August 2000, Hardcopy Archived)

Infected blood “was brought from Africa’… Expert discovered unethical trafficking (Newcastle Journal, August 28th, 2000, Hardcopy Archived)

Patients put at risk in protest -Two haemophiliacs demand alternative (treatment) Newcastle Journal, October 6th, 2000, Hardcopy Archived)

Father’s SOS to North for sick son… Reddie case (Newcastle Journal, October 24th, 2000, Hardcopy Archived)

Transfusion gave me HIV and hepatitis C… New Zealand man infected on holiday (Newcastle Journal, 2000, Hardcopy Archived)

Haemophiliacs misled, claims lawyer (Newcastle Journal, November 3rd , 2000, Hardcopy Archived)

The death of a Cummins Inmate from untreated hepatitis and beatings…Linda Miller story…( Newcastle Journal, December 5th, 2000, Hardcopy)

Lack of funding blamed for crisis… Doctors “forced to use US supplies” (Newcastle Journal, December 2000, Hardcopy Archived

Year 2001

Blood Money: Haemophiliacs infected through bad blood transfusions receive compensation in Ireland, while the UK government refuses to hold an inquiry (Newcastle Journal, January 24th, 2001, Hardcopy Archived)

A public inquiry is right and just (Newcastle Journal, Voice of the north Opinion, January 24th 2001, Hardcopy Archived)

Blood victims spell out case for inquiry (Newcastle Journal, January 24th 2001, Hardcopy Archived)

Health Secretary (Milburn) once backed compensation (Newcastle Journal, February 20th, 2001, Hardcopy Archived)

HIV, hepatitis- and now you may have CJD (Newcastle Journal, March 19th, 2001, Hardcopy Archived)

Crusading lawyer backs public inquiry on blood (Newcastle Journal, April 2nd, 2001, Hardcopy Archived)

Victims cry out for blood justice now… Public Inquiry call on infected plasma (Newcastle Journal, April 4th 2001)

Owen’s outrage at failure over blood (Newcastle Journal, August 2nd 2001, Hardcopy Archived)

Our battle goes on, say casualties of bad blood (Newcastle Journal, August 2nd, 2001, Hardcopy Archived)

Probe call at blood charity: Haemophiliacs’ anger over Society’s links to drug firms (Newcastle Journal, August 24th, 2001, Hardcopy Archived)

Haemophilia Society faces revolt from Sufferers: Record which shames a nation (Newcastle Journal, August 24th, 2001, Hardcopy Archived)

Questions must be resolved (Newcastle Journal, August 24th, 2001)

Pressure rising over bad blood (Labour peer tells Blair Inquiry into scandal is crucial (Newcastle Journal, August 31st, 2001, Hardcopy Archived)

Labour peer calls for blood inquiry (Newcastle Journal, September 7th, 2001, Hardcopy Archived)

Tainted Blood: Why an Inquiry is a must (Newcastle Journal, Opinion, September 3rd, 2001, Archived)

“Worst ever NHS tragedy” (Newcastle Journal, December 5th, 2001, Hardcopy Archived)

Year 2002

Haemophiliacs hit out at own society… Anger over support for paid blood (Newcastle Journal, January 7th 2002, Hardcopy Archived)

Inquiry plea to minister Yvette Cooper (Newcastle Journal May 15th, 2002, Hardcopy Archived)

http://209.157.64.201/focus/f-news/698393/posts

Agonising wait for treatment (Newcastle Journal via Focus, August 5th, 2002)

http://209.157.64.201/focus/f-news/711343/posts

Plan for using US blood sparks new fear (Newcastle Journal via Free Republic, August 8th, 2002)

http://www.freerepublic.com/focus/news/735665/posts 

Criminal probe into bad blood considered
(Newcastle Journal via Free Republic, Aug 14th, 2002, Hardcopy Archived)

http://www.freerepublic.com/focus/f-news/735630/posts

A market in blood (Newcastle Journal, Opinion, August 17th, 2002, Hardcopy Archived)

Plan for using US blood sparks new fear (Newcastle Journal, August 17th, 2002, Hardcopy Archived)

Former health minister calls for Inquiry, (Newcastle Journal, August 20th, 2002, Hardcopy Archived)

Owen demands inquiry into infected blood scandal (Guardian via Focus, August 19th 2002, Hardcopy Archived)

https://www.theguardian.com/society/2002/aug/19/NHS.medicineandhealth

Virus “can spread by blood transfusions” West Nile (Newcastle Journal, August 20th, 2002, Hardcopy Archived)

When blood and money circulate (Newcastle Journal, December 20th 2002, Archived)

Peril of paid donors (Newcastle Journal, Voice of the North, December 20th, 2002, Hardcopy Archived)

Year 2003

Silence over secret killer… Patients kept in the dark over disease. Calls for a Public Inquiry intensify after new revelations over haemophiliacs plus Opinion, A breakdown of trust (Newcastle Journal, January 20th, 2003, Hardcopy Archived)

Whitehall launches probe in blood row (Newcastle Journal, January 24th 2003, Archived)

CJD doc jets off  (Newcastle Journal, March 9th, 2003, Hardcopy Archived)

Lawyer allegedly posted cannabis (Journal via Google Groups, March 18th 2003)

https://groups.google.com/forum/#!msg/uk.rec.drugs.cannabis/ouN8V1tyoy0/Ke77r1JC-eIJ

GMC U-turn in blood tests row (Newcastle Journal, April 14th 2003, Archived)

Fight goes to court (Newcastle Journal, May 30th, 2003, Hardcopy Archived)

Court review agreed: Judge grants legal aid over blood products (Newcastle Journal, July 18th, 2003, Hardcopy Archived)

Inquiry into HIV blood cash trail (Newcastle Journal, July 28th, 2003, Hardcopy Archived)

Police called in bad blood battle (Newcastle Journal, October 18th, 2003, Hardcopy Archived)

Delay in bad blood decision. (Newcastle Journal, 22nd November 2003)

Bad blood patient loses case: Treatment claim fails (Newcastle Journal, December 9th 2003, Hardcopy Archived)

Blood Victims CJD nightmare (Journal, via Questia, December 18th 2003)

https://www.questia.com/read/1G1-111373862/blood-victim-s-cjd-nightmare

Year 2004

Row over “insult” to blood victims… (comparison with Eire) (Newcastle Journal, March 1st 2004, Hardcopy Archived)

 Year 2005

Blood victims “are ignored”: Anger at awareness drive (Newcastle Journal, March 19th 2005, Hardcopy archived)

Peter’s fighting on beyond his death (Newcastle Journal via Free Library April 19th 2005, Hardcopy)

https://www.thefreelibrary.com/Peter’s+fighting+on+beyond+his+death.-a0131671472

Brave to his dying day: Campaigning haemophiliac loses fight for life, (Newcastle Journal, April 2005, Hardcopy Archived)

Blood fight man loses his brave battle for life (Newcastle Journal, April 20th, 2005, Hardcopy Archived)

Friends’ tributes to Peter (Newcastle Journal, April 23rd, 2005, Hardcopy Archived)

Inmates of US jails were paid to donate blood to  patients: Peter was given infected blood from prisoners (Evening Chronicle, November 10th 2005, Hardcopy Archived)

Health report to reopen controversy on infected blood: Widow is to learn how husband got killer transfusion (Evening Chronicle, December 22nd, 2005, Hardcopy Archived)

https://www.chroniclelive.co.uk/news/north-east-news/widow-learn-how-husband-killer-1604642

Year 2006

Blood transfusions probe a whitewash- widow (Newcastle Journal, Feb 28th 2006, Hardcopy archived)

Year 2007

Contaminated blood inquiry is announced: Investigation planned into treatment disaster (Newcastle Journal, February 20th, 2007, Hardcopy Archived)

A public health disaster: A North MP last night demanded health chiefs open their records to an inquiry into the use of contaminated blood in the NHS (Newcastle Journal, February 21st 2007, Hardcopy)

https://www.questia.com/newspaper/1G1-159571524/a-public-health-disaster

Blood widow is to testify, Archer (Chronicle, April 18th 2007)

http://www.chroniclelive.co.uk/news/north-east-news/blood-widow-is-to-testify-1492051

Blood case same as US syphilis scandal (Newcastle Journal, April 19th 2007)

http://www.thejournal.co.uk/news/north-east-news/blood-case-same-syphilis-scandal-4531270

Bad blood risk advice ignored: Haemophiliacs condemned to death (Newcastle Journal, May 26th, 2007 Hardcopy Archived, there was Opinion also not in collection)

Year 2008

Year 2009

Widow hails blood inquiry (Find Articles, February 20th, 2009) (Archived)

http://findarticles.com/?noadc=1

Report due on contaminated blood scandal (Newcastle Journal, 23rd February 2009)

http://www.thejournal.co.uk/news/north-east-news/report-due-contaminated-blood-scandal-4488447

Journals Bad Blood campaign praised (Newcastle Journal, 24th February 2009)

http://www.thejournal.co.uk/news/north-east-news/journals-bad-blood-campaign-praised-4488562

The past can’t be re-done but now there is hope; Carol Grayson’s Husband Died in a shocking NHS bad blood scandal. Chris Robinson speaks to her about her battle for justice (Chronicle (via Questia) February 24th 2009)

https://www.questia.com/read/1G1-194324399/the-past-can-t-be-re-done-but-now-there-is-hope-carol

Praise for press campaign nearly 10 years on (Hold The Front Page) March 2nd 2009)

http://www.holdthefrontpage.co.uk/2009/news/praise-for-press-campaign-nearly-ten-years-on/

Research prize for blood campaigner (Newcastle Journal, 14th March 2009)

http://www.thejournal.co.uk/news/north-east-news/research-prize-blood-campaigner-carol-4485637  

Fight for justice for infected blood victims will go to Europe (Newcastle Journal, 21st May 2009)

http://www.thejournal.co.uk/news/north-east-news/fight-justice-infected-blood-victims-4482079

Year 2010

North east widow angered at leaked papers on blood scandal costs (Newcastle Journal, 24th March, 2010 Archived)

http://www.thejournal.co.uk/north-east-news/todays-news/2010/03/24/widow-angered-at-leaked-papers-on-blood-scandal-costs-61634-26096475/2/

Carol Grayson hits out at government over blood scandal (Newcastle Journal, October 15th 2010)

http://www.thejournal.co.uk/news/north-east-news/carol-grayson-hits-out-government-4447822

Year 2011

Year 2012

Widow bids for Oscar’s glory: Campaigning ex-nurse funds film out of compo cash (Sunday Sun, February 26th, 2012, Hardcopy Archived)

Year 2013 

Year 2014

Year 2015  

Newcastle widow left cynical over PMs apology (Newcastle Chronicle, 26th March 2015)

http://www.chroniclelive.co.uk/news/north-east-news/newcastle-widow-left-cynical-pms-8922123

Year 2016

Year 2017

Contaminated blood scandal that infected Jesmond man with HIV deliberately covered up (Newcastle Chronicle, 26th April 2017)

http://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-scandal-infected-jesmond-12944741

A bloody disgrace (Chronicle, April 27th, 2017)

https://www.thefreelibrary.com/A+bloody+disgrace.-a0490690818

What is the Contaminated Blood Scandal? (Chronicle, July 11th 2017)

http://www.chroniclelive.co.uk/news/north-east-news/what-contaminated-blood-scandal-killed-13317170

Newcastle wife of contaminated blood victim calls for Hillsborough -style inquiry (July 11th 2017)

http://www.chroniclelive.co.uk/news/north-east-news/newcastle-wife-contaminated-blood-victim-13316750

“We need answers” North Shields dad infected in contaminated blood scandal speaks out (Newcastle Chronicle, July 15th, 2017)

https://www.chroniclelive.co.uk/news/health/we-need-answers-north-shields-13335244

Contaminated blood scandal: Were vital records from the 1970s and 1980s destroyed?

Newcastle widow is “furious” after learning key documents from the Haemophilia Society are “destroyed or missing” (Chronicle Live, Sept 13th 2017)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-scandal-were-vital-13614220

Contaminated blood scandal: Victims and their families win ruling to seek damages (Chronicle Live, September 26th 2017)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-scandal-victims-families-13678854

Bad blood scandal: Leaked papers “show evidence of a cover-up”, campaigners say (Newcastle Evening Chronicle Live, October 25th 2017)

https://www.chroniclelive.co.uk/news/north-east-news/bad-blood-scandal-documents-show-13809809

Year 2018

Bad blood scandal: Judge promises “thorough examination” after being appointed to lead inquiry (Newcastle Chronicle Live, February 18th, 2018)

https://www.chroniclelive.co.uk/news/north-east-news/bad-blood-scandal-judge-promises-14265164

Contaminated blood scandal: Families and campaigners score another small victory ahead of inquiry (Newcastle Chronicle Live, March 29th, 2018)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-scandal-families-campaigners-14472203

Contaminated blood scandal: Newcastle widow calls for “justice to be delivered” (Newcastle Chronicle, July 3rd, 2018)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-scandal-newcastle-widow-14860924

Contaminated Blood Inquiry: Those who knew haemophiliacs were given deadly blood transfusions “must pay” (Journal, September 25th, 2018)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-inquiry-those-who-15200482

Contaminated blood inquiry: Government says “sorry” and admits there may have been a “cover-up” (Newcastle Chronicle, September 26th 2018)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-inquiry-government-says-15205710

Year 2019

Infected blood inquiry: Wife of NHS blood contamination victim demands action (Chronicle, 30th April 2019)

https://www.chroniclelive.co.uk/news/health/infected-blood-inquiry-carol-grayson-16205404

Man’s 35-year nightmare after being infected with Hepatitis C after Jesmond Dene skating accident (Chronicle Live, 20th June, 2019)

https://www.chroniclelive.co.uk/news/north-east-news/mans-35-year-nightmare-after-16461441

Year 2020

Infected blood scandal: Newcastle widow hopeful victims will finally get compensation (30th Jan, 2020)

https://www.chroniclelive.co.uk/news/north-east-news/infected-blood-scandal-newcastle-widow-17653749

Victims of infected blood scandal were ‘failed’ by medical profession and politicians – Lord Owen (Chronicle Live, 23rd September 2020)

https://www.chroniclelive.co.uk/news/north-east-news/victims-infected-blood-scandal-were-18979379

Year 2021

Infected Blood Inquiry: Newcastle doctor said Government and NHS made ‘fatal mistake’ (Chronicle Live, 3rd Feb, 2021)

https://www.chroniclelive.co.uk/news/north-east-news/infected-blood-inquiry-newcastle-doctor-19755959

Imported blood warning revealed (Chronicle, 4th Feb 2021)

https://www.pressreader.com/uk/the-chronicle-9c96/20210204/281840056349661

‘It’s huge’: Government to increase financial support for contaminated blood scandal victims (Chronicle Live, 26th March 2021)

https://www.chroniclelive.co.uk/news/north-east-news/blood-scandal-compensation-jesmond-government-20255341

Matt Hancock pledges compensation to contaminated blood scandal victims if inquiry calls for it (Chronicle Live, 24th May 2021)

https://www.chroniclelive.co.uk/news/health/matt-hancock-pledges-compensation-contaminated-20666032

Former health minister says Margaret Thatcher’s ‘attitude to AIDS’ blocked progress on blood scandal compensation (Chronicle Live, 22nd September 2021)

https://www.chroniclelive.co.uk/news/health/matt-hancock-pledges-compensation-contaminated-20666032

Year 2022

Northumberland victim of infected blood scandal worried Sue Gray investigation will cause delays (Chronicle Live, 24th Jan, 2022)

https://www.chroniclelive.co.uk/news/north-east-news/sue-gray-partygate-infected-blood-22827674

‘Embarrassingly large’ stocks of available UK blood products weren’t used by Newcastle doctors, Infected Blood Inquiry hears (Chronicle Live, 10th Feb 2022)

https://www.chroniclelive.co.uk/news/health/infected-blood-newcastle-inquiry-transfusion-23035073

Jesmond infected blood campaigner’s anger over being “left out” of key compensation meeting documents. (Chronicle Live, 14th Feb, 2022)

https://www.chroniclelive.co.uk/news/health/contaminated-blood-carol-grayson-francis-23091842

“Don’t treat us with disdain” -Blood scandal victims demand publication of compensation report (Chronicle 21st March 2022)

https://www.chroniclelive.co.uk/news/health/dont-treat-disdain-blood-scandal-23452733

Government changed its mind on Infected Blood Inquiry “because of pressure from campaigners” (Chronicle, 30th March 2022)

https://www.chroniclelive.co.uk/news/north-east-news/infected-blood-inquiry-documents-revealed-23536730

“I’m sorry people have had to wait 30 years” former health minister tells Infected Blood Inquiry (Chronicle, 20th May, 2022)

https://www.chroniclelive.co.uk/news/health/health-minister-infected-blood-inquiry-24013950

Infected blood scandal victims should be compensated at least £100,000 reports suggest (Chronicle, 8th June, 2022)

https://www.chroniclelive.co.uk/news/health/infected-blood-scandal-victims-compensation-24170895

Newcastle haemophiliacs should have been told they were at “clear and special risk of AIDS”, inquiry hears (Chronicle 10th June, 2022)

https://www.chroniclelive.co.uk/news/health/blood-inquiry-newcastle-haemophiliacs-aids-24192542

Carol Grayson (Haemophilia Action UK) copyright

An important point to make regarding reporting on the contaminated blood scandal, although North-East media has been exceptional, this is not so for some of the nationals that dismissed that there was a story to tell or grossly misreported events some by accident, others by design. For example a large percentage of media reporting since 2017 have been factually incorrect.

Back in 2005, Grayson worked closely with Sir Patrick Jenkin to save all existing government blood policy files in government archives, now held at the National Archives, Kew and other repositories. At that time the government agreed no further documents would be destroyed. These included tranches from look back studies on hepatitis, v CJD and decades of government blood policy including the documents used in the Self Sufficiency Report, discussions on the HIV litigation and related documentation of how this material had been saved.

Grayson also discovered and returned in 2006, copies of HIV litigation documents that government destroyed including some of Lord Owen’s papers. Unfortunately, unscrupulous media have since reported that these documents have been “newly discovered” by new campaigners from 2017 when in fact Grayson discovered and has been using these documents for years, sometimes decades, plus returned some to the Department of Health via a lawyer which were initially released in batches onto a website, later transferred to NA Kew and which can now can be accessed under Freedom of Information by other campaigners. It is a travesty of justice against the wider haemophilia community to misreport dates, alter timelines and not to reference researchers.

Once again the government did not keep its word and the legal department destroyed not the evidence itself but the series of letters documenting Grayson returning documents to the Department of Health solicitors and the circumstances of that return, fortunately Grayson kept copies or she would have been conveniently wiped from history.

So returning to representations of contaminated blood history, the message to haemophiliacs and their families is to read carefully every story in the media, check your facts, question and don’t be duped with a fake story however “real” it may seem. It is important to note that “spies” posing as campaigners were embedded in the US haemophilia campaign for justice. Some campaigners were sought out and funded by pharma companies and others used to present an altered version of history. The vast majority of what is being described by UK media as “new” evidence has been used before, presented to minister after minister, in letters, emails, debates, old media and face to face meetings. The biggest scandal since infecting haemophiliacs has been to block and ignore that evidence, deny victims a public inquiry and delay justice and compensation for decades until most infected and some affected are dead. However, despite massive obstacles placed before them, long standing campaigners infected and affected have refused to give up, they will have their day of justice and haemophilia history will be recorded correctly and preserved safely for future generations to read.

Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad.  She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Righ

About Carol Anne Grayson

Blogging for Humanity.... Campaigner/researcher global health/human rights/drones/WOT/insurgency http://www.esrc.ac.uk/ESRCInfoCentre/PO/experts/Health_and_Wellbeing.aspx Exec Producer of Oscar nominated documentary Incident in New Baghdad, currently filming on drones.
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