Dear Kate (Burt)

Yesterday Baroness Virginia Bottomley gave evidence to the Infected Blood Inquiry as Minister of State (1989-1992) and Secretary of State for Health (1992-1995). The Haemophilia Society Public Inquiry Team Account on Twitter tweeted,

Baroness Bottomley said in her ‘humble view’ there was no negligence involved in the contaminated blood scandal. She said: ‘If treatment is given in good faith according to the best scientific advice at the time, then it is not negligent.’

As a long standing haemophilia campaigner with whom the APPG for Haemophilia and Contaminated Blood refuses to engage and has indeed been blocked by Dame Diana Johnson MP, I am appalled that Sir Peter Bottomley (current Father of the House) was ever allowed to sit on the APPG, given the role of his wife regarding the haemophilia litigation of 1991, defending the government’s “no negligence” stance. It is a total “conflict of interest”. I have gone back through Bottomley’s Twitter account in recent months and find it most odd that although he tweets on other key issues, such as Windrush and Ukraine, there is nothing on Contaminated Blood especially given we are now in the midst of the Infected Blood Inquiry set up under the Chair of Sir Brian Langstaff?

I wish to notify the Haemophilia Society officially that following a meeting fellow campaigner, Colette Wintle and I had with Anne Milton (Health) at Westminster in 2010 the word “inadvertent” infection was removed from use regarding the infection of haemophiliacs with HIV and hepatitis C in the 1970s and 80s as totally inappropriate. Inadvertent means, “done, or happening unintentionally” according to the Cambridge dictionary. This was minuted and Anne agreed the minutes were accurate and that we could use them. What happened to haemophiliacs was no accident, rather a series of disastrous decisions and errors and is allegedly due to the “negligence of public bodies.” As Andy Burnham (Former Secretary of State for Health) highlighted, this is also “a criminal cover-up on an industrial scale.”

It is untenable that Sir Peter Bottomley remains on the APPG when his wife is maintaining her stance of “no negligence” DESPITE the removal of the word “inadvertent” infection, 12 years ago. The Inquiry has been shown document after document detailing serious safety violations regarding factor concentrates from the 1991 HIV litigation, multiple other sources and including US legal depositions. Indeed Colette and my late husband Pete were part of the “dumped” treatment cases. My husband received factor concentrates manufactured from the plasma of Arkansas donors AFTER the plasma centre was closed down on the grounds of safety and this treatment was NEVER withdrawn in the UK. Pete’s batch numbers were traced back to source and an HIV infected donor was identified through US lawyers. This was just one of many gross safety violations.

If the APPG was truly sincere in fighting for justice for the haemophilia community, it would have engaged and worked jointly with those haemophilia campaigners fighting for over 3 decades that hold key evidence not just those that either hold little evidence themselves or are intent on rehashing my earlier research evidence as new, creating false timelines of discovery and distracting away from truth and justice.

In the past, the (then) Haemophilia Society made some gross errors which will have no doubt contributed to the death of its members. The most obvious being the fight to keep US plasma on the shelves in the UK at a time when Dr Spence Galbraith (Public Health Laboratory Service) was pleading with government officials that this must be immediately withdrawn due to the risk of AIDS. As someone he trusted and with whom he shared his documents, phone calls and was invited to visit him at his home, I can say that this haunted him until the day he died.

As you know I make a distinction between the Haemophilia Society today that is working hard to support its membership and campaigners and the Society of old.

The Haemophilia Society Public Inquiry Team account also tweeted, yesterday,

Baroness Bottomley said: ‘We could not accept liability if treatment is given according to the science at the time and in good faith, as tragic as it is.’

Let me address this issue once again. Baroness Bottomley appears unaware that in the 1960s, the pharmaceutical companies were WARNED of the dangers of pooled plasma which had already been known for decades. They were WARNED by experts including Dr J Garrott Allen that to put factor concentrates on the market without first finding a way to eliminate hepatitis viruses would be catastrophic for haemophiliacs. It was done the wrong way round!

First you invest in the technology, (and if you haven’t yet developed it, you must delay your product) as safety comes before profit. Then when you are satisfied you have the technology to remove deadly viruses you put your product on the market. We were not talking of a product such as cryoprecipitate made from a handful of volunteer donors here but a product manufactured from US plasma pools that were to reach as high as 400,000 paid “high-risk” donors. These included skid-row donors, drunks and drug addicts in Central America where they were over-bled so much, the donors themselves collapsed from weakness and ill health., their bodies depleted of vital nutrients.

Then there were the prison donors with a whole catalogue of safety violations such as falsifying names of prisoners known to have hepatitis using names from an Arkansas telephone directory so they could sell their infected blood.

In addition, there was the targeting of gay men coming out of the bath houses in San Francisco’s Tenderloin district for their “hepatitis rich” plasma for research into hepatitis B, then using the surplus to top up the factor concentrate plasma pools. Hepatitis B was used as a market for AIDS in gay men before testing became available. Just 3 of many examples.

Lets consider another historical example outside of haemophilia and factor concentrates… Supposing a company wanted to put a plane onto the market for commercial journeys in the early days of aviation and they said, we want passengers to fly with us but we don’t yet have the technology to keep a plane up in the air for the entirety of your journey….and there is a 99% chance the plane will drop out of the sky and the majority of those flying will be severely injured or die on route.  It would be viewed as absolute madness and criminal to attempt such a journey with commercial passengers.

Yet this is what happened with haemophiliacs and pooled plasma in the form of commercial factor concentrates. Haemophiliacs were experimented on in unethical trials, not told of the huge risk of viral infection or where plasma was being sourced. Quite the opposite, my late husband’s parents were informed in writing in 1973 by the treating haematologist Dr Peter Jones, that the new factor concentrate treatment “could do nothing but good for the boys and for other patients.”

The arguement that haemophiliacs would have died without factor concentrates does not stand. Once cryoprecipitate was introduced, life expectancy for haemophiliacs was not far off from the average life expectancy of a person without haemophilia in the general population. It may not have been the most convenient of treatment but it did work for most.

My husband Pete and brother in law Stephen were killed as a result of the viruses contained in factor concentrates highlighted on their death certificates. Haemophiliacs were given a product made from pooled plasma that hepatitis experts had warned the pharmaceutical companies in the 1960s was guaranteed to infect them, with an almost 100% hepatitis infection rate, let alone the likelihood of new and unknown viruses emerging. What was done to haemophiliacs was dangerous and allegedly criminal and that is why there are so many dead and still dying as a result of their treatment!

We cannot have MPs and others sitting on the APPG that still think the infection of haemophiliacs was “inadvertent” infection…it is monstrous! This is an opportunity for the Haemophilia Society to help make amends for past mistakes. The APPG must make a public statement that all their members acknowledge and support this change of narrative from 2010 or I ask that the Haemophilia Society pull their secretariat from the APPG. We cannot go back over and must move forward.

I challenge the Society also to find one public reference to my multi awarded research on Contaminated Blood by the APPG… surely if they truly support the rights of haemophiliacs, they would wish to engage with those that hold the actual evidence of safety violations and abuses against haemophiliacs… or is this group engaged in yet another “damage limitation” exercise maintaining the lies of successive governments over decades?

We must not forget the late Lord Morris of Manchester (First Minister for Disabled) and past President of the Haemophilia Society who worked tirelessly WITH campaigners, shoulder to shoulder, side by side for years, in fact the result of that is documented in past copies of Hansard as he would ring Colette and I to help brief him on updates before any debate. When he died, the APPG was taken over by those who seem determined to obliterate the work of the long standing campaigners that kept the Contaminated Blood campaign going for decades. It is the most bizarre of circumstances!

I look forward to your prompt response and thank-you for your ongoing support to those infected and affected as a result of the Contaminated Blood scandal.

With thanks

Kind Regards

Carol Grayson (Haemophilia Action UK

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 Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”