When the privately funded Archer Inquiry concluded with a final report in 2009, Lord Archer of Sandwell recognized the importance of haemophiliacs being compensated for ALL viruses. The Inquiry was set up to investigate how thousands of haemophiliacs with an inherited blood clotting disorder became infected with multiple deadly viruses during the 1970s and 80s through their factor concentrate treatment.
Therefore, it was with some concern that this author Carol Grayson and her campaign colleague Colette Wintle noted what appeared to be largely an exclusion of hepatitis B regarding compensation from the recent report of Sir Robert Francis QC, titled, Compensation and redress for the victims of infected blood: recommendations for a framework (7th June, 2022). This can be read in full on the following UK government website,
Francis was asked questions on hepatitis B by Jenni Richards QC for the Infected Blood Inquiry which began in 2018 under the Chair of Sir Brian Langstaff and indicated that he had not received representations on hepatitis B from campaigners and their supporters.
This was certainly not the case from Grayson and Wintle who referred to hepatitis B in their written submission of issues to be included when looking at compensation. This was also discussed in a phone conference call between Sir Robert Francis and the two long standing activists on contaminated blood. They wrote the following within their document,
Compensation for each infection and to partners/carers looking after those infected
Haemophiliacs and some of their partners and children were infected with deadly viruses and all were affected which caused immense physical harm and psychological damage.
Haemophiliacs were infected with multiple viruses, HIV and hepatitis B and C and as Lord Archer stated in his 2009 report must be compensated for each and every virus. We point out that hepatitis B infection can be a serious condition and had attention been paid to finding a way to virally inactivate hepatitis B BEFORE factor concentrates were put on to the market (even if that meant a delay) it would have also have had the effect of later eliminating hepatitis C and HIV, avoiding further infection.
We point out that when AIDS emerged there was no effective treatment so haemophiliacs had to live with the knowledge that they were being given a 5 year life expectancy and for many that turned out to be correct. Those who survived AIDS were suffering ever deteriorating health with little hope of leading a normal life. 99% of haemophiliacs with HIV were also co-infected with hepatitis C, and many had also had hepatitis B. Those who escaped HIV infection and had hepatitis C were often co-infected with hepatitis B.
In the early years, treatment given to treat HIV and hepatitis could also come with severe health risks and intolerance to treatment with regimes such as AZT and Interferon. It is only in more recent years that treatment has improved but the damage is already massive if not deadly for most.
As stated previously, co-infection makes treatment of a haemophiliac much more difficult. One example is that drugs taken for life to control the HIV virus may impact on the liver of a person with hepatitis C. Another example is that for years a person with hepatitis C was automatically denied any chance of a liver transplant due to having to take immune-suppressant drugs after transplantation. Many haemophiliacs died without hope of a transplant.
In addition, government and some doctors playing down the serious nature of infections which meant that there were often delays of years in referring haemophiliacs over to an infectious diseases ward and a specialist liver unit. Haemophiliacs had the stress of fighting for referrals that often came too late. In addition, there are different strains of HIV and different genotypes of hepatitis C some known to be much more virulent than others and this can cause further health and treatment related problems. The majority of haemophiliacs weren’t only infected once (which was bad enough) but for being reinfected almost every time they took treatment until heat -treatment was introduced so the impact on the immune system, liver and body in general is enormous.
When haemophiliacs inadvertently infected a family member if they had not been told they were positive, they then had to live with the impact on that person and the guilt.
Partners who cared for haemophiliacs had to take on a dual role of being both parents to children, father and mother as the infected person deteriorated. They took over many responsibilities that would have been shared with a healthy partner. They had to give up their own careers and aspirations and often cared for years 24/7 without support. This has led to many now suffering chronic physical health issues after their loved one died and relying on disability benefits.
Please read cases of both infected and affected submitted to the Inquiry for many different examples of the impact of living and dying with HIV and hepatitis viruses.
In an email to the Infected Blood Inquiry, Grayson wrote, “I wish to say emphatically that hepatitis B, reinfection, and exposure to v CJD featured in our presentation to Sir Robert Francis regarding compensation ( but if you recall he did not report the content of our meeting in his initial statement.)”
There had previously been an issue however of Sir Robert Francis not recording some of the meetings with campaigners and the themes discussed which was highlighted in an earlier blog (see below)
In addition to our submission including hepatitis B, articles specifically on hepatitis B were sent to David Kirkham at the Cabinet Office, for the attention of Sir Robert Francis. Francis was also sent a legal judgement on hepatitis B related to EIBBS with an article I wrote for my own blog regarding the importance of assessing haemophiliacs separately from whole blood for hepatitis B due to their infection with multiple viruses and including the issue of reinfection, coinfection and the impact of how multiple viruses interact with each other, the cumulative effect as below,
Grayson and Longstaff received an email reply from Kirkham stating, “thank you for passing this on. I have forwarded to Sir Robert, along with a copy of the full JR judgement, for his information.”
Articles sent by the pair included one called, Is there a cure for hepatitis B? (Medical News) where Grayson highlighted, HBV is fatal for thousands of people every year because of resulting liver damage. However, most people recover from HBV infection within a few months. (but these are people without co infection and without repeated reinfection in the way haemophiliacs were reinfected with factor concentrates).
Another point Grayson highlighted was the following,
Acute HBV can develop into chronic HBV. A person’s risk of developing chronic HBV is relative to the age at which they first developed the infection.
Newborns and young children with HBV have a higher risk of developing a chronic infection. According to the Centers for Disease Control and Prevention (CDC)
Then an article was submitted on the case of a man jailed for infecting a partner with hepatitis B . Grayson was interested to know where that might leave those that gave haemophiliacs factor concentrates as a so called “miracle treatment” KNOWING that there was an almost 100% infection risk from the first shot of factor concentrates. (US plasma pools could be as high as 400,000 donors). Warnings given in the 1960s in the US by hepatitis experts such as Dr J Garrott Allen regarding the dangers of factor concentrates were ignored by authorities in the UK who turned a blind eye to outbreaks amongst haemophiliacs in the US once factor concentrates were introduced there prior to licensing in the UK in 1973.
Part of the evidence from Grayson and Wintle was related to the topping up of plasma pools for factor concentrates with “hepatitis rich” plasma sourced from gay men in San Francisco targeted for research into hepatitis B. However the surplus was then added to the plasma pools as highlighted in US depositions. Hepatitis B was an early indicator of AIDS prior to a test being developed.
Wintle who received US factor concentrates during the 1970s and 80s and was sat watching Sir Robert Francis continue his evidence to the Inquiry for a second day stated,
The impact of hepatitis B on my life as a female haemophiliac was utterly devastating. Not only did I have to battle with my local GP for care when it became clear I was ill but my ultimate diagnosis fell to the keen observation of a colleague, a senior surgical registrar at work, who realized that I was severely jaundiced and clearly ill with hepatitis. I ultimately lost my nursing career and was forced out of work for 2 years. In addition, my sister who is herself a haemophiliac was in recovery from then non A non B hepatitis (infected via the same haematologist) was forced to take on my care because I had no other family members who could take care of me. I had no professional support whatsoever throughout that time. The damaging effect on my liver was aggravated by the fact that I had already been exposed to infected US products from America 10 years previously which meant I was dealing with a co infected diagnosis… A DOUBLE WHAMMY!
So in conclusion it is difficult to understand how Sir Robert Francis could claim he received no representations regarding compensation for hepatitis B. If he didn’t receive representations then why not? If he did receive representation, then why is this not mentioned?… If his memory is so poor that he has forgotten that he was sent representation on hepatitis B, then it doesn’t bode well for the rest of his work on contaminated blood compensation proposals. What other omissions might there be that could have been overlooked?
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”.