Staff from the Hepatitis C Trust have attended many of the witness hearings since the Infected Blood Inquiry started and have watched many more online.
No one could listen to any of the witness’s testimonies and remain unmoved or objective.
So many different people, all of them reporting a catalogue of mismanagement, clinical errors, medical negligence, ignorance and erroneous reporting.
Aside from the devastation that being infected with hepatitis C and/or HIV had caused, they experienced the worst kinds of discrimination and stigma and received no empathy or support of any kind. They described social and family isolation, losing jobs and financial ruin and all were restricted from having any kind of normal life.
Some witnesses were understandably overwhelmed with anger, grief and desire for those responsible to be held accountable and paradoxically, these emotions added to an already long and difficult path to the healing and resolution they are long overdue for.
Many have felt frustrated over these last months and were concerned that things were slowing down. So it was heartening to see the re-launch of the Inquiry hearings after they had had to be postponed earlier this year as a result of the Covid-19 pandemic, even though that did not slow down or impede the Inquiry Team’s progress at all
Indeed, in his opening statement on the 22nd, Sir Brian reported that his teams “collective resilience has been and will yet be vital in ensuring that this Inquiry is able to reaffirm its principle of being as quick as reasonable thoroughness permits”.
It was however a very different experience for those attending this time, as a result of the robust social distancing precautions in place to protect both those attending, many of whom will be particularly vulnerable, and also the Inquiry team, to ensure that they are able to continue this work at pace, uninterrupted by illness orself-isolation.
As a result of Covid-19, the number of those attending had to be greatly reduced and the atmosphere is somewhat heightened by this and it felt more stark, sombre andmore low key as a result.
The Inquiry’s attention for the next few months will be specifically focused on the haemophiliac community who were infected with HIV/hepatitis C with imported blood products and they will be questioning the clinicians and decision makers who continued to use it, despite the many warnings. .
These warnings were clearly outlined by Jenni Richards QC, Counsel to the Inquiry, at the hearing we attended on 23rd September, explaining the history of when hepatitis and HIV first started to be identified, to set the context of what was known and when.
Going back as far as 1885 when it was first noted that 19 patients became jaundiced after receiving “humanised lymph”, to the first clear reports in the early 1940’s about US troops who were vaccinated for yellow fever via “human serum into tissue”, there were early suggestions of hepatitis viruses.
In 1942, recommendations started to be formalised at a senior level as “delayed jaundice” from blood transfusions started to appear and there were suggestions then that all the batch numbers of blood donations should be properly recorded, as should all cases of jaundice.The Lancet noted that frequently hepatitis and jaundice occurred following transfusions and it became clear there was a higher risk from pooled dried serum. It was also clear that although some patients were very ill, many were, initially at least “ambulant and uncomplaining”.
The Ministry of Health stated that there “must be a plan” back in 1944 and the Chief Medical Officer advised “I am concerned for the future of blood products on civilians”. They were seeing high rates of fatalities and it was acknowledged that many transfusions carried out were actually often unnecessary, but this was also tempered with their concerns about dissuading the public against transfusions overall.
The terminology kept changing and by 1946 there was talk of “homologous serum jaundice” and “syringe jaundice”.
There was a clear increased risk with pooled products (where many blood donations are all put together) and a study of 649 patients showed a 4.5% infection rate.
In 1950 in Cardiff a study of “large pool plasma” showed a 10% risk and “small pool plasma” a 1% risk and also at this time the World Health Organisation carried out their first “expert report into hepatitis”.
By the mid 1960’s, the “Australian antigen” was identified as hepatitis B.
“Post transfusion hepatitis” was first recorded in 1966 and the risk of blood donations from “prisoners and skid row” were shown to be 10 times more likely to be infected and it was suggested that all blood donations from these groups should be clearly marked as “high risk”, so that doctors could weigh up the necessity of giving it or not depending on the situation. Dr Zuckerman said “There should be a follow up to all blood transfusion recipients” and by the early 70s it was shown that 1 in 33 were infected with ‘hepatitis’ following a transfusion and 90% of post transfusion hepatitis was found to come from commercial or prison blood.
Hepatitis A was clearly identified in 1973 and then in 1974 the Lancet had an article on “long incubation post transfusion hepatitis without serological evidence of exposure to hepatitis B” and 36% of 51 cases showed some sort of infection, and for what appears to be the first time, is named as “hepatitis C”.
In the Times in 1974 under the banner “The Science Report: New Strain of Hepatitis Isolated” it reported that “two strains of virus have been known for a long time: hepatitis A (originally called infectious or short-incubation hepatitis), and hepatitis B (sometimes called post-transfusion hepatitis, because it is spread through donated serum and other blood products, and injections with contaminated needles). The existence of at least one other strain has been apparent during the past six or seven years because research has shown that a large number of patients, particularly those infected from transfusion or injection, were not carrying the hepatitis A or B strains. In the United States up to 50 per cent of transfusion-associated illness is caused by this third ‘non-A non-B’ agent.”
It was clear that prisoners and drug users who donated were likely to have hepatitis B and so in 1975 the Chief Medical Officer recommended that we stop collecting blood from these sources.
An old World in Action documentary (Blood Money) was shown that around this time showed the rise in the haemophiliac community getting ill after receiving blood products. They went to the US to investigate where the blood was coming from and found clinics with queues of “drug users and vagabonds”, who were only given the most rudimentary “screening” before donating. It was of course an easy and regular income for them to access, and they were able to attend the clinic twice a week.
By 1976 there was a high proportion of haemophiliacs with “hepatitis” – and by the late 1970s, 23% were found to have cirrhosis by 1980 the serious and potentially life threatening nature of a Non-A Non-B/hepatitis C infection was apparent. .
It was just at this time that reports of HIV were emerging and the first recorded case in the UK was at the end of 1981, although there had been a general awareness of it from 1979
The Inquiry also reported on a memo from within the Department of Health and Social Security and from September in which advised “…that 90% of all post-transfusion and blood product infusion hepatitis in the USA and elsewhere is caused by non-A, non-B hepatitis viruses which, unlike hepatitis B, cannot at present be detected by testing donor blood. This form of hepatitis can be rapidly fatal, particularly when acquired by patients with pre-existing liver disease or can lead to progressive liver damage. It can also result in a chronic carrier state thus increasing the pool of these viruses in the community”
In 1986 Non-A Non-B was again raised in a report in the Lancet who said it was clear that blood products had been recognised as a risk for that, since 1976.
A few years later in 1989, hepatitis C was finally isolated in the laboratory and named as such and then work on reliable tests for screening began, but as we know, it was not until September 1991 that the national blood supply was formally screened for hepatitis C.
If you would like to view this hearing for more detail you can do so here
We continue to encourage everyone who had a blood transfusion before September 1991 to get tested for hepatitis C.
It is not a test that is routinely done, many people are often asymptomatic, so not aware they are ill, or symptoms they may be experiencing are often put down to other causes.
There is only one way to know if you have hepatitis C and that is to get tested.
For anyone who needs information or support about this or anything relating to hepatitis C, please do call our helpline – 020 7089 6221 or email us firstname.lastname@example.org