The Haemophilia Society, alongside campaigners, has written to the Prime Minister calling for a public inquiry into Government and NHS negligence during the Contaminated Blood Scandal in the 1970s and 1980s which led to the deaths of over 2,000 people and thousands more infected with HIV and Hepatitis B & C and other blood-borne viruses, after being treated with contaminated blood products.
The letter, addressed to Theresa May, describes the anger felt by many at the failure of the Government to address the tragedy, highlighting the government’s ongoing assertion that no mistakes were made at the time.
The Haemophilia Society is demanding that the Government open a ‘full UK wide public inquiry’, which has never previously occurred and which will compel witnesses under oath, release all documents for public scrutiny and have a remit to consider failures in government policy and negligence by public bodies.
Further to this, there is a call for compensation to be made available for people affected by the scandal, which has been dubbed as ‘the worst treatment disaster in the history of the NHS’.
Liz Carroll, Chief Executive of the Haemophilia Society, said, “This issue still devastates our community. A generation of people with haemophilia and other bleeding disorders were infected with blood-borne viruses and many lost their lives. The extent of the scandal was avoidable if action had been taken over known risks and the government had pursued their policy of self-sufficiency. Those infected and their families deserve truth, justice and compensation”.
The letter received over 500 signatures from the families and friends of those affected as well as 8 different campaign groups representing this community.
The Haemophilia Society is asking supporters to tweet supporting the call to reveal the #bleedingtruth.
The announcement comes following BBC Panorama, ‘Contaminated Blood: The Search for the Truth’ aired on BBC One.
About the Contaminated Blood Scandal
In the 1970s and 1980s over 4,500 people with haemophilia and other bleeding disorders were multiply-infected with HIV, Hepatitis B and C and a range of other blood-borne viruses. Over 2,000 people have since died and of the 1,200 people infected with HIV less than 250 are still alive.
People with bleeding disorders lack a protein, most commonly factor 8, factor 9 or von Willebrand factor, that enables their blood to clot. This mean that even minor injuries can lead to difficult to treat bleeds, particularly into joints which, over time, leads to joint damage. Treatment requires regular replacement of the missing protein by intravenous injection.
In the 1970s treatment of haemophilia and other bleeding disorders with fresh-frozen plasma and cryoprecipitate that contained the missing proteins was replaced with a new product, factor concentrate. Factor concentrates, such as factor 8 for treatment of haemophilia A, were a revolutionary new treatment allowing patients for the first time to be treatment prophylactically, that is prior to a bleed, to reduce the likelihood of bleed and the resulting joint damage.
These new treatments, however, were produced using a process which involved pooling human blood plasma from up to 40,000 donors and concentrating it to extract the required factor. Blood products were known to transfer viruses such as Hepatitis and this risks was vastly increased when they were pooled using the new techniques. This risk was further exacerbated when supplies of UK produced factor concentrates were not sufficient to cope with NHS demand, and products were increasingly imported from the United States. In the US, high-risk paid donors were used as well as being collected in prisons increasing the risk of contamination with blood-borne viruses.
These risks were ignored by leading clinicians and Government who then failed to take appropriate action to end their use and return to safer products. Pharmaceutical companies and leading clinicians did not appropriately share, or even hid, information about risks from patients and patient groups. Many people were infected with deadly viruses during this time.
By 1984, heat-treated product that could inactivate viruses had started to become available, this combined with improvements in donor vetting meant that by the end of 1985 all UK patients were receiving safer treatment although some risks remained. Only in the late 90s did use of synthetic (known as recombinant) clotting factors start to become widespread in the UK effectively eliminating the risks from viruses and other contaminants.
During this time, patients were tested for viruses without permission and not told their results until years later. Some, as a result, were denied appropriate treatment and in some cases infected their partners and other family members.