The Haemophilia Society welcomes the Government’s announcement of a public inquiry into the contaminated blood scandal.
Our members and campaigners will be pleased and relieved that after decades of campaigning there will finally be an inquiry into how over 5,000 people with bleeding disorders were infected by contaminated blood products. Now, they will finally be able to get to the truth and justice they deserve.
Liz Carroll, Chief Executive of The Haemophilia Society, said, “For decades people with bleeding disorders and their families have sought the truth. Instead, they were told by the Government that no mistakes were made while it repeatedly refused to acknowledge evidence of negligence and a subsequent cover up. Finally, they will have the chance to see justice.”
The Government must now move quickly to involve the affected community in agreeing the remit and powers of the inquiry.
To be successful the inquiry must have the following powers and remit:
- Involve the affected community in deciding the remit and ensure their voices are heard in the taking of evidence
- The remit would have to cover the early knowledge of transmission of hepatitis through blood transfusions, the seeking of self-sufficiency in blood products from 1973 and the development and licensing of pooled blood products in the 70s and 80s.
- What knowledge Government, clinicians and pharmaceutical companies had at what time of the risks of blood transfusions and blood products
- It would then further need to consider the subsequent treatment of people affected, including diagnosis, testing, support and the circumstances by which partners and other family members became infected. When information was shared with patients and how this was decided.
- Finally, it should look at allegations of a cover-up and suppression of views continuing until the present day.
- The inquiry must consider evidence of negligence and criminal acts and if found refer them to the police
- It would need powers to compel witnesses to give evidence under oath.
- Seek evidence from pharmaceutical companies and others outside the UK involved in the manufacture, marketing and licensing of pooled blood products
- It would need to be able to insist in the disclosure of all documents help by Government and government bodies including health authorities. This must include those documents currently withheld due to commercial sensitivity.
- Campaigners and affected individuals would need to be involved in the evidence gathering process and would need reassurances that all documents would be copied and none destroyed.
The inquiry will need to make recommendations of what changes are required to NHS policies and procedures, how to improve Government decision making ensuring blood and blood product safety and in relation to the levels of financial compensation.
An overview and history of contaminated blood products
In the 1970s and 1980s around 5,000 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 2,400 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 and blood products were known to transfer viruses such as Hepatitis and these 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 1986 UK patients were receiving safer treatment, although some risks remained. Only in the late 1990s 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.
For more information please contact Jeff Courtney on Jeff@haemophilia.org.uk or call our office on 0207 939 0780.