Liz Carroll, Chief Executive of the Haemophilia Society has written to the Prime Minister setting out the ‘clear conflict of interest’ in the Department of Health (DH) being involved in drafting the terms of reference for the inquiry into contaminated blood and blood products.
The letter sets out three issues that are required to be urgently addressed.
- The Department of Health cannot be the sponsoring body for the inquiry
- The inquiry must be a statutory inquiry under the 2005 Inquiries Act
- The Government should not move forward on the establishment of the inquiry until the terms of reference have been consulted on in an effective way
Unless these issues are addressed the inquiry is unlikely to be able to proceed in an effective and efficient manner and will not uncover the truth to achieve the justice and closure our members need.
The Haemophilia Society are anxious that the terms of reference for the inquiry are finalised as a matter of priority. We will participate in any consultation process in a constructive, effective and fair manner subject to the DH not being the facilitator of those discussions. The Haemophilia Society are ready to present proposed terms of reference that draw on those from similar inquiries in other jurisdictions.
The Haemophilia Society have also written to the Permanent Secretary at the Department of Health as a matter of courtesy informing them of the letter to the Prime Minister and stating that The Haemophilia Society and its members believe that the Department is ‘clearly conflicted in its role in drafting the terms of reference’ for the inquiry.
The Department of Health has been running an informal consultation into the nature and remit of the inquiry since August which closes on the 18th October. As yet, The Haemophilia Society has not been in a position to engage with the DH as the proposed sponsoring body for the inquiry.
About the Contaminated Blood Scandal
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. Thousands of people were infected with deadly viruses during this time. Due to a lack of timely information many partners were also infected.
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.