The Haemophilia Society’s campaign for a public inquiry into the scandal of contaminated blood products got a boost today as legal action was launched in the High Court. Papers were lodged for a group legal action on grounds of negligence/breach of duty against the Government.
Welcoming the development, Liz Carroll said: “This scandal continues to devastate a generation of people with bleeding disorders and we hope that despite years of delays the Government will act quickly to provide truth and justice for these families.”
She continued, “Notwithstanding the need for a public inquiry, many of our members continue to live with viruses including HIV and hepatitis which have had a severe long-term health impact. They desperately need better support from government.
Campaigner Jason Evans and other families affected by the scandal are suing the Government over failures to prevent or reduce the risk of infection with blood-borne viruses of people with bleeding disorders treated with contaminated blood products.
The Haemophilia Society has been campaigning for a public inquiry and is backed by MPs from across the House of Commons. Last month campaigners took part in a peaceful protest outside the Department of Health and a delegation delivered a petition to the Prime Minister insisting that this issue be investigated. There has as yet been no substantive response from the Government.
For more detail on The Haemophilia Society’s position on the contaminated blood scandal a statement from our board of trustees is available here or contact The Haemophilia Society on 0207 728 0780 or Jeff@haemophilia.org.uk.
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 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.
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.