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 1,243 people known to be infected with HIV less than 250 are still alive.
History of Treatment of Bleeding disorders
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.
Traditionally, bleeds due to haemophilia or other bleeding disorders were treated with bed rest, cold compresses and whole blood transfusions.
Over time treatment improved and 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 treated prophylactically, to reduce the likelihood of bleeds and the resulting joint damage.
These new treatments, however, were produced using a process which involved pooling human blood plasma from up to 100,000 donors and concentrating it to extract the required factor. Blood products were known to transfer viruses such as Hepatitis and this risk 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 using blood 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 March 1983, heat-treated factor concentrates were available that could inactivate the HIV virus. Also, improvements in donor testing and selection of blood products meant safer treatment options were available.
The selection of blood products utilising plasma derived from high risk donors by the provision of United States sourced blood products is a matter of serious public concern that is required to be investigated as part of the Inquiry process.
In the United Kingdom the ability to achieve self-sufficiency existed but was not achieved. This led to increased use of more dangerous imported blood products.
Eventually, products were heat-treated to destroy dangerous viruses but 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.
Patient Information and the Government/NHS response
The failure to afford patients sufficient information to be in a position to determine the risk profile of alternate blood product treatments by way of informed consent is a matter of considerable angst and anxiety throughout the affected community.
At the time, the NHS didn’t clearly communicate the known risks to patients. Nor did it change practices to avoid using blood products for patients only needing occasional treatment who could have been treated with safer alternatives.
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.
The response of Government to the risk profile of blood products against the evolving state of risk is a matter that requires careful consideration. In addition the failure to respond by Government in an appropriate, humane and comprehensive manner to the tragic infections that occurred within our community is a matter that has heaped insult upon injury.
It has taken in excess of thirty years to achieve this Inquiry and the failure for such an Inquiry process to have been instituted in a timelier manner is, in itself, now an issue for consideration.
Contaminated blood has had – and continues to have – a devastating impact on the lives of thousands of people with haemophilia and on their families. Those infected live with the health effects of viruses, with more deaths each year. Many people’s lives have been severely affected, through, loss of careers and subsequent reduction in household incomes, and long-term impacts on relationships and mental health.
Successive UK governments have refused to hold a public inquiry into these events. An independent inquiry under Lord Archer, greatly supported by The Haemophilia Society in gathering and presenting evidence, reported in 2009. It made strong recommendations to government, some of which have been implemented. In 2008 the Scottish Government set up a public inquiry under Lord Penrose.
The government provided partial support to some individuals and families through various charitable trusts funded by the Department of Health. For example, the Macfarlane Trust gives a regular payment to those with HIV while the Skipton Fund gives some support to those diagnosed with hepatitis C who have needed treatment. Since 2017 these trusts have been combined in single support schemes in England, Scotland, Northern Ireland and Wales.
Living with the legacy of treatment
On the following pages you can read how NHS contaminated blood treatment affected our community, you will find information about current support available, our work in this area and stories from members living with the legacy of treatment from the 1970s and 1980s, a period when a large proportion of blood products supplied to patients by the NHS was contaminated with HIV or hepatitis C, as well as information on treatment developments for people Hepatitis C and HIV. We are developing this information so this page will be updated as we gather information.
Contaminated blood had – and continues to have – a devastating impact on the lives of thousands of people with haemophilia, and on their families. Many have died, and those infected live with the long-term health effects of the viruses and their treatments.
When reading these stories, do remember how much care and treatment has changed in recent years. To find out more about any of the issues raised here contact us.
If you’d be happy to tell your story (we’ll keep your identity confidential if you wish), please contact us.