Haemophilia is a genetic condition which impairs the blood clotting process in the body. In the 1980s and 1990s many people with haemophilia were accidentally infected with HIV through blood transfusions.
Put simply, people with haemophilia bleed for longer if they cut themselves. It’s an inherited (genetic) condition which mainly affects men, although women can be carriers (meaning they can pass it on to their sons) and can have a mild form of the condition.
Haemophilia stops the blood clotting process in the body from working properly. Usually, when someone cuts themselves, clotting factors in their blood combine with platelets to make the blood sticky, which stops the bleeding.
Depending on how much clotting factor the person is missing, their haemophilia could range from mild to severe.
During the late 1970s and early 1980s, haemophilia treatments were made from pooled donated blood. Some of this blood came from people who had HIV or other bloodborne viruses, such as hepatitis C, so thousands of people with haemophilia (or who needed transfusions for other reasons) were accidentally infected. This is often referred to as the blood scandal.
Blood is now screened and factors heat treated. According to The Haemophilia Society:
‘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 bloodborne viruses. Over 2,400 people have since died and of the 1,200 people infected with HIV less than 250 are still alive.’
Many haemophiliacs did not know that they had been infected until years later – this led to many partners and children also becoming infected. A long battle began with the UK government in a bid to secure compensation.
The All-Party Parliamentary Group on Haemophilia and Contaminated Blood (APPG) reported on this group of people and their struggle to get help and compensation in January 2015.
The effects on the body can be anything from quite mild to very severe:
Managing haemophilia, HIV and potentially also hepatitis C is a real challenge to an individual, their medical professionals and the people who care for them.
Someone with all three conditions may have complex needs, both in terms of treatment and support. It’s important that the medical professionals monitoring and treating a patient work closely together, so they’re aware of all the issues involved – such as drug interactions or adherence issues.
There have been some studies to investigate anecdotal evidence of bleeding episodes being increased by HIV drugs in the protease inhibitor class. It’s not clear why this is the case but it’s important that doctors treating haemophiliacs with HIV are aware of it.
If you’re living with both conditions, you may feel a range of emotions, many people in the APPG report describe feeling angry, let down and that their family life has suffered. The Government has recently announced that a full statutory inquiry into the blood contamination that affected so many people will take place within the Cabinet Office.
There is support available although the way it’s managed has recently changed.
Recently the way people with haemophilia, who have been infected with hepatitis C and/or HIV, receive the financial help they are entitled to has changed. Previously it was managed by five charities and it will now be run by the NHS Business Services Authority (BSA). You can find out more from The Haemophilia Society.
Nationally, The Haemophilia Society also offers advice, support, information and services to people with haemophilia, including those affected by HIV.
The Birchgrove Group is a support network of men and women affected by haemophilia and HIV.
Tainted Blood is a campaign for compensation and a public inquiry into the events which led to British haemophiliacs becoming infected with HIV and Hepatitis C in the late 1970s and early 1980s.
Support and advice is also available from THT Direct.
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This article was last reviewed on
by Anna Peters
Date due for the next review: 28/11/2020
Content Author: Kerri Virani
Current Owner: THT Direct
Haemophilia – overviewNHS ChoicesApril 2017
Haemophilia – causesNHS ChoicesApril 2017
Haemophilia – symptomsNHS ChoicesApril 2017
Haemophilia – treatmentNHS ChoicesApril 2017
The history of contaminated bloodThe Haemophilia Society
Understanding HaemophiliaThe Haemophilia SocietyFebruary 2017
HaemophiliaNursing TimesFebruary 2009
Joint damageCanadian Hemophilia Society2017
Inquiry into the current support for those affected by the contaminated blood scandal in the UKThe All-Party Parliamentary Group (APPG) on Haemophilia and Contaminated BloodDiana Johnson MP and Jason McCartney MPJanuary 2015
Increased bleeding in HIV-positive Haemophiliacs treated with antiretroviral protease inhibitorsStanworth, Bolton, Hay and Shiach (1998)Haemophilia, 4: 109–114. doi:10.1046/j.1365-2516.1998.00154.x
Increased bleeding associated with protease inhibitor therapy in HIV-positive patients with bleeding disordersWilde, J. T., Lee, C. A., Collins, P., Giangrande, P. L. F., Winter, M. and Shiach, C. R. (1999) British Journal of Haematology, 107: 556–559. doi:10.1046/j.1365-2141.1999.01748.x
Government announces inquiry into contaminated blood scandalJefferson CourtneyHaemophilia UKJuly 2017
THE HAEMOPHILIA SOCIETY DEMANDS INQUIRY INTO CONTAMINATED BLOOD PRODUCTSThe Haemophilia SocietyMay 2017
UPDATE ON THE CONTAMINATED BLOOD SUPPORT SCHEMESThe Haemophilia SocietyOctober 2017
Contaminated blood scandal to have 'full statutory inquiry'BBC News (report)November 2017
Various people talk about their experiences of living with HIV.
CAB - Citizens Advice Bureau
HIV Drug Interactions
George House Trust
Equality and Human Rights Commission
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