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Haemophilia and HIV

haemophilia and HIV

Haemophilia is a genetic condition which impairs the blood clotting process in the body. Blood contains proteins called 'factors' and these are essential to the clotting process.

What is haemophilia?

Haemophilia occurs when there has been a genetic change which has affected one of these factors.

Haemophilia only affects men, but women can be carriers of the gene and pass it on to their sons. (There are other similar bleeding disorders which affect women, including Von Willebrands). Although haemophilia is often a hereditary condition, in some cases it occurs when there is no history of it in the family.

The effects on the body can be anything from quite mild to very severe. A cut or graze will not usually cause a problem but if a bleed happens as the result of an injury to a joint, for example, bleeding internally into the joint can be more serious. Untreated it can cause pain, swelling or muscle spasms in the surrounding area.

If there are frequent bleeds, a person with haemophilia may experience severe pain and mobility problems. As they get older, arthritis is common.

Synthetic treatments are now available but during the late 1970s and early 1980s treatments were made from pooled donated blood. Some of this blood came from people who had HIV or other blood borne viruses, such as Hepatitis.

Blood is now screened and factors heat treated but before these processes were put in place more than 4,800 haemophiliacs in Britain were infected with Hepatitis C and 1,200 were infected with HIV as well.


How are haemophilia and HIV connected?

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 blood borne viruses, such as hepatitis.

Blood is now screened and factors heat treated but before these processes were put in place more than 4,800 haemophiliacs in Britain were infected with hepatitis C and 1,200 were infected with HIV as well. Of those 1200, only around 400 people 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.

You can read more about it here.


Managing haemophilia and HIV

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 is important that the medical professionals monitoring and treating a patient work closely together, so they are 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 is not clear why this is the case but it is important that doctors treating haemophiliacs with HIV are aware of it.

At present there are around 6,000 haemophiliacs in the UK, and diagnosis is based on family history and blood tests. It can be treated by injection of factor concentrates which help the blood to clot. These can either be given regularly to prevent bleeds (prophylaxis) or only when bleeding occurs.

Quite recently, synthetic clotting factors (known as ‘recombinant’ clotting factors) have been made available to haemophiliacs. Previously clotting factors were made from pooled donated blood – it could take up to 30,000 donations of blood to make one batch of factor concentrate.


Support for people with haemophilia and HIV:

Nationally, the Haemophilia Society offers advice, support, information and services to people with haemophilia, including those affected by HIV.

The Macfarlane Trust exists to give help to people with haemophilia who have been infected with HIV, and to their families and dependants. Its brief includes the assistance of its members both financially and socially. It administers the 'recompense' payments and the hardship fund set up by the government.

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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The Information Standard: Certified member

This article was last reviewed on 22/9/2014 by A.Latty

Date due for the next review: 30/9/2017

Content Author: Greta Hughson (NAM)

Current Owner: THT Direct

More information:

Haemophilia, The Haemophilia Society

The Haemophilia Society: HIV:

NHS Choices: Haemophilia:

Inquiry to hear from HIV victims, BBC News website (2010)

Minister rules out higher pay-out for blood victims, BBC News website (2010) 

Tainted blood victims left angry, BBC News website (2010)