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A History of Haemophilia and HIV
Other recent news articles Something for Weekend Radio 13/12/2006 Tainted Blood 16/10/2006 Conferences and Kaletra 15/9/2006 Department of Wealth... 14/8/2006 On Tipranavir - be careful it might kill you! 12/7/2006
History lesson and background to haemophilia and HIV in case you were not one of the ones living it at the time…
| Other recent news articles | |
| Something for Weekend Radio | 13/12/2006 |
| Tainted Blood | 16/10/2006 |
| Conferences and Kaletra | 15/9/2006 |
| Department of Wealth... | 14/8/2006 |
| On Tipranavir - be careful it might kill you! | 12/7/2006 |
Created: 5:12, 24/7/2005
The history of people with haemophilia and HIV is a succession of medical triumphs and disasters, and had never been told by the people who experienced it before. Haemophilia treatment over the past 40 years has been a roller coaster ride of an amazing medical success which then became the route of transmission for a series of terrible diseases. In 1960 when there was no treatment life expectancy for people severely affected by haemophilia was below 20 and meant a succession of painful bleeding episodes crippling of the joints which was ultimately fatal. With the invention and use of cryo-precipitate, a precipitation of human plasma, the first effective treatment became available. In the following decade this treatment was refined into a clotting factor concentrate made from multiple blood donations and treatment at home became available, encouraged and avoiding the need for weekly or daily hospital visits. This revolution in treatment permitted people with haemophilia to treat themselves for their bleeding episodes or be treated by their parents or spouses. People were taught to give intravenous injection of the factor concentrate themselves and so liberated them from continual reliance on hospitals. Prophylaxis was available through some advanced hospitals as an attempt to prevent the bleeding from starting and protect the joints from the resultant damage. For the first time people with haemophilia had the chance to go to mainstream schools and work.
In 1981 the first person with haemophilia died of pneumocystis carinii, a form of pneumonia peculiar to people with severely damaged immune systems. During the next ten years over 1200 people with haemophilia in Britain and many thousands around the world were diagnosed with HIV. Over 300 died in the UK in the first 10 years of the epidemic. During this decade people refused to send their children to schools attended by those with haemophilia, university departments would not register students with haemophilia, families were forced to leave their homes after attacks, some health care workers refused to treat people with HIV and the only treatments available were palliative. People with haemophilia who had had life expectancy dramatically extended by treatment now saw it massively shortened as a result of that treatment. In 1991 the prolonged legal battle against the UK government finally ended with an out of court for settlement of between £20,000 and £64,000 per person in one of the first acts by the new Prime Minister, John Major. In England and Wales the agreement was on condition that the recipients waived the right to future litigation against the government regarding any previous or future infections in blood products. That year a test for hepatitis C became available and those still alive were all informed over the next few years that they had been exposed to another potentially fatal disease. Before the widespread use of an effective treatment for HIV in the mid-nineties the death toll had passed 600, over half of all those infected. As haemophilia is a genetic disorder predominantly affecting males many of those infected helped care for their own brothers, uncles, and cousins when they died.
Between 1995 and 1999 the death rate plummeted as combination therapy for HIV proved successful for most people. A second great medical advance had dramatically impacted on the lives of people with haemophilia and left them to contemplate a future once again. Blood products are much safer now utilising viral inactivation techniques, however, parvovirus has been shown to evade some filtering procedures and last year many people with haemophilia were informed that treatment they had received had been made with blood donated from someone who later died of vCJD. By the year 2000 more than 800 had died including over 100 from liver disease. The 400 still living have not only lived through dramatic history but are still faced with the challenge of managing their haemophilia, two chronic infections and the complexities of multiple treatment regimes.