Your 20s
& Beyond
HIV and hepatitis C
Prior to 1986, much of the clotting factor made from donated human blood had been unknowingly contaminated by blood borne viruses and, in 1981, pneumocystis carinii (a type of pneumonia) claimed the life of someone with haemophilia for the first time. This form of pneumonia occurs only in people with severely damaged immune systems and, over the next 10 years, more than 1200 people with haemophilia in the UK - and many thousands around the world - were infected and diagnosed with HIV.
After having their life expectancy significantly increased by the new factor treatments, people with haemophilia now saw it drastically reduced.
More bad news was to come. In 1991, a test for a condition called Hepatitis C (Hep C) became newly available. This meant that many of those who had so far survived HIV infection were told that they may have also been exposed to another potentially fatal condition.
By the year 2000 more than 800 people with haemophilia in the UK had died from HIV, Hep C or a combination of the two (please see the Macfarlane trust website (click here for more information)). However, combination therapies for HIV and Hep C have since been introduced and death rates have fallen dramatically across the board.
Techniques for removing viruses from blood products were developed and, following the HIV and Hep C tragedy, these products were widely prescribed to people with haemophilia. This meant that heat treated blood based treatments were introduced in 1985 and, since 1986, no-one with haemophilia has been infected with HIV or Hep C from blood products. However, the techniques used to ‘clean’ blood have limitations as new viruses, bacteria and other transmissible agents emerge.
These known limitations led to a determined drive towards developments in treatment that would once again revolutionise the outlook for patients. In the early 1990s, the first factors made by genetic engineering were developed. These generation one recombinant products, and subsequently the generation two products (late 1990s), dramatically lowered the need for blood components to be used in the manufacturing process (click here for more information) though they do still contain blood components.
In 1997 the UK Haemophilia Centre Doctors’ Organisation (UKHCDO) recommended recombinant factor concentrates as the treatment of choice for people with haemophilia. This did not mean that patients immediately began to receive these treatments and it was only in 1998, following pressure from the Haemophilia Society and haemophilia clinicians, that the government began to fund recombinant products for all children under 16 years old.
