All around the world, including in New Zealand, many people with haemophilia have been infected with HIV (Human Immunodeficiency Virus) and the hepatitis C virus (HCV) from the contaminated plasma, cryoprecipitate, and factor concentrates used to treat bleeds.
Donors who had HIV or HCV unknowingly contaminated the blood supply. Most of the contamination occurred before the cause of AIDS (Auto-Immune Deficiency Syndrome) or a test to identify HIV was discovered in the early 1980s or HCV in the 1990s.
In New Zealand, current blood-donor screening and the use of recombinant factor products have virtually eliminated the risk of transmission of viruses through blood products. Today, clotting factors made from human plasma are treated to inactivate many viruses and every donor is checked for HIV and HCV infection before his/her blood is used.
Although this tragedy forced very rapid changes in the way blood products were manufactured, most people worldwide who used blood products regularly before 1988 were infected with a blood-borne virus. The leading causes of death in people with haemophilia during the last two decades are infections with HIV and HCV.*
Many people continue to live with the effects of HCV and its destruction of the liver. While traditional treatment for HCV is intensive and often debilitating treatment, new treatment products currently in development offer real hope of a quicker, easier and more reliable cure. Medication does exist to try and prevent HIV from developing into AIDS, however, it is also not guaranteed and no cure has yet been developed for this fatal condition where the body loses all ability to fight off infection or disease.
Support for people with bleeding disorders and Hepatitis C
HFNZ devotes special care to supporting people who were infected with hepatitis C through 'Bad Blood'. More information will be developed on this site, but for an interesting look at the history of 'Bad Blood' and the role of people with haemophilia in New Zealand advocating for themselves, HFNZ Life Member Mike Carnahan has published Allies or Enemies, available free as a PDF or for download for iPhone, iPad, or Android.
Annual HFNZ Hepatitis C Survey
Every year HFNZ surveys their members with chronic hepatitis C to actively seek feedback about their health and experiences. It is an important tool to listen to the concerns of these members, identify areas we need to work on and make improvements. A summary of survey results from the last five years was published in the December 2014 issue of Bloodline.
Other Support for People with Hepatitis C
For more information on hepatitis C and initiatives to help improve health outcomes for people in New Zealand living with hepatitis C visit the website of the Hepatitis Foundation of New Zealand
*World Federation of Hemophilia 2012