Robert Syms, Sir George Young and David Chidgey, all local MP's, met up at College Green, Westminster to back the Haemophilia Society's "Carpet of Lilies" Campaign.
Around 5,000 people with haemophilia in the UK were infected with the Hepatitis C virus through the use of contaminated blood clotting concentrates given as part of their NHS treatment.
Every patient over the age of 16 years may have contracted HCV/HIV or both.
For people with haemophilia infected by HCV, medical experts estimate that:
· Up to 80% will develop chronic liver disease
· Up to 25% of those will have the risk of developing cirrhosis of the liver
· 1-5% has the risk of developing liver cancer
· To date, some 1000 people have lost their lives to either or both Hepatitis C and HIV viruses.
· Treatment with interferon/ribavirin offers the only a 30% chance of a cure for the HCV virus.
Many people with haemophilia may be unable to benefit from those treatments because of previous treatment failures or because of other medical complications.
· Figures from the United Kingdom Haemophilia Centre Doctor’s organisation show that up to 1999 over 120 people with haemophilia had died from liver cancer and liver disease. Over 800 people with haemophilia have died from HIV.
· A Haemophilia Society impact study submitted to the Department of Health showed that people with haemophilia infected by Hepatitis C had
· Difficulty obtaining life insurance
· Discrimination and ostracism at work, school and in society in general
· Inadequate support services for managing HCV
· Poor management and care after diagnosis
· There is no national strategy to deal with Hepatitis C so care and counselling services are extremely erratic.