Haemophilia Society President presents Hepatitis C (HCV) Facts to UK Government

Mar 27 2004

Haemophilia Society President to challenge government for second time in Lords question on proposed Hepatitis C ex gratia payment scheme On Thursday 25 March, the first business in the House of Lords will be further questioning of Ministers by the Haemophilia Society’s President, Lord Morris of Manchester.

He will question them for the second time in a month on the government’s recent decision to exclude widows from the proposed payments scheme for those infected with hepatitis C by contaminated NHS blood products used to treat their haemophilia. Lord Morris of Manchester said in advance of Thursday’s mini-debate, ‘How can anyone possibly justify excluding widows from help? Surely theirs is the cruellest loss having seen their husband and father die a slow, agonisingly painful death from cirrhosis or liver cancer due entirely to their NHS treatment?’

The Haemophilia Society’s CEO, Karin Pappenheim, added ’The government’s decision to exclude families who have been bereaved as a result of hepatitis lacks compassion and is a bitter blow to those who, surely, have suffered the greatest harm from this tragic treatment disaster.’

Notes to Editors Lord Morris’s PQ is scheduled for 11 am on Thursday 25 March: ‘To ask Her Majesty’s Government whether they will now reconsider their decision to exclude the widows of patients infected by hepatitis C by contaminated NHS blood and blood products from help under the ex gratia payment scheme.’ For more information please contact Susan O’Sullivan at the Haemophilia Society on 020 7391 9132. Lord Morris of Manchester is available for interview by calling 020 7219 6795. The Haemophilia Society

Hepatitis C (HCV) Fast Facts

• Around 5,000 people with haemophilia in the UK were infected with the Hepatitis C virus through contaminated blood clotting concentrates given as part of their NHS treatment in the 1970s and 80s before 1985 (1987 in Scotland) when viral inactivation processes were first introduced.
• Most patients over the age of 18 years are likely to have contracted hepatitis C and one in four of those with hepatitis also was infected with HIV.
• For people with haemophilia infected by HCV, medical experts estimate that:
  - 15% clear the virus naturally
  - Up to 85% will develop chronic liver disease
  - Up to 25% of those will have the risk of developing cirrhosis of the liver
  - 1-5% of those with cirrhosis have an annual risk of developing liver cancer
• Latest expert estimates are 2,800 people with haemophilia were living with hepatitis (HCV) as at 1st January 2000 and they fall into the following five stages of disease progression:
  - 424 have cleared the virus (but would still show positive in HCV antibody test)
  - 361 still have virus but have not yet developed more serious liver disease
  - 1563 have liver damage such that the liver already shows signs of fibrous change. This means they have either already started to meet or meet the criteria for starting interferon/ribavirin combination therapy for HCV; at this stage the hepatitis infection is very debilitating with much stress/psychological trauma
  - 361 have clinical proof of liver cirrhosis, ie very serious injury/harm to the liver
  - 120 have developed decompensation of liver or liver cancer or may already have had had to have liver transplants; symptoms at this stage include jaundice, encephalopathy (impaired mental function); oedema (accumulation of fluid) and oesophageal varices (like varicose veins in the gullet).
• Figures from the United Kingdom Haemophilia Centre Doctor’s organisation show that up to 1st January 2002 over 232 people with haemophilia had died from liver cancer and liver disease. Over 800 people with haemophilia have died from HIV.
• As people with haemophilia were infected with hepatitis 20-40 years ago, the large majority have reached the more advanced stages of the disease as outlined above.
• Treatment with pegylated interferon/ribavirin offers the only a 40% chance of a cure for the HCV virus. It is unpleasant, lengthy (6 – 12 months), has serious side effects (1 in 7 have to stop the treatment due to these) and many have to stop work because of treatment side effects. Many people with haemophilia may be unable to benefit from those treatments because of previous treatment failures or because of other medical complications. Failing that the only treatment is a liver transplant, however, the new liver will later be re-infected with HCV.
• A survey of people with haemophilia in July 2001 found
  - 73% said HCV had adversely affected family/social life
  - 50% had to cut down/give up work due to HCV
  - 40% had problems obtaining life assurance
  - 29% said HCV had impacted on their earnings
  - 17% had problems obtaining travel insurance
  - 14% had problems obtaining mortgages
  - 11% had problems obtaining pensions
• HIV infection affects 500 people with haemophilia and HCV; progression of HCV is accelerated by HIV and liver failure is now the leading cause of death in this group.