Contaminated Blood Background Documents The worst treatment disaster in the history of the NHS

Support Documents Haemophilia Society, Manor House Group, Taintedblood – Who are we ? History Government knowledge of risks HIV / HCV Infection rates Archer Report / Contaminated Blood Bill Compensation schemes to date Legal Actions Politician Quotes Personal Stories Pre-election pledges Personal stories

Who are we ? The Haemophilia Society - is the only national and independent organisation for all people affected by bleeding disorders. The Society is led by affected people and works in close partnership with the NHS. We provide information and support for people affected by bleeding disorder and represent their interests. Manor House Group – Fighting for Haemophiliacs Infected with Hepatitis C. Formed on 10 th July 1993, the group was formed to bring awareness to liver disease in haemophiliacs. Manor House Group is a registered charity and have a large following across the country. taintedblood exists solely to support and to achieve justice for those infected and affected by contaminated blood and blood products in the United Kingdom and to ensure that all steps are taken to avoid any repetition of this disaster. The taintedblood committee consists of people who all are either directly affected by contaminated blood or are bereaved from someone affected. They all act in a purely voluntary capacity and are dedicated to achieving the aims of the group.

History Late 1970s and early 1980s 4,670 British haemophiliacs infected with HIV and or Hepatitis C ( HCV) – 1,243 HIV – 4,670 HCV Contaminated blood sourced from UK and abroad NHS treatment No statutory public inquiry No meaningful debate in House of Commons To date 1,974 people have died as a result of their infections. Fathers, sons, husbands, brothers. Those infected continue to die at rate of around 1 per month

Government Knowledge of Risks Government knew of the risks of importing blood product by mid 1970s – WHO advice in 1975 to become self sufficient – David Owen steps to become self sufficient – DOH officials appreciate concerns over imported blood BPL inspected in 1979 and found to be not fit for purpose Government hid behind Crown Immunity to dispense with the requirements of Medicines Act 1968 Either through inability to become self sufficient despite multiple warnings, or by ignoring the warnings of imported blood products, Government knew that risks were being taken in exposing haemophiliacs to blood bourne viruses.

HIV / HCV Infection Rates UKIreland Total Infected HIVHCVHIVHCV * %97.0%26.0%55.3% UK infection rate of HCV almost double that seen in Ireland despite similar sourcing of blood product UK HCV infection rate higher than US ( 65% ) WHY ? * estimated

Archer Report / Contaminated Blood Bill Archer Report published 23 rd February 2009 – Statutory committee to advise Government – Haemophiliacs tested for listed direct diseases – Every blood donor tested for listed diseases – NHS treatment not freely available on NHS – Secured future for Haemophilia Society – Direct financial support – Insurance scheme – Look back exercise Contaminated Blood Bill ( re-introduced to House of Lords 26 th May 2010) – Establish a committee to advise on haemophilia; – to make provision in relation to blood donations; – to establish a scheme for NHS Compensation Cards – to make provision for the financial compensation of people treated with and infected by contaminated blood and blood products and their widows, dependants and carers – to establish a review of the support available for people who have been treated with and infected by contaminated blood or blood products; and for connected purposes.

‘Compensation’ schemes to date Differentiation between those infected by HIV and HCV HIV – Macfarlane Trust £20k lump sum + lump sum dependant on circumstance up to £62,500 Annual payments of £ 12,800 p.a. From Apr 2009 Established at a time when patients expected to die within a couple of years – Eileen Trust up to £60,000 p.a. dependant on circumstance HCV – Skipton Fund 2 stage payments ( £20 k and £25k subject to extent of liver damage) No on-going financial support Arbritary cut off dates Widows and dependant children largely ignored Parents ignored

Legal Actions Judicial Review into Government response to Archer Report Formal Government response due by 21 st September 2010 Funding secured for exploratory work into legal action on vCJD exposure in haemophiliacs. Further legal actions and Judicial Reviews remain options New information becoming available on other pathogens which could lead to further legal actions ( Hep G, Parvovirus, Cryoglobulin, XMRV, PTSD ) On going prosecution in Scotland ( Penrose Inquiry)

Widespread Political Support for Compensation David Cameron – June 2009 Baroness Ruth Rendell – Jan “The moral question for compensation the Society puts forward is unanswerable - as is the case for equal treatment for those with hepatitis C and those with HIV” - Norman Lamb MP Lib – Dem - 18 th December 2009

Personal Stories A daughter’s story A wife’s story Mild Haemophiliac Married, two children Hepatits C via NHS Factor VIII given as a child No discussion, no debate on change in treatment to Factor VIII Two liver transplants – no future transplants Cancer MRSA, C.Diff Exposure to vCJD Worked in a senior international role for major FMCG company Retired on the grounds of ill health Dec 2009 Huge financial impact of loss of job – conservatively estimated at £2.2M NO on-going financial support of any kind Life turned upside down A patient’s story