Continuing to hear evidence from individuals involved with the Haemophilia Society, today, the Inquiry heard from the former chief executive of the Haemophilia Society, Karin Pappenheim. Ms Pappenheim was the Chief Executive of the Society from March 1998 to April 2004. Ms Pappenheim was also a Trustee of the National Council for Voluntary Organisations between 1999 and 2005, and a Trustee of the Terrence Higgins Trust from 1998 to 2003.
During her time as Chief Executive of the Haemophilia Society, Ms Pappenheim managed employees of the Society who were involved in counselling individuals with hepatitis and HIV. The counselling provided by the Society encompassed both peer support in the form of group meetings and one to one meetings. Ms Pappenheim stated that during her tenure as Chief Executive, membership of the Society was broad and consisted of young haemophiliacs, older haemophiliacs and those infected with HIV and hepatitis.
The Inquiry heard how during her time as Chief Executive the society focused on three areas of campaigning; the campaign for financial assistance for those infected with hepatitis C, the campaign for a public inquiry and the campaign for recombinant factor products. Other areas of campaigning included raising issues about availability of treatment for hepatitis C victims and postcode lotteries in relation to Interferon and Ribavirin.
Counsel to the Inquiry, Ms Richards QC referenced a letter from June 1998 that was authored by Ms Pappenheim. The letter to Baroness Ramsay, Parliamentary Undersecretary of State for Health, set out the Society’s argument for the government to accept moral responsibility for the contaminated blood scandal rather than legal liability. Ms Pappenheim stated that it was an objective of the Society to focus on the moral argument and hoped to gain public support for this.
The Inquiry heard how under Ms Pappenheim’s lead; the society held a Haemophilia Society Day of Action in 1998 for hepatitis C victims. The purpose of the event was to urge the government to respond to the financial plight of victims. However, the government did not move in the direction the society hoped and rejected their calls for financial recompense for victims. Ms Pappenheim told the Inquiry that the society changed their approach on the issue of financial relief and focussed their attention on calling for a public inquiry. The society used Canada and Ireland as examples of how the UK government should have approached the issue, with both countries providing financial relief and a public inquiry for victims.
Ms Pappenheim told the Inquiry how she had attended meetings with ministers in 1999 and early 2000 regarding financial relief for hepatitis C victims. However, the approach remained the same that the government would not be changing their stance.
Counsel to the Inquiry referred to the Haemophilia Society’s Bulletin for the summer 2001. The Bulletin discussed how the Society had hired one of the world’s largest public affairs consultancies to assist with campaigning for a public inquiry and a hardship fund for hepatitis C victims.
In 2003, both Scottish and Westminster governments announced a financial scheme for hepatitis C victims. Ms Pappenheim remarked that these announcements were a relief to many members of the Society but also came out of the blue.
Concluding her evidence, Ms Pappenheim thanked the Inquiry for the opportunity to provide evidence and hoped what she had provided in terms of evidence had been helpful.
For a transcript of Ms Pappenheim’s evidence, please click here https://www.infectedbloodinquiry.org.uk/sites/default/files/documents/Transcript%20-%20London%20-%20Thursday%2027%20May%202021%20%28Karin%20Pappenheim%29.pdf