On Monday 15 June, to raise awareness of the debate on access to medicines for ultra-rare diseases, …
On the 25th of March 2015, the final report of the Penrose Inquiry was published. The Penrose Inquiry, a Scottish Public Inquiry into Hepatitis C/HIV acquired infection from NHS treatment in Scotland with blood and blood products, was set up by Scottish Ministers under the Inquiries Act 2005.
At the recent Cross Party Group on Rare Diseases meeting earlier this month, Dan Farthing Sykes (Haemophilia Scotland) provided a report on the Penrose Inquiry. Dan explained that in the late 1970s and early 1980s, the introduction of new Factor VIII and Factor IX Concentrates had doubled the life expectancy for severe Haemophilia to over 55 years. However, these products were made using manufacturing pools containing blood from thousands of blood donors and if one donor had a blood borne virus, such as HIV or Hepatitis C, the batch of products would become infective. This led to a significant number of Haemophillia patients being infected with HIV or Hepatitis C. Dan reported the number of infections and deaths and gave some idea of the impact of the disaster and outlined how the need to campaign for decades had been an extra burden on the community.
The Penrose Inquiry took more than six years to complete and an estimated cost of £12 million. The Inquiry involved 89 days of oral evidence, however many people felt disappointed that they had not been given the opportunity to give evidence. Dan highlighted just some of the powerful evidence that was confirmed by the Report.
Dan explained that for many of those affected, the report was considered a whitewash. The lack of a strong condemnation of the disaster, that individuals were not held to account, and that no recommendations about learning lessons in relation to bleeding disorders were made, have all contributed to the sense of betrayal of those affected.
Dan highlighted what actions Haemophilia Scotland, and others, have called for and what had happened so far in response. In particular, the Scottish Government apology, accepting moral responsibility, has been important to many people. A Financial Support Review Group is being established to advise the Scottish Government on how financial support should be provided. It is has been agreed that getting people the financial support they need is the top priority.