Today is World Hepatitis Day. Worldwide it is estimated that there are 300 million people living with undiagnosed viral hepatitis. The international theme for World Hepatitis Day is to find the ‘mission millions’ so that they can be offered treatment. There are thought to be 15,500 people with undiagnosed hepatitis C in Scotland alone.
Viral hepatitis is well known to the inherited bleeding disorders community as a result of its transmission by early, plasma derived, clotting factor products. In Scotland, 478 people with bleeding disorders were infected with Hep C when they were treated by the NHS with contaminated blood products in the 1970s and 1980s. Haemophilia Scotland work closely on this issue with the Scottish Infected Blood Forum who also represent those infected by NHS blood transfusion. 2,500 people in Scotland were exposed to viral hepatitis through blood transfusions before September 1991.
The only recommendation of the Penrose Inquiry into the contaminated blood and blood product infection was,
that the Scottish Government takes all reasonable steps to offer an HCV test to everyone in Scotland who had a blood transfusion before September 1991 and who has not been tested for HCV.
In response the Scottish Government established a short-life working group to investigate implementing it. It’s terms of reference were broadened to include estimating the,
number of living HCV-infected individuals who acquired their infection through the receipt of plasma products pre-1987 and who remain undiagnosed.
As a result the working group conducted some investigatory work using the names of people who may have been treated in Scottish Haemophilia Centres but had been lost to follow up. Therefore, it is unlikely that there are many people infected by contaminated blood products in Scotland and not diagnosed. Therefore, our focus now is on ensuring everyone who has been exposed to viral hepatitis, and other blood borne pathogens, in this way has access to appropriate support and financial payments.
Fulfilling a commitment made in accepting the recommendations of the Contaminated Blood Financial Review Short Life Working Group, the Scottish Government commissioned another Short Life Working Group, this time on the Clinical Review of the Impacts of Hepatitis C which was published on the 11th of July. That weekend, Haemophilia Scotland and the Scottish Infected Blood Forum held a meeting for members which was addressed by Prof. David Goldberg, who chaired the review group. The meeting gave those affected and opportunity to discuss the report, its findings and its recommendations.
The review makes a strong case that those in the current chronic (stage 1) category for financial assistance from the Scottish Infected Blood Support Scheme haven’t had the full impact of their infections acknowledged. It also highlights the lack of support for some of their widow(er)s and bereaved families. It proposed that those who qualify for the scheme are asked to self declare if they have suffered a serious impact from the disaster to trigger ongoing support payments. However, as a clinical review, it hasn’t made specific recommendations on what level of financial support should be provided.
This week Haemophilia Scotland and the Scottish Infected Blood Forum have jointly written to the new Cabinet Secretary for Health and Wellbeing, Jeane Freeman MSP, to feedback on the meeting and inform her of the views of patients in Scotland. We are now waiting for the official Scottish Government response to the report and have offered to meet with the Minister to help with that process.
Bereaved families in Scotland are raising money for a lasting memorial to commemorate the lives of those affected by the disaster. Please make your donation today.