All roads led to the Tolbooth in Stirling on March 19th 2014.
The date marked the first conference of its kind for at least eight years and one focused purely on putting the patient’s first on matters relating to the hepatitis C virus (HCV).
Dr John Dillon (right), a leading clinician in the field from NHS Tayside presented an overview of the current state of play with new and emerging therapies to treat HCV. He explained that they have a higher success rate and offer the potential of treatment without interferon. However, he stressed that to seriously reduce the amount of cirrhosis in Scotland the number of people treated every year has to continue to rise. As a result there are questions to be answered in order to bring interferon free therapy with very mild side effects to Scotland. At the moment the options available in the very near future include interferon to lessen the costs. The point being that although we are all excited by the new treatments on the horizon, in reality the cost of these treatments mean that there are tough choices to be made and the new drugs may not be with us quite so soon.
Michael Matheson, the Scottish Minister for Public Health opened the conference and restated the Scottish Government’s commitment to eradicating hepatitis C within our lifetime.
Charles Gore (right), urged hepatitis C patients to challenge this saying: “what’s good for public health is not necessarily good for the individual patient.” His presentation on patient activism highlighted why as patients we need to maintain the pressure on the health authorities. Our job is to make sure that we get the best drugs. There must not be two tiers of people; those that get the best treatment and others who have to go through interferon first.”
The most popular workshop by far was the look at drug trials, Elaine Matthews, who manages drug trials for patients with Hepatitis C in Gartnavel General Hospital, Glasgow gave an overview of the trials currently taking place there, how they work and how they are accessed, she said: “It is a privilege to look after patients who are prepared, despite all the difficulties they may have in their lives, to put their trust in us, it’s also fabulous to see a cure for this isolating disease take shape in front of us.”
Such was the demand for this event as people look at all the treatment options available to them, it was fully subscribed and many people were unable to take part. The Trust’s Scottish Officer Petra Wright says: “We hope to revisit this at the next meeting of The National Patient Forum in April.”
All in all the patient conference was a day of sharing experiences, making friends and for many, a confirmation they were not alone. A huge thank you to all who made it to Stirling and for the valuable contribution you made to the day. It was a great experience and we hope to do it all again next year.
A full conference report is being prepared if you would like to get an electronic copy to your mailbox please register your interest by emailing your details to our Scottish Officer, Petra Wright: Petra.Wright@hepctrust.org.uk
The Hepatitis C Trust would like to thank Haemophilia Scotland for their help writing this article.
Click on the links below to view presentations from the patient conference.
Charles Gore - patient activism
Dr John Dillon - new treatments for hepatitis C