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Welcome to the latest edition of the Hepatitis Scotland e-Bulletin.
The release of the long awaited Penrose report was met with dismay by many of those assembled to hear the results of Lord Penrose's 6 year long inquiry. Those affected by infected blood products and their families were angry that the report only had one recommendation. Lord Penrose's statement said, "Careful consideration of the evidence has however revealed few aspects in which matters should or, more importantly, could have been handled differently." Longstanding campaigners were scathing of the report, with many calls of "whitewash" from the audience. Campaigners pointed out that the report has been delayed due to the warning letter process but no blame was attributed in the report.
Scottish Health Secretary Shona Robison has apologised on behalf of the NHS and Government in Scotland to all patients and families affected by infected NHS blood and blood products in Scotland during the 1970s and 1980s. She also confirmed the Scottish Government will carry out a range of measures for those affected well beyond the sole recommendation of the Penrose Report.
During Prime Minister's Questions, at the same time the report was released, the UK Prime Minister apologised for a National Health Service treatment disaster that inadvertently infected thousands of patients with deadly diseases.
The inquiry recommended that the Scottish Government takes all reasonable steps to offer a HCV test to everyone in Scotland who had a blood transfusion before September 1991 and who has not yet been tested for HCV.
Hepatitis Scotland's information line (9am - 5pm) is on 0300 343 0250. NHS Inform (8am - 10pm) is at 0800 22 44 88. Hepatitis C Trust's confidential helpline (10.30am to 4.30pm) is at 0845 223 4424. Hepatitis Scotland's service finder to find testing local services other than your GP is here.
30 April 2015
Grand Central Hotel, Glasgow
This conference will look at recently emerging issues and some of the service response such as the 2015 botulism outbreak in heroin injectors, injecting new psychoactive substances, trends and potential harms involved in injecting Performance and Image Enhancing Drugs), injecting and chemsex among men who have sex with men and trends of substance use amongst vulnerable and looked after and accommodated young people.
Visit the Scottish Drugs Forum website to book your place.
The Inaugural World Hepatitis Summit, a joint event between the World Health Organisation and World Hepatitis Alliance, will take place in Glasgow on September 2nd – 4th. The event, hosted by the Scottish Government and supported by Glasgow Caledonian University and Health Protection Scotland, aims to directly address the overwhelming global burden of viral hepatitis. Find out more here.
New highly effective but also highly expensive Hepatitis C drugs (sofosbuvir and Harvoni from Gilead Sciences and Viekira Pak from Abbvie) are behind a significant increase in drug costs in the USA. Drug costs rose by 13.1% in 2014, the fastest rate of increase for over a decade, with spending on Hepatitis C drugs in 2014 743% higher than in 2013.
Despite this high cost a study has recommended that treating patients with Gilead's cocktail Harvoni, is cost effective in most patients, but that additional resources and value based patient prioritisation are needed to manage patients with Hep C. A separate study also recommends treating Hep C patients regardless of severity of liver disease, particularly where lower treatment costs are assumed.
Medicins Sans Frontieres has attacked Gilead Sciences pricing and access policies for their new Hepatitis C drugs, saying that the company is placing unacceptable conditions on patients and doctors.
Several Indian generic manufacturers produce and sell the drug at a vastly reduced price. Patients may only access these drugs if they have can provide identification and proof of citizenship and residency, which has major implications for patient access in third world countries. Charities such as MSF say that Gilead is using the pricing as a publicity measure to deflect criticisms previously used by HIV activists.
US AIDS charity Amfar has released a briefing on Hepatitis C drug pricing criticising pharmaceutical companies pricing strategies and stating that there is a policy imbalance between public sector contributions to their development and private sector reward.
The Portuguese government have announced that they have come to a deal with Gilead Sciences to for their Hepatitis C drug sofosbuvir, negotiating a price allowing more people to be treated for less than 25,000 euros (£18,600 approx) per 3 month treatment which will mean the treatment of up to 13,000 patients over a 3 year period, although they will not cover expenses if patients need any additional treatment.
The North Ayrshire Hepatitis C support group has just celebrated it's second year. The group meets monthly in Ardrossan and is facilitated by Chris Myles of the Prevention and Service Support Team, NHS Ayrshire and Arran Addiction Service. A community minibus collects people from around North Ayrshire to support people to attend.
One person attending the group for the first time said, “I’ve had more help and information today than I ever have before”.
Read a summary of what took place at the group's latest meeting and find out how to get in touch here.
The World Health Organisation has issued its first ever guidance on treatment for Hepatitis B. Among key recommendations are:
• the use of a few simple non-invasive tests to assess the stage of liver disease to help identify who needs treatment;
• prioritizing treatment for those with cirrhosis - the most advanced stage of liver disease;
• the use of two safe and highly effective medicines, tenofovir or entecavir, for the treatment of chronic hepatitis B; and
• regular monitoring using simple tests for early detection of liver cancer, to assess whether treatment is working, and if treatment can be stopped.
The WHO has recommended that health care programmes across the world switch to providing/using single use smart syringesin medical settings to protect millions of people from infectious diseases acquired through unsafe injections or repeat use of syringes.
56 Dean Street have launched eleven two minute videos on chemsex, including tips on playing safe, making changes, managing cravings, harm reduction and relapse prevention.
This report from Public Health England looks at the epidemiology of Hepatitis C in London, providing recommendations to stakeholders on measures to prevent further infections and to reduce the morbidity and mortality of those already infected.