This is the amazing run that one of our Trustees, Nikki Gandy, completed for Mile for Haemophilia. Go Nikki!
As you probably know, Alex Dowsett is an elite cyclist who also happens to have Haemophilia. He does an amazing job raising awareness of Haemophilia and inspiring people with bleeding disorders to be as active as they can be.
He has been the figurehead for the Pfizer Ltd awareness raising campaign, Miles for Haemophilia. We are proud to have been part of the campaign and want to thank everyone who took part, Together we have smashed last years target! Over 17,000 miles were pledged this year by 3,651 of you! Thank you for such an amazing effort. You can see Alex’s message from the Tour de France at the top of this page.
We are particularly pleased that 35% of those taking part had no link to Haemophilia. This shows that all the hard work has really helped reach out to the wider public.
Well done everyone!
Dan’s HepCScot Selfie
Today, Haemophilia Scotland joined Hepatitis Scotland and representatives from Waverley Care and several NHS Hepatitis Services, the Scottish Drugs Forum and the Hepatitis C Trust, to launch World Hepatitis Day in St Enoch’s Square, Glasgow.
Scottish organisations are working together, though HepCScot, to raise awareness about Hepatitis C and encourage people to consider getting tested. The launch attracted coverage from the BBC and in the Metro. Buses advertising the HepCScot campaign are now hitting the streets of Scotland too.
Dan Farthing-Sykes, Haemophilia Scotland CEO, said,
The HepCScot message about testing is particularly important this year. The only recommendation of the Penrose Report 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.” We are concerned that if there is anyone with a mild bleeding disorder who has been lost to follow up then they should be offered a test. The only way to achieve that might be through raising awareness though initiatives such as HepCScot.
For people with a bleeding disorder and Hepatitis C, liver disease is now the number one killer. That is why it is so important that everyone who was state infected with Hepatitis C have immediate access to the new Direct Acting Antiviral treatments. The Scottish Government has accepted their moral responsibility to those affected by the contaminated blood disaster. We are pleased that Shona Robison MSP, Cabinet Secretary for Health, Wellbeing, and Sport, has already made it clear that she believed it is very important for state infected people to have access to the new treatments if they are clinically suitable. We now need to set a realistic target for treating all those infected by the state as soon as possible.
Today, The Herald, made the UK Government’s failure to distribute the £25 million they announced before the election their lead story. They supported the story with a their top opinion piece in which they take issue with Ben Gummer’s concept of “speed” saying.
They should not be expected to wait any longer.
Again, there was good coverage of Haemophilia Scotland’s calls for the £25 million to be used to fund immediate interim payments.
Today’s Daily Record draws attention to the lack of progress from the UK Government on the contaminated blood issue and features strong comments from Bruce Norval.
In our comment we highlighted the desperate need for the £25 million that David Cameron has announced to be distributed to those affected as an urgent interim payment. There are too many people affected by the disaster who are struggling at the end of every week. While a new scheme is designed the UK Government must release the £25 million for interim payments. The Scottish Government has already made clear that if this were to happen then they would match the pledge for people in Scotland.
Diana Johnston MP, Co-Chair of the All Party Parliamentary Group on Haemophilia and Contaminated Blood today forced the UK Government to come to the House of Commons to defend their position. In response they announced that they would begin a consultation “in the autumn” which would conclude by the end of the year. This is simply matching the commitment which the Scottish Government has already made. However, the UK Government hasn’t matched the Scottish Government’s promise to have a new scheme in place by World Haemophilia Day (17th April 2016). The UK Government announcement still has not made clear how the £25 million will be spent.
The password is “Inverness”
This time last year the Kickstarter campaign to fund bringing the Dogstar play Factor 9 to the Edinburgh Fringe was reaching a crescendo.
Haemophilia Scotland was joined by 173 other individuals and organisations in helping make sure that the play was able to come to the fringe. What followed was an extremely successful run of performances; each delivered the story of the contaminated blood disaster in Scotland with great power and brought tears to the eyes of a lot of those who saw it.
Dogstar also performed excerpts from the play at the Haemophilia Society / The Hepatitis C Trust reception at the Scottish Parliament in December last year. This helped us provide vital briefing to MSPs in advance of the publication of the Penrose Report.
We are extremely grateful to Dogstar for their continued support. They have, temporarily, posted a recording of one of the performances online so that even more people can see the play. You will need the password “Inverness” to watch it.
Stuart, Laura Anne, Simon, Lynn, Susan, Bill and Matthew after another amazing performance of Factor 9.
Throughout June hundreds of people have been raising awareness of Haemophilia as part of the Miles for Haemophilia campaign. If you haven’t uploaded your pledge yet then it’s not too late to add your efforts to the total.
We’ve been getting involved here at Haemophilia Scotland. Our CEO, Dan Farthing-Sykes has cycled over 70 miles. One of our Trustees, Nikki Gandy, ran over 15 miles as part of the campaign.
The campaign recognised that for some people who wanted to take part travelling a mile would be a significant achievement. That is why it was up to those who took part to decide what their pledge would be.
Pfizer, the company behind the campaign, have confirmed they will be making a significant donation to Haemophilia Scotland on the back of the campaign. We are extremely grateful to them for their support and to everyone who got involved with the campaign.
For more information go to the Miles for Haemophilia website.