This World AIDS Day, Haemophilia Scotland is remembering those we have lost to the virus and thinking of their families and friends. We are also thinking of our members who fight the virus on a daily basis. Our long term survivors and their loved ones are living with the consequences of the contaminated blood disaster.
World AIDS Day is an international day to remember those who have died because of AIDS, to prevent new cases of HIV and to stand in solidarity with people living with the virus.
This year, charity partners and NHS partners are challenging us with the question of “What will you do?”
- What will you do to remember those who have died because of AIDS?
- What will you do to prevent new cases of HIV?
- What will you do to challenge stigma and prejudice?
One of the ways that we remember those who have died because of AIDS is through the Contaminated Blood Memorial Fund. The Fund is bringing bereaved families together to plan, and raise money for, a lasting memorial to those who have died as a result of the contaminated blood disaster in Scotland.
To contribute to the Memorial Fund, you can:
Richard Lyle MSP and the then First Minister, Alex Salmond, meet the Russians delegation at the Scottish Parliament during their stay in Scotland. Also featured are Haemophilia Scotland Chairman Bill Wright and our Honorary President, Susan Warren, who organised the Russian group’s visit and was our Vice-Chair at the time.
St Andrew isn’t just the patron state of Scotland, he is also the patron saint of Barbados, Romania, Russia, and the Ukraine.
So today seems like a good moment to look back to 2013 when Haemophilia Scotland played host to a group of about a dozen young Russian men with bleeding disorders.
They were successful finalists in a competition where the prize was a two-week visit to the UK. The once-in-a-lifetime opportunity enabled about many of them to travel abroad for the first time.
They spent time in London and Scotland, meeting other people affected by bleeding disorders and enjoying new experiences. While in Scotland they visited the Scottish Parliament in Holyrood, where they met First Minister Alex Salmond (pictured above). In Inverness they took part in a traditional ceilidh. Susan Warren looked after the group throughout their time in the UK and made them very welcome.
We were a relatively new charity at the time but have maintained our commitment to playing our part in the international family of bleeding disorders charities. That is one of the reasons we are so excited to have the WFH Congress coming to Glasgow in May next year and are delighted that our Women’s Group will be hosting the Women’s Booth at the conference. We are particularly proud of our recent Malawi Diagnosis Project with our friends in the Society of Allied Bleeding Disorders in Malawi too.
If you’d like to know more about how bleeding disorders are experienced in other countries, these are the patient organisations in those who share Scotland’s national saint.
We had a fantastic time yesterday at the practical sewing session in Glasgow where a flurry of ideas and inspiration floated about in abundance.
For inspiration, we used the eclectic fabrics from the D’Ambrosio family, quilting magazines and the corners of our collective imaginations!
You don’t need to be an expert at quilting to participate in this collaborative project. It can really be as simple as finding a printed panel and personalising it yourself.
We’ve extended the deadline to take part in the Quilt Project to November 17, so it’s not too late to get involved!
The next practical sewing session will be held on level 3 at our office in Edinburgh on November 11, between 11:00am-2:00pm. Register for the session now.
Don’t worry if you can’t make the session as we will organise another session for Glasgow and Edinburgh in January, before the January 31 deadline.
A recent paper from the Centers for Disease Control and Prevention (CDC) covers the death of two people with inherited bleeding disorders from Sporadic Creutzfeldt-Jakob disease (sCJD) in 2014. Both of the people concerned were women. One had Type 3 von Willebrands and the other carried the Haemophilia B gene. These are the first deaths from sCJD in the bleeding disorders community anywhere in the world.
Most of the concern in the bleeding disorders community around CJD has been about variant Creutzfeldt-Jakob disease (vCJD). This is thought to be the human equivalent of bovine spongiform encephalopathy (BSE), known as mad cow disease. Many of our members were informed in 2004 that they are at increased risk from vCJD for public health purposes. This risk relates to being treated with blood products made from plasma donated by people in the UK who had eaten BSE implicated beef or went on to develop vCJD. Although in 2008 vCJD implicated prions were found at post-mortem in the spleen of a man with severe haemophilia A who died of other causes, nobody with a bleeding disorder has ever developed vCJD. To put that in context, a study found that 1 in 2000 people in the UK carry the implicated prion, which is the equivalent to 32,500 people. At the moment there have been 178 cases of vCJD in the UK.
The news from the CDC related to a different form of CJD, sCJD appears to occur at random in the population at the rate of about 100 a year in the UK (fewer than 10 in Scotland). It mainly affects people of middle age and older and has been known about since the 1920s. It is a rare condition which is why there being two cases in recipients of blood products is unusual enough to trigger an investigation. It is not known whether these cases are related to being treated with plasma derived clotting factor products or whether these cases are coincidental. The CDC paper says, “Assuming an annual incidence rate of sCJD of 1.5–2.0 per million population the occurrence of 2 cases of sCJD in this total population may not imply a causal link between the treatment and the occurrence of the disease.”
There is active surveillance both in the UK and internationally for both sporadic and variant CJD. In the UK the National CJD Research and Surveillance Unit is based in Edinburgh and examines all cases of CJD in detail. In these new cases they determined that they were sCJD (rather than vCJD ) by looking at how the disease progressed and where the CJD associated prions were found.
Prion diseases such as vCJD and sCJD are not well understood. There are still a lot of unanswered questions. Haemophilia Scotland have highlighted the CDC paper to the Scottish Government, the Scottish Inherited Bleeding Disorders Network, and are looking into any potential legal implications. We will be carefully monitoring the situation and will report any further developments on our website and to our members.
Further information about these cases can be found in a briefing paper produced by the European Haemophilia Consortium (ECH). There is more information about CJD on the NHS Choices website. The best place to go with specific medical questions about your health is your Haemophilia Centre.
Today is World AIDS Day. Since the Penrose Report was published we know that at least 59 people were infected with HIV in Scotland by being treated with contaminated plasma derived clotting products for their bleeding disorder.
They were some of the first people in Scotland to be infected and endured the early experimental treatments and suffered the extreme levels of stigma that came with the public panic about the virus. Everyone who lived through that period remembers the media stories and the impact it had on the way everyone with a bleeding disorder was treated. Tackling the stigma associated to HIV is a central plank of this year’s World AIDS Day campaign under the slogan “It’s not just retro it’s wrong.”
Of the 59 people infected there are just 20 long term survivors left. The pain of those families who lost a loved one hasn’t gone away. The long running campaign for answers about how this could be allowed to happen, to make sure all relevant lessons are learnt, and for their to be proper financial support, has taken its toll on many affected families. Everyone who was treated for a bleeding disorder in the 1970s and early 1980s was exposed to Hepatitis C, including everyone who was infected with HIV. That meant the disaster caused 478 Hepatitis C infections in people with bleeding disorders.
We also remember that it wasn’t just people with bleeding disorders who were infected. There were an unknown number of people who were infected with HIV through a blood transfusion and up to 2,500 may have been exposed to Hepatitis C as a result of the contaminated blood disaster in Scotland.
How you can help
You can help by increasing your own knowledge about the contaminated blood disaster and making sure other people hear about it too. There are summaries on the Haemophilia Scotland website and the Penrose Report can be downloaded online. However, a great way of understanding the impact of the disaster is to watch the powerful Dogstar play, Factor 9. You’ll need the password “Inverness” to view it.
The password is “Inverness”
Secondly, some of the bereaved families are working together to construct a lasting memorial to the victims of the contaminated blood disaster in Scotland. Their fundraising is going extremely well but continued efforts are needed if their loved ones are to get the fitting memorial they deserve. Donations can be made online or by texting CBME23 and the amount to 70070. So, to donate a tenner your text should read “CBME23 £10”.
The European Haemophilia Consortium (EHC) has been working with acclaimed director Goran Kapetanovic. He has created a powerful documentary which reveals the variety of experiences people have of living with bleeding disorders across the continent.
His 53 minute documentary, “What is it like to live in Europe with haemophilia?” is available to all for free online on the Haemophilia Stories website.
We hope that everyone who cares about haemophilia and related bleeding disorders will enjoy the film and share it as widely as possible.
For the high quality version of the documentary and to see individual stories please go to Haemophilia Stories website.
We are delighted that our friends in the Society of Haemophilia and Allied Disorders in Malawi continue to go from strength to strength. They were accepted as an Associate Member of the World Federation of Hemophilia (WFH) at Global Congress in Orlando in July.
WFH President, Alain Weill, said,
I am extremely pleased to welcome the Society of Haemophilia and Allied Disorders (SHAD) in Malawi to the WFH family of National Member Organisations (NMOs). The accreditation of SHAD as an NMO is the result of relationship building with Malawi by WFH staff and volunteers that dates back to 2013. I am thrilled that this effort bore fruit, and that we will continue to work closely with SHAD to support their efforts to improve care for patients with hemophilia and related bleeding disorders in Malawi. I would also like to extend my thanks and gratitude to Haemophilia Scotland for all the excellent support they continue to provide to SHAD and its staff.
Haemophilia Scotland CEO, Dan Farthing-Sykes, said,
Haemophilia Scotland is honoured to have played a part in supporting our friends at SHAD and are delighted to see them get this international recognition. Working with SHAD to deliver our joint Malawi Diagnosis Project has show just how much can be achieved when organisations like ours come together. We look forward to many more years working together to improve the diagnosis, treatment, and care of people with bleeding disorders in Malawi. Anyone wanting to support this work can donate to the project directly using Just Giving.
The WFH constitution prohibits Haemophilia Scotland from becoming an NMO ourselves but we work closely with the WFH as part of our international work. We are particularly excited that the WFH Congress will be in Glasgow in 2018 and will be working with The Haemophilia Society to make that a success.