Glenda and Alex showing their support for World Haemophilia Day 2018
April 17 marks World Haemophilia Day. This year’s theme is “Sharing Knowledge Makes Us Stronger.”
The bleeding disorders community is filled with the first-hand knowledge and experience needed to help increase awareness, as well as to improve access to care and treatment. The WFH website has an extensive and informative resource base. http://elearning.wfh.org/
Another way of sharing knowledge is by meeting with others in our community. We organise a regular events programme which is FREE for members. It’s a fun and engaging way to make friends and share knowledge and experience.
To show support and raise awareness of bleeding disorders, landmarks across Scotland will be lit red. Haemophilia Scotland has received confirmation that these landmarks are are: Edinburgh Castle, Glasgow Science Centre, Horse on the M8, Jenners Department Store (Edinburgh), Melville Monument (Edinburgh), Ness Bridge, SSE Hydro, The Titan Crane and Marischal Hall (Aberdeen). Show your support and post photos on our Facebook page of you and your friends at the landmark. #WHD2018
We are extremely grateful for a big box of fantastic fabrics which will be used as part of the quilting project being launched by our Women’s Group on the 24th of September.
It was donated by the good people at John Lewis in Glasgow and will really get the project off to a flying start.
If you’d like to join us at the Scottish Quilt Championships and for afternoon tea then please register today.
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.
The 17th of April every year is World Haemophilia Day. This year’s global theme of ‘building a family of support’ is something we are strongly in favour of at Haemophilia Scotland. Our mentoring and events programmes are all about helping the community come together in Scotland to provide mutual support.
Yesterday, we attended the European Haemophilia Consortium World Haemophilia Day event in Dublin. We really appreciate this chance to come together as a family of patient organisations and talk about the big issues we all face – in this case the importance of patients in tendering for clotting factor products.
Today, we are delighted to have been invited to join the team at the Glasgow Haemophilia Centre for their World Haemophilia Day celebrations. Glasgow is famed for its hospitality – as everyone who comes to the World Federation of Hemophilia Congress in 2018 will discover. Today that hospitality means we will be enjoying a vintage tea party!
On Saturday the 25th we are holding our own World Haemophilia Day Event. A dedicated band of fundraisers are “Walking RED Malawi” from Blantyre to Glasgow Green. They are walking in tribute of the historic ties between Scotland and Malawi, first forged by David Livingstone who used to walk the same route to attend University. All funds raised will support our work with the newly established patient association in Malawi. It is not too late to sign up if you would like to take part.
This short video from the World Federation of Hemophilia (WFH) highlights some important issues.
- Women with bleeding disorders experience symptoms, including but not just, heavy menstral bleeding.
- Those symptoms lead to a reduced quality of life in all eight of the key measures.
- The importance of Factor replacement treatment.
This year the meeting was held in Yorkhill, Glasgow.
On Friday 14th November the Scottish Haemophilia Centre Directors held their annual meeting with representatives of patient groups. This has been a long standing meeting and is an opportunity to discuss current issues and improve understanding. Although it is often called the Scottish Haemophilia Centre Directors meeting, the Nurses and Data Managers from the Scottish Centres are vital members too. Please bear in mind this is not an approved minute of the meeting and therefore may not be a complete record.
Regular readers will know that everyone at Haemophilia Scotland is very excited that the World Federation of Hemophilia is bringing it’s conference to Glasgow in 2018. We think this will be an exciting opportunity for everyone involved in bleeding disorders to Scotland to have access to the very best information from around the world.
However, many of you may not know much about what the WFH do and why their work is so important. The recently released video above gives some highlights from the presentation by WFH President, Alain Weill, at this years conference in Melbourne. In particular he talks about the challenge of making sure everyone is informed about the new therapies and the work they do to get treatment to people in developing countries.
Dan Farthing visiting ProFactor Pharma’s base at the BioCity facility at Newhouse, just outside Glasgow.
ProFactor Pharma Ltd (PFP) is an exciting new biopharmaceutical start-up working on producing recombinant clotting factor products, right here in Scotland.
The company was set up in 2012 with the aim of using the very latest techniques and technologies to produce a variety of recombinant clotting factor products, starting with a Factor VIII product (rFVIII). They hope that their new Chinese Hamster Ovary cell line will express the molecule far more efficiently than other lines and that new manufacturing processes will keep costs down. Their aim is to produce a product which can increase supply to emerging markets such as Central and Eastern Europe and drastically improve patient care.
While they are getting very encouraging results their product will have to pass a range of toxicology tests and clinical trials before it comes to market. However, if everything runs smoothly then there could be a new Scottish product on the market by the time that the World Federation of Hemophilia (WFH) Congress comes to Glasgow in 2018.
Although the Scottish Government is supporting the venture through Scottish Enterprise they tell us that securing all the necessary investment is a much bigger challenge than overcoming the technological obstacles. So if you happen to have a few million pounds burning a hole in your pocket they’d be delighted to hear from you.
Haemophilia Scotland is supporting the work of the EHC on longer acting clotting factor products
All three of the bleeding disorders organisations with the most influence in Europe have written a joint letter raising concerns about how the first longer acting clotting factor products to get market authorisation might be treated within the EU.
The European Haemophilia Consortium (EHC), The European Association for Haemophilia and Allied Disorders (EAHAD), and the World Federation of Hemophilia (WFH) have joined forces to oppose the classification of the new longer action clotting factor products as orphan drugs in Europe. Such a decision would mean that the first longer acting Factor VIII and Factor IX products to secure market authorisations would have a 10 year monopoly in the European Union.
The campaign highlights that the range of products currently being developed contain difference active substances so shouldn’t be considered as sufficiently “similar” to activate the orphan drug exclusion.
The letter raises four key concerns if ten year exclusivity was granted.
- The potential benefits from better products based on different mechanisms of action may never be realised in Europe;
- Patients will be deprived of potentially better clinical options for their individual clinical needs;
- There will be no competition and therefore higher prices – thereby potentially hindering or severely limiting patient access to these products in Europe; and
- There will be no cascading effect on lowering prices for current treatment products or broadening market access into European countries where patients have limited or severely limited access to treatment products.
Haemophilia Scotland are backing the campaign and have written to all six of Scotland’s newly elected MEPs urging them to give us their support.
Diagnosis can have a big impact on parents
Although some families find it helpful to spend time with older people with bleeding disorders it is important to remember that it can also be scary for patent who is new to the condition to meet people living with serious joint damage.
A bleeding disorders diagnosis can have a serious impact on the whole family. Sibling relationships and rivalries are complex but there are surprisingly few studies look at families with a bleeding disorder. There are positive sides to having a brother or sister with a bleeding disorder. It can help improve a child’s ability to take responsibility as well as their communication skills. However, some siblings, especially sisters and middle children, can experience anxiety and feelings of guilt. It is striking brothers report that they believe that their own quality of life would be better if their sibling didn’t have a bleeding disorder. Siblings also say that they need more information about bleeding disorders and that they need more time and attention from the adults in their lives.
A common mistake it to encourage guilt and to expect inappropriate levels of responsibility from young siblings; siblings shouldn’t be seen as supplementary care givers. However, it can be very helpful for siblings to feel involved and to be encouraged to ask questions and express their feelings about the impact of the bleeding disorder on the family. As far as possible parents should treat and discipline all their children the same way. However, ultimately, the best way to support children with bleeding disorders and their siblings is to support their parents and trust them to make good decisions.
Seeing your child in pain can be extremely distressing; as can having to hold a child down to find a vein and for treatment. Parents often also feel an enormous weight of responsibility which can make it hard to let others, even another parent, care for a child with a bleeding disorder. However, family bonds can be strengthened by the experience and some parents are more relaxed once they can do treatment themselves at home.
Adolescence is a difficult time for parents. It is hard to step back and let a young person start taking responsibility for their treatment and to make their own mistakes. Adherence to treatment can often worsen in this period as well. Transition to an adult Haemophilia Centre can also add stress; although often parents are more worried about this than their adolescent with a bleeding disorder.
Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.