Another year has ended for those affected by aHUS.
For some sadly it would have proven to have been their last.
For others it has been the beginning of the road out of kidney failure and a life of dialysis, which so many others with no access to eculizumab are still left burdened.
In the coming twelve months many people will encounter aHUS having no idea today about what will hit them.
And so it goes on. Our hope is that bit by bit more will survive and in good health.
The aHUS alliance has continued its mission in 2018 to enlighten the world about aHUS for yet another year.
For the first time in over three years the affiliated national aHUS organisations, which make up the alliance, met. Not all , but most.
Representatives from ten nations including aHUS Rest of World representative Jeff Schmidt gathered in Nijmegen in The Netherlands. They continued to learn about and share what is happening in the world of aHUS.
aHUS alliance affiliates in Nijmegen
Re-energised, the affiliates agreed to tackle global aHUS issues in a collaborative way.
Top of their concerns was the barriers to access to treatment for most aHUS patients in the world and Alexion’s pricing policy’s role in creating such barriers.
The aHUS dialysis patients without access to eculizimab and/or transplants was seen as a special group that needs more attention to rid it of the discrimination it faces.
Also there was an agreement to conclude the aHUS Patients Research Agenda Project by Rare Disease Day 2019. ( For more info click here)
The alliance also decided to continue its relationship with the aHUS Registry, albeit with reservations about Alexion’s role and behaviour in it. Patients data must not be used to puff up Alexion’s product and its price.
The alliance also recognised there were barriers to effective collaboration and agreed to address and resolve them before the next alliance conference.
Not that there are many barriers to working together for aHUS Awareness Day each September 24 . 2018 was no exception and let’s get more to “rise above aHUS “ in 2019
The aHUS alliance Global Action which supports and facilitates global connectivity and agreed collaboration on behalf of alliance affiliates ends the year with a website and social media outreach at record levels. It’s social media brings aHUS news almost daily and it’s website is like a “World of aHUS” magazine. All done by volunteers dedicated to just “informing” anyone who wants to know about aHUS.
It has developed respected relationships with influential clinicians and Pharma. Its independent and forthright dialogue with Pharma on behalf of global aHUS patients has been particularly well received and forms the basis of ongoing discussions.
Prof. Mignon McCulloch of the Red Cross War Memorial Children’s Hospital, South Africa
One of the most significant moments of the aHUS year was when two eminent South African clinicians set out on the aHUS alliance website a proposal for a new model for compassionate access to eculizumab in counties where Alexion refuses to market its product. No movement from Alexion as yet. Unless Alexion’s Chief Executive, Ludwig Hantson’s recent tweet about patients being his guiding star is not to be believed then there are stars in countries like South Africa for him to follow. Will the stars align in 2019 Ludwig? See article here
Another significant event of the past year was the alliance “whistlestop tour” of European aHUS centres of excellence. We all like to think that our hospitals are experts in our treatment, but some hospitals know so much more about aHUS than most. This is because of decades of research into the illness with many examples of breakthrough discoveries, benefiting aHUS patients everywhere. (Click here for the first of the reports about it ) The alliance has developed links with ERKNet, as well as the Expert Centre in Nijmegen which shared its information about an economic approach to aHUS treatment. ( click here).
AHUS alliance Global Action continues to focus on developing patient advocacy .Supporting emerging national organisations as they begin their advocacy journey.
An example of patient advocacy in action has featured on its website with the story of one such organisation which started from nothing and which went on to achieve exceptional and extraordinary results. aHUSUK probably faced the most demanding of challenges of any aHUS patient organisation in the world , with perhaps the exception of aHUS Canada and the aHUS Patient Support Group Australia. A lot can be learned, and inspiration can be gained, by newly forming groups just by reading the history of the U.K. group and its contribution in advocating for a world class aHUS treatment service for its country’s patients. Read here.
The aHUS alliance Global Action operates with a transparency and professionalism second to none , despite what some of its detractors might say. Long may it be allowed to do so.
So another year over and another just begins and the alliance is looking forward to at least one more year in the service of those affected by aHUS
aHUS Advocates everywhere say “Bring it on!”
Conrad Von Gasser’s Swiss Cowbell