Prof. Tim Goodship sent us the following statement about the current position and the work being done by everyone to get a national treatment service in England ( and the rest of the UK).
Dear Friends
You will be aware that the situation with regard to access for eculizumab for patients with aHUS in England has changed and continues to change. At the beginning of April 2013 we were informed by NHS England that they would on a interim basis fund eculizumab for all newly arising cases of aHUS in England. This position has changed a little in that NHS England have now stated that “it is a principle to not let anybody with aHUS go into irreversible renal failure”. Whilst we are delighted with this our position has always been that all patients in England with aHUS should have ready access to eculizumab through a national service. We will not be satisfied until we achieve this.
The Clinical Priorities Advisory Group (CPAG) of NHS England will soon meet for the first time and will be considering the use of eculizumab in aHUS. We will do our utmost to persuade CPAG to extend the interim policy to cover all aHUS patients who might benefit from eculizumab. We have also encouraged Alexion to discuss with NHS England how the affordability issue could be addressed so that all aHUS patients in England might, if necessary, receive treatment with eculizumab. We have been informed that “Alexion has repeatedly approached NHS England in an attempt to negotiate a durable solution with proposals that would potentially address the affordability issue so that all aHUS patients in England could receive eculizumab if necessary.” We will encourage Alexion and NHS England to maintain a dialogue.
What has been achieved so far could not have been done without the fantastic support that has been provided through aHUSUK by patients, their families and their friends. To have submitted at the Houses of Parliament today a petition with nearly 30,000 signatures is a truly remarkable achievement which has generated substantial media interest. I have today been interviewed by both BBC Radio Leicester and BBC Look North! The sum total of all this will I am certain positively influence the response of organisations such as NHS England and NICE. I remain confident that we will achieve a national service for aHUS in England with ready access to eculizumab. We have not forgotten those of you in Scotland, Wales and Northern Ireland. We are doing everything we can to achieve equity for patients with aHUS in the four home countries.
Tim Goodship
Dr. Goodship, from the bottom of our hearts, we aHUS families in the USA salute and thank you for the tireless dedication you have committed to us. We are so thankful our family across the waters have you in their corner! I pray no family suffers while treatment is available, but not for them. The year before our son was transplanted was one of the most frustrating I’ve ever experienced, although dialysis kept him from having major health events, we saw his overall health and cognitive ability decline rapidly. He is now making great strides forward with continued treatment nad the addition of therapy. The hardest thing is thinking the delays, all centered around funding, are what caused the need for therapy. So, thank you Dr. Goodship for teying to lessen the delays for our extended family in Europe.
Thank you for your very kind comments Cheryl. I am delighted to hear that your son is doing so well. The progress that has been made in the past fifteen years in defining the cause of aHUS and developing an effective treatment has been helped enormously by the Foundation for Children with atypical HUS. The support that the Foundation has provided for those of us undertaking research into aHUS has been invaluable. So my thanks to you and your colleagues in the Foundation for all that you have done to enable us to get to where we are.
This is very interesting.
My son has just been diagnosed with Ahus.
He is 36 years old and we are all going through hell at the moment.
Do we have to ask for this treatment at the hospital or is it offered.
What does it actually do.
Sorry to sound so vague.
Prior to 3 weeks ao he was a health fit young man
Thank you
Janet