14 July 2019
Dear Alexion
On 1 January 2018 the aHUS alliance wrote an open letter to you ( click here to see a copy).
In the concluding sentences of that letter we asked :
” … is it understandable to the family of an aHUS patient in places where your product is not sold nor access is available, and who are overlooked.
You say a gift of life to be lit and celebrated, and complete the bond of humanity is what you aspire to.
As we begin 2018 the aHUS alliance is calling on you to do more to help more aHUS patients by finding a way to make a complement inhibitor that is affordable for all aHUS patients in more countries?
A patient “dividend” for a Happier New Year. Now that would bring a happy, healthy and safer 2018 for the many aHUS patients yet to benefit.”
We have waited to see signs of you finding a way to do more for more aHUS patients.
But still we heard about incidents where eculizumab was being denied and not marketed.
However we were heartened when we read in your Annual Report that you intended to do something about your limitations in setting up a marketing presence in countries where you have none. The alliance sees this as an essential pre-requisite if patients are to stand any chance of access to the only effective therapy available at present.
You called it a Partnership for Growth.
You say;
“Providing sustainable access to our life-changing medicines is a core mission of Alexion. In select countries, we have established a Partnership for Growth model where a third-party company is best placed to manage our in-country commercial operations. We work with partners who share our vision and values, have a patient-centric and growth mindset, and meet our high standards of quality and compliance. Our partners oversee all aspects of the commercial operations from import and distribution, to market access, and the management of the in-market regulatory and pharmacovigilance requirements of our registered products.”
The alliance has no way of knowing what you have been doing to make this partnership happen and you are certainly not likely to tell us.
But we have seen something appear on your website and that so far “partnerships” now extend to Argentina , Chile, Israel, Central & Eastern Europe, and the Baltics.
Maybe more soon?
So something is beginning to happen and it feels that even this small development offers a glimmer of hope to some aHUS patients in the world that had none.
Today the alliance acknowledges what you have set about doing and the opportunities and challenges it presents.
There is lot to do, but for now there can be more optimism that good is coming….together.
Yours sincerely
aHUS alliance Global Action
