An open letter to Alexion for 2018

1 January 2018

Dear Alexion
As you know aHUS is a life threatening and debilitating condition.
You have the only treatment currently approved that can effectively stop the disease.
From when Alexion was founded twenty five years ago,  on the principle of discovering treatments to address illnesses of the innate immune system Complement, you have gravitated towards treatments for those with rare diseases. You, with investors trusting you and supporting you, developed eculizumab.
The problem you found was how it should be used.
After a trial of the more common ailment rheumatoid athritis  proved fruitless, you snatched victory from the jaws of defeat, when a clinician suggested that eculizumab might be beneficial to PNH patients. It was.
Another said it could be beneficial for treating aHUS. It was.
These things take time and money to get to market, but ,eventually, eculizumab did. Thousands of patients have benefited. But these are only a minor fraction of those who could benefit.
Financially Alexion has been successful,  although the past few years have yet again been problematical.
For those who benefit it is important that your business is sustainable and profitable. Whether those beneficiaries  are financial backers, employees or the patients.
Setting a price for your product ,which gained a notorious reputation within the Pharmaceutical market has made access to it difficult. The media has had too many stories of stand offs between you and healthcare funders, with patients in the middle suffering
You say yourself that the price of the drug is not set by the cost it takes to produce, that  it is only a small element. Much  costlier is distributing it and running a business just to do that. You are also still putting money into research. Not just to continue to the development of  eculizumab, and finding  other safe and effective applications for it; but also to discover other treatments for other rare diseases whose patients may not benefit for many years to come.
Alexion does  make a profit, and you pay tax on it; although like many global companies you have ways of reducing that by moving money around the company. If you had not your tax bill would be many times what it is.
You have  embarked on a reorganisation to reduce the cost of running a business which distributes pharmaceutical products.
You have also  been lucky to extend the patent protection of eculizumab until 2027 .
Alexion’s market is not saturated and most PNH aHUS  as well as others with TMAs , which eculizumab can benefit too, are not accessing the drug. So sales growth is possible and you seek it.
All of which is understandable.
But is it understandable to the family of a 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.
Yours faithfully
aHUS alliance Global Action.

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