We have considerable sympathy for the people involved. We have had a haematological condition for around 25 years that will ultimately lead to our demise when it either morphs to a form of leukaemia or turns our bone marrow into concrete. Currently, it causes us few problems, and we'll cross the more serious bridge as and when necessary. On a day-to-day basis however, it sounds significantly less severe than PNH.
This however is clearly an orchestrated campaign to put pressure on Pharmac. The stories haven't broken on the same morning by accident. It's also been reported on 3News, and by other print media. And we found this little gem in the Herald story quite interesting (our emphasis added):
A support group for patients with PNH said Pharmac was taking too long to decide, has begun a lobbying campaign, whose costs are met in part by Alexion.
The group's founder, Auckland artist Daniel Webby, 32 - who almost died from PNH complications - said the funding process did not recognise the rights of rare-disease sufferers.
"They have got a figure they say a life is worth and if it's more than that figure then they deny access.
That Alexion is funding this campaign in New Zealand ought come as no surprise. Who benefits the most if the latest wonder-drug is added to the suite of pharmaceuticals funded by Pharmac? Alexion; that's who.
Dr Peter Moodie, Medical Director of Pharmac was interviewed on Breakfast this morning. He indicated that it was not simply a matter of cost that had prevented Pharmac funding the drug. He stated that Pharmac's Haematology sub-group had asked for more information and evidence of the benefits claimed by the drug's makers. Given the cost, that seems like a very pragmatic step.
A further decision on Pharmac's funding of Soliris is due in February, so it is hardly coincidental that a drug company is ramping up the pressure in advance of that decision. We wonder however about the wisdom of sufferers of PNH going public in a campaign intended to influence public opinion when that campaign is being funded (and in all likelihood driven) by a drug company.
If Soliris is as good as it is claimed to be, and will benefit sufferers of PNH then Pharmac should indeed consider funding it. But as guardians of the public purse with regard to pharmaceuticals, Pharmac is right to be seeking independent evidence of those benefits, and not just relying on the word of the company that will benefit from a favourable decision.
Let's hear both sides of the story, and not just a tug-at-the-heartstrings PR campaign from a vested interest.