Thursday, January 24, 2013

Let's hear both sides of the story

The Herald leads with a health story this morning. And on TVNZ's Breakfast programme, the big story of the morning has been a sufferer of the same condition lambasting Pharmac for its delay in approving a drug which might cost up to $500,000 per patient per year.

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.


Anonymous said...

Well put. Let's also not forget there are around 30 patients nationally with PNH, at $500,000 per year per patient for the remainder of their life (which in some cases may approach normal life expectancy) that is $150 million for only ten years of treatment! Granted, not all patients with PNH will need this drug, but think about the cumulative affect when newly diagnosed patients are taken into account.... Pharmac is there for a reason, to allocate scarce resources in a fair manner. They are using independent advice and waiting for decent evidence. Simply improving quality of life is a poor end point for millions of dollars when in a majority of cases a few cents worth of Prednisone will do the trick. What about other rare diseases? While my sympathy extends to the patient, it doesn't extend much further. This smacks of drug company promotion.

PNH Dad said...

Must admit I am confused by the failure to acknowledge existing independent studies on the long-term treatment of PNH with Eculizumab (Soliris). These studies have demonstrated an expected life-expectancy of 10 years without Soliris to a normal life span with Soliris. A quick Google search and these studies are easily revealed. There is no argument, however, that the costs for Soliris are extraordinarily high and Pharmac is entrusted to allocate scarce resources. To imply that prednisone will "do the trick" in lieu of Soliris for the majority of cases, however, is ignorant and irresponsible. PNH is a complex and devastating disease. As a society, we must make very tough choices. There are certainly a number of diseases in which the prognosis is terminal regardless of how much money is thrown at it. PNH, with the development of Soliris, does NOT fall under this category. These people are no longer destined to suffer and die prematurely. Do we allow people to die when we they can be saved? Different people will have different answers to this question. Hopefully you will never have to bear the pain of your child or other loved-one suffering with this disease.