You can't always get what you want (Musings on idiopathic pulmonary fibrosis)

This is the second blog in a series on idiopathic pulmonary fibrosis (IPF).

The  blog's title is based on a Rolling Stones ditty. The blog describes what happens when you try to access the only proven treatment for IPF.

AND THE BEAT GOES ON So, to continue our story....We waited for the call from the Esbriet drug representative and it came in about a week. Not surprising as the company no doubt wanted to get new clients for its expensive drug toute de suite.

The drug company is InterMune and it seems that Esbriet™ is its sole product. 

The Esbriet representative asked about our health care insurance company. Because I was fortunate to work at University of Alberta for 20+ years, unlike many seniors, we were able to transition to a decent health plan upon my retirement. 

We identified ASEBP, the insurance provider for ARTA and said it was highly unlikely ASEBP would pay for Esbriet at a cost of more than $40,000 CDN per year. We had 80% coverage but the maximum per year you could buy for drug coverage was $2000. 

Nonetheless, the Esbriet rep set up a conference call with us and ASEBP, at which time the insurer confirmed the details we'd provided. Bottom line: The 80% coverage was meaningless, given the annual drug maximum as $2K. 

Our lung doc's attempt to hold out hope for Esbriet, something we immediately judged as ludicrous, came F2F with reality. 

The drug company rep said it would continue to work to get Esbriet publicly funded. Indeed, a Calgary physician had applied to get Esbriet funded for a patient with IPF and it was to serve as a test case.

When we reported this to the lung doc, he said we should also be advocates to raise public awareness of idiopathic pulmonary fibrosis. Maybe if government officials  knew about it, and realized it was an issue to citizens, they might ultimately change their minds and fund Esbriet.

SAY WHAT?
At this point the initial shock of Peter being diagnosed with a relatively rare but fatal disease we'd never even heard of began to wear off. Our focus turned to investigating why Esbriet was not paid for in Alberta, Canada's oil rich province, its wealthiest province.

And this is when I started to get mad. For we soon discovered that many places in the world did publicly fund Esbriet. 

Having a scientific background, having taught how to write and interpret scientific papers, and having written a book on the topic, I carefully read the reports of  expert panels in different nations with interest.

The Canadian Drug Expert Committee (CDEC), under the auspices of CADTH, decided that Canada should not fund Esbriet. 

But in a report published at the same time the UK's prestigious NICE recommended public funding of Esbriet. NICE assessed that Esbriet provided a modest by significant improvement in IPF and was cost effective according NHS criteria. 

And NICE recommended treatment with pirfenidone be discontinued if there is evidence of disease progression (a decline in per cent predicted FVC of 10% or more within any 12 months). So if it doesn't work for an individual, stop it. Seems fair.

Moreover, it turned out that, besides the UK, many countries did publicly fund Esbriet, including

• Belgium
• Denmark
• Finland
• France
• Germany 
• Iceland
• Italy
• Sweden

So.... why did Canada's experts nix public funding of Esbriet? Are Canada's experts so much smarter than those in the UK and other European countries?

No doubt Canada's cash-strapped provincial governments were delighted not to fund Esbriet. Never mind the mega-bucks they spend on cancer and drugs for other diseases that yield minimal or no results. 

Did politicos like Alberta's Minister of Health Fred Horne and Premier Alison Redford have a clue about the suffering such a decision caused? I doubt it. 

DECISION TIME
So, what to do? 

• Advocate, as the lung doc said, by writing letters to government reps, even though we suspect it's like pissing in the breeze? Ask pals to do so?
• Lie down and give up? After all, if Canadian experts say Esbriet has no value, regardless of what UK and other European experts conclude, how can mere mortals dissent?
• Mount a broad offensive that's hard to ignore because it's realistic, heartfelt, and on the money?

The next blog will reveal what we decided. But we suspect you already know.

FOR FUN

• You can't always get what you want (Rolling Stones, 1969)

As always, comments are most welcome.