Reply from Honorable Fred Horne, Alberta's Minister of Health

Date:   18 March. 2014

On Dec. 15, 2013 I wrote Alberta's Health Minster Fred Horne regarding my spouse, who has idiopathic pulmonary fibrosis (IPF) and also tweeted about it.

Our friends had written to the Minister on my spouse's behalf and all received an identical form letter, aka boiler plate, in response - albeit a well crafted, comprehensive boiler plate - that assumed the patient had written.

The replies also ignored several other key points made in the letters, including the fact that the writers knew the Canadian Drug Expert Committee (CDEC) had recommended against public funding for Esbriet.

In my letter to Minister Horne I asked him to 'cut the B.S.' and respond directly to 3 questions.

**Today in a letter dated 12 Mar. 2014 I received Minister Horne's reply. And guess what? He did answer forthrightly and graciously acknowledged our personal circumstances.

QUESTIONS

Please ‘cut the crap’ (sorry for being direct, but my spouse’s remaining time on planet is at stake) and reply as honestly as you can, given political realities, to these questions:

1. How likely is it that Alberta will fund EsbrietTM without CDEC or Alberta's ’Expert Committee’ recommending it?

Answer: Without expert recommendations that support coverage, it is unlikely Alberta will provide public funding at this time.

2. Where can I access Alberta's Expert Committee on Drug Evaluation and Therapeutics report on EsbrietTM? Or does it more or less rubber stamp the CDEC decision?

Answer: Because CDEC recommended not to list the drug, ECDET decided to support CDEC's advice. There is no ECDET report.

3. What are key considerations for who gets funding under Alberta’s Short Term Exceptional Drug Therapy (STEDT) program? I’m trying to identify if a 68 year old with IPF has even a chance of qualifying and under which circumstances.

Answer: Alberta is presently considering the possibility of a product listing agreement with the manufacturers of Esbriet.
One of the parameters of the STEDT program is that no coverage can be provided when a drug is under review via pan-Canadian processes.

BOTTOM LINES
If I interpret Minister Horne's reply correctly:

  1. Unless CDEC recommends Esbriet funding, Alberta won't fund it.

  2. Alberta's expert committee (ECDET) accepts (rubber stamps) CDEC's decisions.

  3. Forget about STEDT unless a drug is approved for public funding by CDEC OR Canada's provinces negotiate what they deem a reasonable cost for Esbriet.

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Twitter Account used for IPF and Esbreit: Grumbling Onions

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