Letter to Honorable Fred Horne, Alberta's Minister of Health

Date:   15 Dec. 2013

Dear Minister Horne - or whoever opens, reads, and screens your mail:

Please read carefully, because replies to early letters by friends indicate that whoever reads these letters does not truly read them but just gets the drift and sends off a standard response. I realize that staff are busy but one-size-fits-all replies to people who write on a matter of life-and-death undermine your credibility. See NOTE instances below.

My husband Peter was recently diagnosed with idiopathic pulmonary fibrosis (IPF). Since Alberta does not fund the only known drug shown to have an effect, albeit a modest one, EsbrietTM (pirfenidone), I asked friends and colleagues to write you, Premier Redford, and their MLAs, asking that Canada’s richest province fund EsbrietTM as the UK and many European countries do.

  • NOTE: I do not have IPF.

Even though some writers explicitly specified they were writing on behalf of a friend with IPF, all received the identical form letter, aka boiler plate, in response - albeit a well crafted, comprehensive boiler plate - that assumed the patient had written. The reply also ignored several other points made in the letters, including the fact that writers knew the Canadian Drug Expert Committee (CDEC) had recommended not publicly funding EsbrietTM. To us, this means Peter will likely die sooner than he otherwise might. To you, it’s simply a cost saving.

  • NOTE: I know CDEC recommended against funding EsbrietTM.

I understand the need for boiler plate responses but it takes only a few minutes to adjust the wording to reflect that someone actually reads such letters, especially those that involve life-and-death.

Since Peter was diagnosed, I have written 4 blogs on the IPF and the non-funding of EsbrietTM.

All 4 blogs are available here at 'Across the Universe': http://canuckontherun.blogspot.ca/

Added for this web version - Musings on idiopathic pulmonary fibrosis - individual blogs:

The blogs indicate that I am well aware of the CDEC’s decision, as well as the UK's National Institute for Health and Care Excellence (NICE) study, which approved public funding this April. The blogs analyse both reports in detail.

  • NOTE: I’ve read CDEC (5 pp.) and NICE (64 pp.) recommendations, indeed many times. My guess is that you and Premier Redford have not.

We are seniors whose insurance will not pay for EsbrietTM.

  • NOTE: Peter’s lung specialist is applying to the STEDT program on his behalf. We understand that no IPF patient has yet received funding for EsbrietTM.

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?

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?

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

Thank you for reading and answering my questions. Please DO NOT send the usual form letter.

Sincerely,

Pat Letendre

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