This new blog is to relate what I discovered
- When generous friends wrote Alberta's then Health Minister, Fred Horne asking for Esbriet to be funded for idiopathic pulmonary fibrosis (IPF), including Minister Horne's response when I contacted him directly.
- Interesting tidbits from additional medical research on IPF.
- How physicians vary dramatically in their approach to patients with IPF.
In 2013 my spouse was diagnosed with IPF, a deadly disease with no known cure and a median life expectancy after diagnosis of ~3 years.
Besides the diagnosis, it was a shock to learn that the one known treatment at the time (pirfenidone / Esbriet) was approved for use by Health Canada, but not funded by provincial governments.
I subsequently read many scientific papers on the issue and wrote 4 blogs that examined what it's like to get an IPF diagnosis and why Esbriet is covered by public funding in the UK but not Canada. In brief, reasons include
- The Canadian Drug Expert Committee (CDEC), under the auspices of CADTH, decided that Canada should not fund Esbriet (18 April, 2013).
- The clinical trial results at the time were equivocal and CDEC opted for seeing the glass half empty, no doubt partly because Esbriet is expensive ($40,000 - $50,000/yr). Provinces would prefer not to pay for a drug that slows, but does not cure IPF, a disease affecting mainly the elderly.
- To access the 4 earlier blogs on IPF: 'While my guitar gently weeps' (Musings on idiopathic pulmonary fibrosis).
HOW GOVERNMENT RESPONDS
Many friends kindly wrote the Alberta government, often the Health Minister, Premier, or their MLA, using a variation of the Canadian Pulmonary Fibrosis Foundations's provincial advocacy packages. Regardless of how personalized they made their appeals - including they knew UK but not Canada funded Esbriet - in return all, including me, received what amounted to a government form letter, which totally ignored the content of our letters.
In return I wrote Minister Horne and asked him to cut the crap and reply to 3 simple questions.
To his credit, Fred Horne replied to my direct questions. If I interpret Minister Horne's reply correctly:
- Unless CDEC recommends Esbriet funding, Alberta won't fund it.
- Alberta's expert committee (ECDET) accepts (rubber stamps) CDEC's decisions.
- Forget about Alberta's Short Term Exceptional Drug Therapy (STEDT), unless a drug is approved for public funding by CDEC OR Canada's provinces negotiate what they deem a reasonable cost for Esbriet.
- IPF now a treatable disease (CMAJ)
- Two drugs reduce the progression of IPF
- In 2014 The Journal of the American Medical Association (JAMA) reported that pirfenidone (Esbriet) reduced the relative risk of death or disease progression by 43% compared with placebo.
Dealing with cold hard facts is what we need to plan for the future, whatever that holds.
As we deal with a diagnosis of an incurable disease, idiopathic pulmonary fibrosis, we focus on the glass half full scenario. Every day, every month, every year is a blessing.
Which brings me to an old but fabulous Beach Boys ditty.
- Good vibrations (Love this song)
- Autopsies in acute exacerbation of idiopathic pulmonary fibrosis (Interesting findings. Perhaps they can be of use in treating IPF.)
- Acute exacerbation in idiopathic pulmonary fibrosis.
- Clear diagram (Fig. 1) of the 3 types of disease progression in IPF.