Updated: 18 Feb. 2015
This blog is a follow-up to Good vibrations (Musings on new research on idiopathic pulmonary fibrosis) - initially posted 1 Sept. 2014 and updated 27 Dec. 2014 - in which I discussed how physicians vary in their approaches to patients with idiopathic pulmonary fibrosis (IPF) and the drug pirfenidone (EsbrietTM).
- To access the 4 earlier blogs on IPF: 'While my guitar gently weeps' (Musings on idiopathic pulmonary fibrosis)
To our surprise in early Dec. 2014 we were notified by a representative of the company that makes Esbriet (Intermune/Roche) that Peter had been funded by Alberta's Short Term Exceptional Drug Therapy (STEDT) program to receive Esbriet.
NOTE: We were not notified by a physician but by the manufacturer's rep, an RN. She told us the drug would be available at 3 locations, one of which was the UAH Rexall pharmacy, about 2 blocks from us. She gave us their phone number so that we could confirm when the Esbriet could be picked up. Maybe it was because the physician that got the funding is no longer Peter's respirologist, since he moved to a nearby city and we got a new doc.
BACKGROUND
Much earlier our first respirologist had applied to STEDT on Peter's behalf. But Alberta's then Minister of Health, Fred Horne, indicated to forget STEDT unless CDEC OR Canada's provinces negotiated what they deemed a reasonable cost for Esbriet. That made us cynical of ever getting Esbriet. But it turns out there was hope.
QUANDARY
So now we are delighted to have STEDT funding for Esbriet for about 8 months with these provisos:
- DOC #1: The physician with Esbriet experience is no longer Peter's respirologist.
- DOC #2: The new respirologist has no experience with it - few physicians do, given its cost - and will be on leave beginning in the next few months.
- SIDE EFFECTS: So far, there are none that warrant stopping the drug. Nausea, dizziness, and extreme fatigue occur but Peter's okay with them so far.
- LAB TESTS: The Esbriet RN also told us to get baseline laboratory results for ALT, AST, and bilirubin monthly for 6 months, then quarterly, since Esbriet may affect the liver. Our family doctor kindly wrote a standing lab request.
DOCTOR vs MANUFACTURER'S REP
About Esbriet's significant side effects, in the absence of physician involvement, the manufacturer's representative helped. Suspect this is because the manufacturer doesn't want patients to discontinue the drug because of adverse side effects. She gave advice on how to minimize a key side effect, gastrointestinal issues. For example:
- Take pills ~5 hrs apart since Esbriet's half-life is 2 1/2 hrs.
- Increase dosage slowly and cut back if side effects are onerous.
- She said she'd check with us later about adverse effects. And we can always call the toll free number for help at any time.
BOTTOM LINES
I admit we're an outlier, having changed physicians. But even if we still had the initial respirologist who applied for Esbriet funding under STEDT, would the situation be similar? Who knows?
It makes sense that manufacturer's representatives want to ensure Esbriet helps patients and is not discontinued due to side effects.
Alberta's healthcare system is wonderful in many ways and staffed with dedicated health professionals. But I also know from helping many seniors that to claim AHS is patient-centred is not a reality.
Care is more cost-centred because it has to be, given the Alberta government's choice of priorities and taxation policies, e.g., tax breaks to oil companies, a flat tax that favours the wealthy, and no sales tax like other Canadian provinces. All more acute now that oil prices have tanked.
Care is more cost-centred because it has to be, given the Alberta government's choice of priorities and taxation policies, e.g., tax breaks to oil companies, a flat tax that favours the wealthy, and no sales tax like other Canadian provinces. All more acute now that oil prices have tanked.
Sometimes doctor visits are similar to a factory assembly line. After 'x' minutes, you're given a clue to exit. Some docs specify you can discuss only 'x" issues. While I understand where they're coming from, and dig they need to earn a living and pay for their office's overhead, it's hardly patient-centred care.
I look forward to learning how Peter's new respirologist manages his care using Esbriet on what will be his final journey. To be continued...
FOR FUN
Love this song and in some ways it resonates with this blog's theme.
Love this song and in some ways it resonates with this blog's theme.
- Sweet Dreams (Are Made of This) by Annie Lennox, Live 8, Hyde Park, London, 2005
As always, comments are most welcome.
