This blog is a brief 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.
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.
So now we are delighted to have STEDT funding for Esbriet for about 8 months with these provisos:
- DOC #1: Physician with Esbriet experience is no longer Peter's respirologist.
- DOC #2: 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, after two weeks, there are none. If they occur, we'll rely on Esbriet RN representative.
- LAB TESTS: 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.
- 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'll check with us regularly to monitor adverse effects. And we can always call the toll free number for help at any time.
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