Sweet Dreams (Musings on funding of Esbriet for IPF)

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 (Esbriet^TM).

• To access the 4 earlier blogs on IPF: 'While my guitar gently weeps' (Musings on idiopathic pulmonary fibrosis)

The blog's title derives from one of the Eurythmics' biggest hits, often sung by Annie Lennox on her solo tours.

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:

1. DOC #1: The physician with Esbriet experience is no longer Peter's respirologist. 
2. 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. 
3. 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. 
4. 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.

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.

• Sweet Dreams (Are Made of This) by Annie Lennox, Live 8, Hyde Park, London, 2005 

As always, comments are most welcome. 

Searching for a heart of gold (Musings on Alberta's health system)

Also see Idiopathic Pulmonary Fibrosis blogs 
Updated: 1 Oct. 2014

I decided to write a short blog, one in a series, on Alberta's healthcare system. Canada's health system is one of best in world yet has many problems. I treasure it but don't want to ignore reality.

The blog's title comes from a song by Canada's Neil Young.

Trying to count up all times I've visited Edmonton Emergency Rooms (ERs) in past two years. At least 8 times, driving seniors in their 90s (because they want to go to UAH in Edmonton, across the street, not a far-way hospital that requires $40+ taxi fares), or accompanying them in ambulances.

I've also visited seniors who were admitted to hospitals, or had to attend clinics, dozens of times in past two years. Plus saw doctors for myself or family dozens of times.

Random Impressions

1. Alberta's health professionals are exemplary. Most cope with awful working conditions, are overworked, yet still care, treat patients with understanding and kindness. Truly heroes worth of admiration.

2. A few RNs let it get to them and are overtly surly to patients who have the audacity to ring nursing station buzzers and are hostile to patients and visitors who dare ask questions. I call these RNs angry pitbulls who probably should leave the profession. No doubt they are overworked but it does not excuse bad behaviour.

3. A few health workers seem to have little or no sympathy for the elderly ('bed blockers') and others who belong to any underclass. Is it because physicians and RNs earn good wages, live the good life, have not experienced hard times, and had a privileged childhood with little experience with the down-and-out and human frailty?

4. EMS staff have told me that some colleagues burn out and leave the profession because they cannot relate to the elderly or the homeless.

5. I've overheard young ER nurses and doctors joke negatively about elderly patients. A coping mechanism or they're callous youth? 

6. Physicians seldom listen to patients. They're immediately on office computers accessing results and what patients say is so much background noise.

In the past, doctors used to at least read a patient's chart, stuck in a slot on the outside of the cubicle, before entering. Nowadays, they enter,ask how you are (ignore whatever you say - it's usually not 'Fine' or why the heck are you there?), immediately log-in to computer, scan test results and recent history, while patients sit quietly waiting to be acknowledged as existing.

For routine followup visits, I've had physicians ask me,'How are you? What can I do for you today?' I wanted to reply: 'Your booked this appointment. You tell me.' But instead I generously say, 'I'm here for a routine follow-up for ...', which lets them off the hook.

7. Sometimes as a patient, when doctors begin a canned spiel about what they think is your issue, you feel like shouting, "Shut the f*ck up and listen" but you never do.

I've never heard a physician ask any of , "Am I going too fast? Do you understand what I'm saying?" From my life as a teacher of adults, it's standard practice to ask learners what there background is and if they know much about "x" so as to determine how much to explain. Because doctors never do the equivalent, patients with a health care background, e.g., medical laboratory technologist, may have to suffer through a hilarious description of a laboratory test.

8. Many patients visit their physicians unprepared, without a list of key questions that need answering or concerns that need to be assuaged. This puts doctors at a disadvantage as too many random concerns dilute a patient's true needs.

9. Some physicians talk too fast, use too many medical terms, and are oblivious to patients as real people struggling to understand. They don't seem to comprehend that lay people will often be focussed on what the doctor said several sentences ago and new information is not being heard, let alone processed.

Communication is not simple. Between SENDER---> (encodes MESSAGE) and RECEIVER (decodes message to obtain meaning) much background NOISE can interfere, not the least of which are the sender's language and speed of talking and the receiver's apprehension and fear.

10. What's taught in medical schools about patient-centred care is so much bullsh*t. Once physicians set up practice, it's all about processing patients on an assembly line for 'fee for service'.

Patients can't even get long-standing prescriptions for lifelong conditions renewed without visiting doctors. Pharmacies try their best to help patients but it's strictly ka-ching, ka-ching for doctors to make their practice viable (salary, overhead costs of maintaining an office and staff, etc.)

11. I've observed senior doctors humiliate student physicians (interns, residents). It's a widespread problem, one of medicine's dirty little secrets.

12. Onus is on patients to come with list of key concerns and press physicians for answers. Few can do this, especially the elderly. Often old folks meander all over the place instead of clearly stating their serious health issues.

Meanwhile MD and RN eyes glaze over and they begin to use terms like 'dearie' and 'sweetie'.

And some doctors don't really see oldsters as patients, more as inconveniences they cannot help. No one wants to feel powerless, least of all physicians with god-complexes.

More to come...
FOR FUN
Hope you enjoy this 1972 ditty by Canada's Neil Young.

• Heart of gold 

As always the views are mine alone and comments are most welcome.