I posted this on Facebook earlier today, after I left the pharmacy. After a few requests to make it public so friends could share, I did—and it seemed reasonable, 12 shares, 45 reactions and 59 comments later—many shocked that this happens in Canada—to post it on my blog, too.

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Do you know why Canada needs true national Pharmacare?
I do every day, but especially on days like today where I leave $642.01 behind at the pharmacy counter just to function for a month, for just 4 of my 7 meds. 

Did you know that despite being self employed and having two part time jobs, I can’t get insurance in Canada that covers medication for my preexisting conditions? Okay, actually I can, but it would cover $500 in medication: less than one tenth of my annual medication costs. Less than I just paid today. 

  • I can survive without Vyvanse for my severe ADHD, but I can’t thrive. That’s the expensive one, and it’s not an enhancer, just a sort-of equalizer. 
  • I require four different inhalers to manage my moderate-to-severe asthma. (One of those I’m on right now isn’t covered for asthma under Manitoba Pharmacare, so I pay out of pocket. Despite how well it works, I’ll switch it for another drug in not-winter to save money.) This is to BREATHE, which is not exactly optional.
  • Barring other radical intervention for my fibroids, I’ll need to stay on oral contraceptives for another several decades–and this is the only drug I may have a forseeable end date on. Despite my persistence, this is not optional. (And also, even if I were using them for contraception, does the province not realize paying for the pill for a decade is cheaper than probably just getting a baby born? Never mind making them a good human?)
  • Oh, and on top of the asthma medicine, I have allergic rhinitis, for which I consider the drugs “the optional ones”, but only because my sinuses aren’t super impairing–note, my doctors disagree with the optional-ness of daily nasal steroids, and support the use of singulair as an add on. 

I am productive and mostly healthy because I have these medicines. I’m lucky I can afford the deductible which is thrown at people like me in a lump sum at the beginning of the fiscal year. I will have another pharmacy trip or two where I leave a not-insignificant amount of money behind. Just because I can afford this now–with minimal expenses, living with my parents–doesn’t mean I’ll always be able to. 

Am I happy to have some provincial coverage? Yes. 
Do we need to do better? Unquestionably yes.

We need this for every person who needs to choose between food and medicine. For every person who cant financially handle a $500 emergency—40% of Canadians. For the parents who forgo their meds to let their kids play soccer–and for the ones who can’t play soccer because their parents need medicine. For every would be enterpreneur who could change the world but is stuck at a job because of benefits.

We need this to be a better Canada–that place where healthcare is a right because we take care of each other and we take pride in that. Except we stopped short, leaving patients who are still patients after they leave the doctors office often fighting to survive. We need more than “gap filling” solutions, we need Pharmacare for everyone, all the time. 

Canada, we can do better.

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Do you have a story about inadequate access to medication or medication coverage in Canada? Please SHARE IT so others know why this issue matters. One way you can share your story is to reach out to my friend Bill at FacesOfPharmacare.ca. You can also send your story to your Member of Parliament (find them here), and most importantly, VOTE in October for a candidate who supports a true national Pharmacare strategy for all Canadians.

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I got an e-mail Monday about a secret flu shot clinic for employees of my health region, including Disability Support Providers (me). It was a ten minute walk from my house (where I got led into an Authorized Personnel Only room), convenient as I am also high risk because of my asthma. Also it is basically next door to 7-Eleven. And a lovely morning for a walk.

It is the first day of Fall, the people of the internet (aka my friends on Facebook) are telling me. It’s kind of hard to believe given I got back from beautiful California less than a week ago where it feels like summer and is generally pretty. Alas, my favourite season—Fall—is upon us, and I engaged in an (iced) pumpkin spice chai at Vancouver airport at probably ten-something PM on Monday night.  (Pumpkin spice chai is amazing. I was getting ehhh about normal pumpkin spice lattes, honestly, and I am thrilled by pumpkin spice chai lattes.)

And is obligatory on the first day of Fall, listening to Come Winter by Daphne Loves Derby (on repeat), as has been my general habit since about 2014, if not earlier.

If you’ve got Apple Music, here’s a link to a slightly different EP version that I’m enjoying.

Fall is my favourite season not just because of pumpkin spice. I enjoy the cooler weather, the jeans-and-hoodies combo, the foray into toque-season (without the brutal cold associated with toque season), the fact that Goalball starts soon (and archery!), the fact that my lungs generally like Fall, and the fact that I get back to a bit more solid of a routine—for the lack of routine I generally have, even in the non-Summer months. Despite some of the worst moments of my life happening in the beginning portion of Fall (looking at you, 2013 and 2014, and even 2016), these have all come with resolution attached—“part of a change for better” (I Swear This Place is Haunted, A Skylit Drive)—or at least a piece of resolution that produced a change I can, at least now, feel positively about.

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This year, again, fresh off a return from Stanford Medicine X, and subsequent #MedXHangover and ongoing recovery, I feel that sense of renewal, that sense of recharged passion and purpose for creating change, both in myself and in the world. It doesn’t hurt that I’ve got some other advocacy-related travel opportunities in the works (travel may exhaust people but it energizes me), or that I met so many amazing people last weekend at MedX. It doesn’t hurt that the people I met and the experience I had at IDEO for the Medicine X – IDEO Design Challenge re-inspired me to think differently, creatively, in terms of “How Might We”s and innovation and possibility and better. No, spending a glorious two days with one of my favourite people on earth, Stephen, in Santa Cruz to relax and recharge even prior to embarking on the Medicine X whirlwind of inspiration, that didn’t hurt either. Meeting a dozen Canadians at MedX reminded me that things are possible, change is possible, even in our slow-moving, lack-of-progress medical system (although I maintain Toronto is more receptive to change than Winnipeg/Manitoba/our ridiculous healthcare-killing Conservative Government is). I am ready to do more. Batteries recharged.

I am re-energized. Re-inspired. Thanks both to California, to the MedX Family, to friends, and to the crispness of Fall.

Well, I’m sure another pumpkin spice chai latte wouldn’t hurt, either.

It’s been months, literally months since I’ve written here. Probably because I’m writing other places on the internet. So here I am, wrapping up May after I haven’t written since January 30th. I have half written posts around on adventures since then, and words that have been published elsewhere (aka asthma.net). And some things that’ll never see the internet, shitty circumstances where I was somewhat stabbed in the back where I’d trusted someone and then had to clean up a mess they made–which was even more mentally time consuming than physically time consuming (if that’s even a way to explain time, in a physical sense). 

March, April, May even have involved airplanes and time invested and spent and wasted and given. 

I’ve gotten really sucked into podcasts which take more time than I realize–and I am smarter if not necessarily better for it. I’m thinking of going back to school and taking, no word of a lie, political science, even though prior to six or so months ago I had no interest in politics although I’ve been strong on voting since I could vote. At the start of May I was in Ottawa for World Asthma Day, in April, I was in Palo Alto to present at Stanford Medicine X | ED, and in March, I was in St Louis, Chicago, Washington DC, Philadelphia and Toronto on a whirlwind adventure that happened t settle around two conferences.  

Here are some (a lot, but only a sample) pictures.

Flickr Album Gallery Powered By: Weblizar

[Also I can’t figure out what I’m doing so to see the flickr album if it doesn’t load, click here.]

Not to say there wasn’t more.

There surely was.

But without writing everything down–whether here or in a journal–I’m living through Facebook and instagram and Twitter and a camera, and being in the moment, but maybe not translating that into reconstructable memories as readily. And maybe that’s okay but I think maybe I want that to change too. 

So here I am again.
Back.
Hopefully more intentionally. (Therapy.)

Because I’m getting closer–checking my Fitbit, logging nutrition with myfitnesspal (for five days now), and I actually rode the stationary bike the other day.
Now I’m writing.
Next is meditation.

Getting back to who I really am. And some (small bit of) routine.

While I often update my disclosures page without a whole post about it, this one needs attention called to it. Because, transparency.

Last week, I signed a contract with AstraZeneca Global, to participate in the Global Asthma Patient Partnership Program, after engaging in an initial webinar to get a feel for the experience, and receiving an invitation to join the Program for a year. I will receive financial compensation for my involvement on projects that I can opt-in-and-out of on a project by project basis. The initial webinar was also compensated by AstraZeneca.

I had hesitations. I thought long and hard. I asked questions about the contract. I deliberated alongside others in the same position; others aware of and sharing in the concerns I have about being involved as a patient with a pharmaceutical company. (You can also see this post from 2015 about going on a trip to Denver to learn about a GSK sponsored school asthma program on GSK’s tab, and my thoughts.)

AstraZeneca and its products are no longer a player in my own asthma management (I do have a Turdoza inhaler at home, although that’s a long story and is not actually one of my meds). I switched out Pulmicort for Qvar and then Symbicort for Zenhale close to five years ago. Had I been on AstraZeneca meds, this would actually be much harder, if that even makes sense, as their product(s) would be the ones keeping me healthy.

Do I think I am “partnering” with AstraZeneca? 

No, not exactly—more accurately I’d call it consulting. AstraZeneca can take or leave my feedback. I receive compensation either way. Just like I do and will write honestly, I’ll give them feedback honestly, too. Compensation won’t change that (unlike physician prescribing practices—see: Who Pays For the Pizza). I won’t be switching my meds out anytime soon. It’s likely that I won’t discuss AstraZeneca at all, which has been the case with GSK (considering I even get embargoed press releases since Denver).

Learn more about the AZ Patient Partnership Program by checking out the FAQ

Know that this is a trial run for me, too. I’m still getting a feel for this and how exactly I want to move forward. I can terminate my agreement at any time, but I am hoping that this is a positive experience—while it probably (almost certainly) won’t change how I see pharma, hopefully it changes how AstraZeneca sees asthma patients, which is maybe even more important.

Have questions? I cannot disclose anything discussed in the projects I consult on with AstraZeneca. (Nor, you know, their products/drugs, because I am not a doctor.) Otherwise, please let me know if you have questions or concerns and I will do my absolute best to address them.

Disclosure: As I have signed a contract with AstraZeneca, I provided this post for review by the Patient Engagement Director prior to publication (the only edits requested and made were referring to AstraZeneca by its full name). AstraZeneca did not ask me to write this post (rather, the opposite per the contract, although the Patient Engagement Director was encouraging). Transparency, however, is extremely important to me. I want you to know these things, so that we—as patients—can be more critical.