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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.
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.
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.
Airports and airplanes are among my favourite things. Once those six-flights-in-six-weeks culminate, if someone wants to fly me away again, I’m down.
YWG -> YYZ -> YWG -> YYZ -> YWG -> DEN.
[…Denver yet to happen. Next Monday.]
First was Senior Goalball Nationals April 17-19th. We didn’t win any games, but, I heard from another coach that he hadn’t seen Manitoba score seven goals in a game for about seven years, so, I feel okay about that! Plus Steve, Gerry and I got free stuff at the new Yorkdale Shopping Centre Starbucks (they’re left of me in the picture, #1 and #9, respectively), met Dia for coffee, went to the CN Tower, Purdy’s chocolate, and the Lego Store!
(Thanks to Jamie for snapping this picture when she and Larry came out to check out the games!)
Then less than two weeks after I’d returned, I was back on a 5:15 flight out to Toronto last Sunday morning. The official purpose of the trip was to attend an all-day meeting of the National Asthma Patient Alliance Executive Committee on Monday, the Clearing the Air Conference Gala Monday evening, and the Asthma Society of Canada’s 2nd annual World Asthma Day conference on Tuesday—World Asthma Day.
Hello, Toronto! (Again!)
My flight arrived 25 minutes early—it was really only the beginning of Transit Nirvana: I checked my phone upon arriving at the Terminal 3 bus stop, and the bus would be there in 3 minutes. I got off the bus at Kipling Station and after a moment of confusion with an out-of-order track, I was on my way to Jane. From there, I’d planned to walk to Humbercrest United Church, but, because of Transit Nirvana, the appropriate bus was sitting outside, so, a transfer it was. Beautiful.
This picture was my “I’m almost there!!!” text to Jess (below!), who I connected with on Twitter a few years ago. Getting in to Toronto at 8:30 AM on a Sunday meant it only made sense to go to church (…for the first time in two years :]).
(Getting into Toronto at 8:30 also meant that I was awake at 3:06 AM, thus the evident tiredness here!
Selfie credit to Jessica!)
Listening to the choir warm up before the service! I may have also had Live’s “The Distance” going through my head here:
i’ve been to pretty buildings / all in search of You / i have lit all the candles, sat in all the pews
[…] oh, the distance makes me uncomfortable / guess it’s natural to feel this way / let’s hold out for something sweeter: spread these wings and fly.
I’d discovered while exploring where the church was that my grandma’s friend Alice lived nearby. After the service (interestingly, Jess spoke on John 15, which we’d explored one weekend at a youth leader’s retreat a few years ago—read: five years ago. How did THAT happen?), I met up with Alice at a coffee shop nearby for a couple of hours.
(Got this picture in the mail from Alice 05/15!)
I reconvened with Jess after her meetings finished to go for lunch and do a drive through High Park to see if the cherry blossoms were out yet. The park was busy, but I felt super lucky to see the cherry blossoms—a few days on either side and I may not have been able to!)
Jess dropped me off at a subway station, and while I almost got on the train going in the wrong direction (despite her telling me to go the opposite way!), I made another Transit Nirvana-esque transfer at Bloor-Yonge Station to college… and then proceeded to walk past the hotel and almost back to the station I’d transferred at. Hey, I figure I’d done pretty good up till that point—thanks Google Maps!
Shortly after arriving at the Courtyard Marriott downtown, I texted Stacey, a NAPA executive member from BC who had also arrived on Sunday. We connected in the lobby, went to the Second Cup in the hotel, and then went on a walk around downtown, including finding a Loblaw grocery store, and then returning to the Second Cup to buy dinner.
(We got lost a bit, but that just means more Fitbit steps!)
The sole purpose of my ice bucket was to house my berries—my chocolate milk couldn’t even stay in there so I just hoped it had enough preservatives in it ;). I was mostly unimpressed that Gerry wasn’t there to get ice for me ;).
I woke up at 7:29 Eastern (6:29 Central—clearly I was tired as I went to bed at what my body would have interpreted as 10:06 PM, and I crashed into sleep rapidly according to SleepCycle), and got ready for the day. Did I mention the weird layout of my room? Yeah.)
I went on a journey for a plain collared shirt in white or black several days before going to Toronto. I found one such shirt and the small was too big, so I had to resort to getting a Winnipeg Jets golf shirt. Represent! I got business casual down ;).
I got a text from Sue saying she had arrived at the hotel after an early flight from New Brunswick, and headed down to the Second Cup to meet her before my meeting with Erika and Vibhas. I am also that person who gave everyone the keys to my hotel room—Dia actually went up there to work, even! At one point, Erika and Dia had both of my keys and I had none, which was kind of amusing. Erika, Vibhas and I discussed the Asthma in Schools subcommittee meeting later that afternoon, and I thought it was awesome that we had some input from Sue as well, as she was taking part in the Strategic Planning discussion, so my hope was that she could use some of our previous struggles to help influence that discussion!
We started our National Asthma Patient Alliance Executive meeting at 11:30. Dia, as Chair, was keeping things rolling as you can see below.
From this point, I think the best way I can summarize the bulk of the asthma/National Asthma Patient Alliance/advocacy/World Asthma Day related content is through tweets—real talk in “real time”. I’ve embedded a selection [a hefty selection!] below, and then will return with added commentary (I’ve embedded some commentary through Storify, also!)
(Be sure to click through on “Read next page” to see the last few gala posts, and tweets from the Clearing the Air summit!)
I set up #ClearAir15 on Symplur to give us a sense of how things were going Twitter-wise (no, Noah, I did not just set that up to bug you about my insane amount of tweeting, although that was a nice side-bonus—ADHD lends itself well to live-tweeting mostly), and because I like graphs and things (so does Rob, I learned). I am not really sure whether I expected more or fewer people tweeting (I am, after all, MedX biased, which is the craziest tweeting conference evah).
Seems about right.
Sorry, Noah (tweeting as @AsthmaSociety). Final stats say Erika and I out-tweeted you :]. Putting the e in ePatients.
(Of course, the ASC account came out ahead in Top 10 by Impressions. Also, I am glad to see more people tweeting at both Glen Murray and the Asthma Society than me, because that only makes sense.)
My favourite session of the day was Dr. Sarah Henderson’s breakout session on extreme summers and respiratory health. What I found most interesting about this, outside of the graph included above that compared Ventolin dispensed to levels of specific particulate matter in the air (mind-blowing to see that they were able to very much trend peaks in Ventolin dispenses at British Columbia pharmacies [and thus, likely, use of rescue medicine] at the same time as particulate matter from forest fire smoke), and how extreme heat + allergens + forest fires [particulate matter] = higher incidence of respiratory issues—I will say the most interesting part to me was not all of the above, but that Dr. Henderson actually dragged illicit drug use into the frame, noting that not only is use of street drugs a potential cause of death, but the way cocaine use alters the body’s response to heat means that cocaine users are even more likely to die during extreme heat than they might be in the same circumstances but in cooler weather. (Oh, I also got to introduce Sarah AND MENTION PENGUINS. Dr. Henderson is a cool lady.)
My Twitter slowdown came when money and politics were being discussed. I was not only lost, but disappointed when instead of using the policy discussion for good, it came to a political showdown that did not just highlight the good, it began slamming the Tories—yes, I’m really left-wing myself, but a health conference is certainly not the place to alienate those who may not be.
And that is when Jess and I chose to take selfies instead of repeatedly slamming our heads into the table whilst trying not to breathe in too deeply around the woman who decided it was a good idea to drown herself in perfume before attending an asthma event? (Okay, maybe I was irritated by more than one force…). Anyways, moving back to the positives.
The final session of the day was a patient panel, including two NAPA executive members, Erika and Chantale. This discussion generated a lot of good questions, and I really just wished that the patient perspective was not included last. I think it was a good way to finish the conference, however, I think the patient perspective needed to be woven in throughout the day, not just at the end (by which point many attendees had left, as well). Once again, maybe a “MedicineX sets a precedent for me” thing, but, if we ever hope to see a world where patients are truly engaged in a conversation, and not just—whether legitimately or unintentionally seen as—an afterthought, this needs to happen: we may all be an n=1, but we are why change needs to happen.
Jess and I following the conference—photo credit to Rob.
Rob and I (Rob actually recruited me to the exec when he was working for the ASC.
We tried to recreate a picture from Quebec in 2012, when we were both the students taking all the pens from the conference room right before he started law school. And now I’ve also graduated and he is an almost-lawyer!)
Photo credit to Jess.
But, until then, until the change does happen and through that process, I’ll have many amazing friends to share the journey with. Before she pointed me in the direction of a train (look, I only stayed on going the wrong way for one stop!) Jess and I discussed the day over margherita pizzas (thanks, Jess!).
$3.50 iced tea from Pearson and airplane shirt? Check. (After wandering out of the secure area to not-find Sue because I was not allowed in concourse D? Yeah, check.)
…and, of course, looking back with there realization that if we did not recognize that we are the ones who will help guide change being created, if we didn’t have this stupid disease, we wouldn’t have been sitting at the same table in Toronto for a second time in three days digging through all the topics that we did :). The conversation, the people, and the steps towards change—however small—are what matter.
Disclosure: The Asthma Society of Canada, via its funding partners (pharma), covered the cost of airfare, one night of hotel, gala and conference admission, and some meals, for National Asthma Patient Alliance Executive Committee members to attend the NAPA meetings and Clearing the Air conference in Toronto. I was not asked to write this post, nor obligated to provide a positive review (as you can tell, probably).
All tweets cited above as my own are completely that, including mentions of my engagement with both NAPA as present Vice Chair, and the Canadian Severe Asthma Network, as Patient Lead, are based on my own desires to identify [within] these roles/groups. I receive no added benefit in doing so, I just think they’re good people[/things].
I used to do this thing called 12 of 12, where a bunch of people took 12 pictures throughout the day. Well, when Chad (the guy who thought it up) stopped hosting the link roundup, it kind of—to my knowledge, at least—disappeared. The last 12 of 12 I did was August 2013.
A year and a half later… here goes! (It helps that I actually had an interesting day today. Such is the spend-most-of-my-time-at-home life…)
12:03 am | kitchen. We had our kitchen redone earlier this week. This has resulted in my inability to reach many cupboards.
2:47 pm | kitchen. Yesterday I realized that my networking cards have my old Twitter handle on them. I went to a tweetup this evening, and tried to get the same-day type from Stapes, except I can’t find my Visa card so I missed the noon order deadline because the Visa Vanilla website wasn’t allowing me to set up my gift card, and RBC told me my Visa Debit card was too old to activate. So I did not get new networking cards in time.
[With that said, also, no cards were exchanged: it was all about the tweetup.]
5:02 pm | bus. Moovit is the greatest app to ever happen to transit.
5:35 pm | CBC Manitoba. Marcy kicks off the #CBCTweetUpMB event.
5:44 pm | CBC Manitoba.
I met up with Alyson before heading to CBC.
She did a pre-weather selfie with John Sauder from CBC, on the air.
On Sunday, I sat a table in Perkins in Minneapolis with my friends Scott and Heather, engaged in the flow of conversation over grilled cheese sandwiches—the usual flow of topics with a few twists: exercise, coaching (in the life-coaching sense!), and diabetes. In the past, I’ve had conversations with my friend Bethany in which mid-sentence in a Starbucks [or elsewhere] she’s kind of stopped and said “Are you getting this?” to which I just nodded and said “Yep, keep going.”
“It’s just so crazy you know all this stuff about diabetes and you don’t even have it!” She replied.
A few years ago, I found myself surrounded within the Diabetes Online Community [or DOC]. And since then, I’ve learned a lot about what life with diabetes—no matter what type—can look like. Because not everybody with type 1 has the experience as another type 1. Not everyone with type 2 has the same experience as somebody else with type 2. And, mixing elements of both T1 and T2 are those with LADA—or type 1.5, and their stories will look extremely variable, too.
As Scott and Heather discussed Nightscout/CGM in the Cloud (how very smart/techy people with diabetes or caring for people with diabetes have managed to connect their Dexcom continuous glucose monitors through smartphones to upload their glucose data to the cloud, and from there, can load data remotely—ie. a parent can watch their child’s blood sugar levels from their desk while the kid is at school, the data can be streamed to a Pebble smartwatch to allow less-conspicuous access to BG levels, or a variety of other possibilities to allow even more of a safety net than CGM currently provides).
Scott had given me the CGM in the Cloud tour in August (so I arrived at Dana’s DIYPS talk at Medicine-X I was a bit more clued in than I had been previously!), also over grilled cheese, and while I’d heard about the system over Facebook, it was even cooler to see in person as he slid his Dexcom over and handed me his Pebble to see it first-hand. Dexcom has only recently become available in Canada (both standalone and integrated with the Animas Vibe insulin pump), and I shared this with Heather and Scott… along with the slightly amusing fact that I constantly have Animas Vibe ads on the side of my Facebook page because of all of the diabetes talk that goes on within my Facebook feed.
The reason, though, that I have so many friends with diabetes is perhaps because of diabetes, but more because many people with diabetes care about something much larger than their own story: they care about making the story of others better. I joined a Diabetes Social Media Advocacy (#dsma) chat on Twitter one night several years ago (and several more after that) and people were really enthusiastic about my non-diabetic self joining the conversation because I wanted to learn. The DOC has, in turn, become my support. They were the people who were constantly reaching out when I was in the ER for blood transfusions, or are the ones who reach out when I say my asthma is sucking—just as I do when someone tweets an out-of-range blood sugar, or shoot an iMessage off to a friend just to check in when they’re struggling with their diabetes. They are a big, passionate and loving community, and that is because of the individuals that are a part of it: they see the bigger picture, and they want to make the bigger picture BETTER.
In my day to day life, yes, maybe diabetes is just a passing thought when one of my few local friends quickly checks their blood sugar or takes an injection at lunch—but it’s also knowing enough that I can provide a bit of empathy and humour. One day at dinner, a friend tried to check his blood sugar under the table and I just laughed and said “Hey, I know what you’re doing, it doesn’t bother me if you use the table, you know.” If asthma has taught me one thing, it’s that we all try to be stealthy with our disease management sometimes, and often it’s more for the sake of not being asked questions than it is we truly want to hide what we’re doing—later that night, though, the same friend did text me his BG (we were, after all, at Olive Garden :]), and I hope that my openness can be a layer of support for him if he ever wants it.
In living with any chronic disease, it’s about feeling like you have options (even if, maybe, they are pseudo-options because they are necessary): to choose who you talk to—because I don’t have diabetes, on occasion friends with diabetes will message me because I don’t have diabetes but have a very basic understanding of what they’re talking about; to change up your routine; to use different methods of treatment. Using a continuous glucose monitor is one of those options—because while the information can be extremely helpful, it’s also a constant reminder of where you’re at and can lead to data overload. Same with using an insulin pump for those who are insulin dependent: it increases flexibility in some ways versus injecting insulin, but it also means that 24/7 you are tethered to a small machine or have an insulin pod stuck to your body. Which leads to the choice aspect: my friend Bethany (above) has had T1D for over 30 years. The last time we had lunch, she pulled out an insulin pen and I was like “HEY. Since when are you not pumping?!” (She laughed and was like “Wow, it has awhile since we’ve seen each other, hasn’t it?!”)
Where am I going with all of this?
My friends with diabetes have no choice about having diabetes—they make the choice to do their best, to advocate, to change their world and the worlds of others with diabetes though support, technology innovation, and compassion. Diabetes is 24/7, in a far different nature than asthma is: with diabetes, the same hormone that is provided through injections or pumping, insulin, to save a person’s life can also be lethal—diabetes is a constant balancing act. It is psychologically invasive in a different way than my own chronic disease is. None of us have a choice, but we can learn how to best support one another. If I can provide the kind of support that says “Yes, I want you to be healthy. I want to support you as I can, as a person without diabetes—I’m here to accept where you’re at and listen. I want better things to be available. I care.” this is what I want.
Read that last sentence over and simply take out the segment that reads “as a person without diabetes”—shouldn’t this be how we all interact with each other? By learning about where someone is at, and accepting them in that moment?
My friends with diabetes can DO THIS. They can manage their diabetes with the tools they have. And because they can DO this, the ins and outs of life with diabetes, I can certainly LEARN this: a few small lessons about their worlds that hopefully make them feel supported in the way we all want to be. Even if at some times that just looks like a non-diabetes conversation for a break, or having some snacks on hand and waiting out low blood sugars with my friends.
Because that’s the most important part: we are here for each other, because we’re friends.
To my friends with diabetes: Thank you for everything you’ve taught me—I owe you all a hug! :]
In August/September, I ventured from Winnipeg to Minneapolis to San Francisco, to the East Bay, to Santa Cruz and Davis, California . . . to simply start the journey that lead me to the campus of Stanford University. I already wrote about the people—so, here are more of the good things. . . and a chance to meet the people and hear their voices and stories, and how technology and social media, engaged patients and engaged providers are changing the realities of medicine, and more importantly, improving patient care outcomes.
Disclosure: Stanford University, Stanford Medicine and Stanford Anesthesia, as well as their partners (including the Kadry Foundation, Eli Lilly, and Boeringher Ingelheim) covered part of my costs to attend Stanford Medicine-X, including part of my airfare, one night of hotel, and a significant portion of my conference fees. As a recipient of an ePatient Scholarship in the Engagement/Producer track, I was required to produce a blog post, video, etc. to share the stories of Medicine X—but, let’s face it, I would have done so anyways :].