adventures / advocacy / asthma / health advocacy

pre-#gskAsthmaSummit thoughts: the patient-pharma relationship learning-curve

• by kerri

travel map

Tomorrow, I jump back on a(n agonizingly tiny) plane, this time to Denver, Colorado (another new dot on my travel map!), for the GSK Asthma Summit (disclosure below).

I’ll be connecting with others who blog about asthma, and learning more about asthma management in schools and the impact of a GlaxoSmithKline-sponsored program being run in Colorado and Connecticut (note: I cannot spell Connecticut without spell check. I am not sure why). I am excited to learn a lot more about the Building Bridges program, and to hopefully learn how we can apply some of the strategies being used in this program to school asthma care here in Canada.

The asthma blogging (and advocacy in general) community is surprisingly small considering how widespread this disease is: 10% of Canadians and 8% of Americans live with asthma. Yet, I’ve often said that with commonality comes apathy: just like we don’t have crusaders against the common cold (…if you are a rhinovirus advocate, please forgive me?), we seem to be short on people creating a conversation, creating attentional rise, creating change for those living with asthma in a world where if you know 50 people, you probably know 5 people with asthma (…and I bet most people know way more than 50 people). I’m looking forward to reuniting with my friends Steve and Dia, of course, but I’m also excited to meet others who talk asthma in the online world—you’d think with there being few of us, we’d find each other easier, but that doesn’t seem to be the case. So, I appreciate GSK bringing the handful of us invited together for this event—GSK also ran a Lupus Summit last week, and I enjoyed reading the tweets from Tiffany and others with lupus who attended the event.

Here’s the deal (official disclosure, again, below): GSK US is paying for everything associated with the Summit and trip to Denver. I know that there are all kinds of perceptions around this—my own perception changed drastically after meeting Joe and Jerry from the Clinical Open Innovations team from Eli Lilly: Pharma creates these opportunities because there are people in these organizations who legitimately care about patients. The perception that it is us [patients] vs. them [pharma] needs to change. I won’t deny that for a time pharma likely was the cause of this (because like, “yes, we’d like to help you but this drug is $570,000,000 so pay us and stuff,” can be how it seems, and is perhaps to an extent, accurate), but there are people working for these companies now who are there because they realize that this ideology exists and they know that, for our wellbeing, that needs to be changed. Two weeks ago I met, again, Helene from GSK Canada, as well as people representing AstraZeneca and Boeringher Ingelheim. They sat in on our National Asthma Patient Alliance meetings, because they also responded to the ASC’s need for funding to make those meetings happen and get us all there from our varied map-dots across Canada. Similarly, GSK US didn’t just turn me away because I’m Canadian—I’m still jumping on a plane to Denver tomorrow, and Dia is, too, because they (hopefully.) realize that the only way to create solutions for patients… is to create them WITH patients.

Because it is not patients vs. pharma: it is not us vs. them: my conversations with Jerry and Joe proved that to me, as did speaking with Helene, as did my phone call with Juan from GSK US (as, I am sure, will meeting him and others at GSK tomorrow): we are, to snag the MedX workshop title, partnering for health. Even if the partnership is not perfect (and what partnership truly is?) at least they are trying, and at least patients are trying to meet that effort of stepping towards true partnership—which, in an ideal world, would be far more constant but remain unbiased. And with that, it needs to be understood that even if there were no trip involved, if any pharmaceutical company reached out to me for feedback, or to hear my story, or anything, I would be okay with that. The reality is, though, that the patient experience needs to be valued. Putting me (us) on a plane to spend all of 37 hours from wheels up to wheels down in transit and in Denver is a really good place to start in building relationships that actually mean something and can affect change without being sketchy. Then, hopefully, we can do more. I am not in any sort of formal partnership with GSK (or any other pharmaceutical company), and the thought still kind of feels sketchy, however, while diabetes tech companies do such events frequently (maybe or maybe not run by pharma), there’s a lot of uncharted territory in this in the asthma world. And I am willing to meet halfway and see how this goes: hopefully to create better strategies, better care, better things for people with asthma.

GSK is not making me do anything in return. I don’t have to blog or tweet a damn thing If I don’t want to (but I will. With complete honesty. Because that is even more important than, and within, partnership). As a patient, I realize that now, after many decades, pharma is trying to make the effort with us—even if it is trial and error, I am just happy they are trying while expecting transparency from the patients they engage (but as I always am).

It just so happens, however, that separated from my skin by a thin layer of fabric is a near-constant inhaler in the right pocket of my jeans, made by GlaxoSmithKline worldwide. Because, unlike the generic manufacturer, it seems GSK actually gives a shit that their inhaler doesn’t taste like mosquito repellant. It’s really about the small things sometimes.

Well, and about the big things, like valuing patient experiences. We’re all learning here, and I’m happy to be a part of that learning curve.

Disclosure: GlaxoSmithKline United States is paying/reimbursing all costs associated with attending the GSK Asthma Summit, including roundtrip airfare to/from Denver, CO, hotel, ground transportation and meals. (And they will apparently pay my Roam Like Home costs, which was beyond exciting—sidebar). I am not required to blog or share on social media about the GSK Asthma Summit, nor do they pay me to do so (nor do they affect the content I produce).

adventures / advocacy / asthma / Canada / friends / health + fitness / health advocacy / life / on the road / social media

World Asthma Day 2015: National Asthma Patient Alliance meetings and #ClearAir15 Summit

• by kerri

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.

Sunday.

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Goodbye, Winnipeg…

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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.

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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!)

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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.

alice and kerri

 

(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!)

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 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.

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(We got lost a bit, but that just means more Fitbit steps!)

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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 ;).

Monday.

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.)

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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.

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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).

#clearair analytics2

Seems about right.

#clearair analytics1

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.

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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.

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Jess and I following the conference—photo credit to Rob.

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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!).

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$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.

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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].

advocacy / asthma / health advocacy / life

owning asthma: seven years… and counting.

• by kerri

I was diagnosed with maybe-asthma seven years ago today.

Spoiler alert: I have asthma.

And basically all I did about it today was take my inhalers this morning, and wear shorts outside for the first time this year, and only realize it was my asthmaversary when I checked the date to write a post on Facebook commemorating my shorts-wearing. I then commented on my frustration that my inhaler flew out of my shorts pocket, because that seemed relevant to both points.

So mostly I did nothing about it. Except for whatever reason, much of my life at this point has been shaped by asthma. Not negatively, not positively, it just is. Just like it just is when I’m having a standard breathing day: not perfectly asymptomatic, not intrusive, a cough to remind me that my lungs are imperfect, and a couple hits of Ventolin before heading out to coach to hopefully keep things in check running around the gym… the gym I wouldn’t be running around in, probably, if I didn’t have asthma. Coming home to do the work and volunteer/advocacy things I definitely wouldn’t do if I didn’t have asthma. It just is, at least today, like any other thing: present, but not defining.

In seven years, I have not “grown out” of my asthma. But I’ve grown with it, grown through it. On Sunday, I’ll head back to Toronto for a National Asthma Patient Alliance Executive Committee meeting on Monday and the Asthma Society of Canada’s Clearing the Air Summit on Tuesday, World Asthma Day. My friend Elisheva, the epic World Asthma Day party thrower, is convinced I’m having the coolest World Asthma Day this year (I have to go buy glow sticks, because nothing says someone let you be Vice Chair of the National Asthma Patient Alliance like glow sticks…). And yet, for the appreciation I have of so many things that have weaved their way into my story because of asthma—and for many cool things that have occurred and many friends I have been blessed with—I have to blame/acknowledge this day seven years ago. The day where I was handed a prescription for an inhaler, and then an inhaler, and couldn’t get any of the medicine in my lungs without an AeroChamber (I’ve mastered that skill since); the day after that; the days, weeks, months, years that have followed, of learning to coexist and make life better with this disease that, even through the surprise good things it has provided, I still hate with everything in me and I know is not going anywhere.

Over the past several years, I’ve chosen to be engaged and own my asthma—just like I choose to own everything everything else. I can’t pretend it doesn’t exist, but I refuse to let it define me. I may engage in a lot of things because of asthma, I may find myself a lot of places because of asthma (c’mon, I can’t turn down a good travel perk for asthma-related good things—also have Denver coming up in May), but I engage in more things simply with it along for the ride. I still get burned out sometimes, but, I try to keep asthma in the back of my mind rather than the main focus. In advocacy, I am rarely thinking about my asthma, but rather the spectrum that this disease actually is—advocacy is not about me: advocacy is about something far bigger than I can even attempt to articulate at the end of the day. However, most importantly, I hope that the ripple-effect of advocacy and all the things I do, and my friends do, both because of and simply with asthma, are not for nothing. I hope the collective we are making progress.

I realize that I will probably have this disease for the rest of my life—so, I hope that the asthmaversaries keep coming for decades to come.
And maybe on asthmaversary eight I won’t forget until 5:26 PM and I’ll have a cupcake. Or cupcakes. And otherwise do nothing special, because any excuse to have a cupcake is good enough for me, even if it’s just another day of another year of living with asthma, instead of at war with it. I can’t be my own enemy, so I might as well be awesome instead. Even if I have to be awesome and breathless on occasion.

 

PS. Clearly I did not do Blog Every Day April. I barely blogged any day in April, never mind every day. Also I was unsuccessful at NaNoWriMo. I tried.

advocacy / badassmatics / being a student / dare you to move / faith / health + fitness / health advocacy / life / stuff bloggers do / wellness

plan, initiate… result?: reflecting on goal progress [from 2011?!]

• by kerri

So this, this is all too true. And with that, I present, Goals from 2011 – Revisited.

Small things

  • Focus on the good things.
  • Complete the onehundredpushups program and not derail. Yes, I am doing girly push-ups. It is better than no push-ups.  If all goes well, this will be completed by the end of January.
  • Stop making Saturday and Sunday the exception: 
    • the weekend is not an excuse to only brush my teeth once a day instead of twice
    • it is not an excuse to forgo a workout or two
    • and it is not a cop out for eating all kinds of random food.
  • Become more reliable at hitting up the cardio workouts 45 minutes/day, 5 days/week.
  • Read over the day’s notes when I get home from school and make study notes as the term goes on, because it will make finals suck less.

Bigger things

  • Health advocacy: do new things, reach beyond what I’ve already been doing in some way.  [Maybe that’s doing more races sporting the Team Asthma gear, maybe that’s trying to see if volunteering at asthma camp will work this year, maybe that’s giving my time and my own body for research if I’m eligible.  It could be a lot of things, or all of these things].
  • Actually walk a half marathon.  I’ve been saying I’m going to do one for about two years, so let’s make 2012 the year pending all goes as planned.
  • Work with others to help them realize their own potential, be a part of that ripple effect.
  • Figure out where I’m at with God.
  • Make another attempt at the 365 project.
  • Hesitate less, do more.

So. How have I done?

Focus on the Good Things: It’s a conscious choice, but I try to nail it every. Single. Day. And I think I’m succeeding for the most part.

Onehundredpushups: Nope. I can safely say that I have not, nor am I trying presently, to be able to do 100 pushups… of any sort.

Stop making Saturday and Sunday the Exception: Here’s the issue: every day is Saturday and Sunday to me right now. Which means that I try often and fail at brushing my teeth twice daily—I always get bedtime in, morning is a bit tougher to remember and I don’t know why—I can tell you that I haven’t done any working out since several weeks ago when I impulsively bought a yoga app and did a yoga workout I really enjoyed and then… didn’t touch it again—and, I eat random food all the time. Right now I have Combos beside me. If you want to talk about random food, that is the epitome of it right there.

Become more reliable about hitting up the cardio workouts: 2013 derailed this because I was sick for so much of it. But you know what? it’s effing over. 2013 is effing over and it has been for a long time, and yes that got me off track but it is no reason to still be off track.

Studying: Currently irrelevant, but I can say I never really made good on this, except for in Anatomy round 3.

Health advocacy: In the big picture, I have done this—when I wrote this, I had maybe haphazardly filled out an app to medicine-x at Stanford… But then I got in for 2012. I had yet to learn of attending the World Congress of Asthma with the Asthma Society in Quebec City in 2012. And, I had yet to know that I’d start taking on more roles with the ASC, link up with the Canadian Severe Asthma Network, attend MedX again, and, most importantly, find more ways to practice everyday advocacy within the places I was all the time: school and work. So I’m going to give this a check mark—but it’s a constant growth, and I still have more work to do. See also: Badassmatics!

Actually walk a half-marathon: I don’t even know if this is on the goals anymore to be perfectly honest. But maybe see that thing about cardio above.

Work with others to help them realize their own potential, be part of that ripple effect. I’m gonna give this one a check-mark, but once again, that isn’t something that ends.

Figure out where I’m at with God. My journal would indicate that is still a big question mark, but it’s actually something I’ve been contemplating in the last week. And, I feel like I might never figure that out and that’s just part of my story.

Make another attempt at the 365 project. CHECK MARK. More to come on this!

Hesitate less, do more. Sometimes I meet random strangers off the internet in airports in a country I don’t live in, and they drive you down me state awhile and drop me off to crash in a hotel with someone I also don’t know. And then I repeat that process in a few different ways in a few different states. And, sometimes those people end up becoming your best friends. That’s a pretty extreme example, and I’m sure there was a lot of reservation, but… adventure is really not born of extreme caution, it’s born of optimism and trusting your instincts. And, it’s worked for me.

—

There are certainly things to build off of here, but the important thing is, I have been building. But, I need to act more, and more fully. And I know this—I just have to harness the energy to make it all happen, because I can. In the coming weeks, I’ll revamp the goals list for 2015—and be doing some introspection surrounding previous goals lists, too.

Even though I am to not be bound by calendar years, yes, that fresh start effect everyone gets so into is contagious.

advocacy / asthma / badassmatics

find me at “anonymous asthma”!

• by kerri

Head on over to my friend Olivia’s blog to check out my guest post/interview from this weekend, where I share a bit about my asthma story and perspective on asthma, what I do with the Asthma Society of Canada/National Asthma Patient Alliance and the Canadian Severe Asthma Network, and living positively with asthma.

Olive lives with asthma and is involved with Asthma UK and shares her stories through her blog, as well as on Instagram. Thanks for having me share my thoughts, Olive!