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

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).