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).

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

  1. Hi Kerri. Here are my thoughts on the subject. I am nearly 60 years old and have been dealing with this asthma label for only 8 years, unlike many in our community, and that is my full disclosure. I am a skeptic by nature and anytime a business, be it pharma or a computer company, sponsors a gathering and pays for people to be there, they are in it for business reasons–a financial gain. It may be just to get their name out there. It may be to convince people they are really nice and are not the evil ones. Sponsorship is great for many reasons and yes, you get to see friends and make new ones, and have great conversations and learn new things. I do understand your enthusiasm and appreciate your cautionary approach as you consider these “sketchy” details.

    Still, maybe I am old school on this, or maybe I simply have been annoyed with the many pharmaceuticals in my medicine cabinet and the large hole in my wallet, the large chunk of time it takes each and everyday, keeping track of when to refill each, etc. Maybe the real truth is, I am furious with these drug companies for overtaking US physicians and changing the medical community as a whole. Doctors in the U.S. do not disclose which pharma companies they do business with and the patient-doctor relationship is altered by that. As you know I am in the medical field and I am a patient. When I worked at UCLA, they wouldn’t let us write with a pen that had a vendor/pharma label on it! It is so important that our patients think of us as unbiased professionals.

    I know the issues from both sides. I have attended pharma sponsored events and have heard doctors give research-based talks and had to reveal their where their funding comes from. It all leaves a very sour taste in my mouth. It reminds me of many things I have witnessed on conflicts of interest. Is it a sales job or is it evidence based findings? It is muddy water sometimes.

    But, I wish you a wonderful safe trip and to blog about your findings and perspective. I hope that they are well-meaning and beneficial to the asthma community, their sponsorship results in positive things, and their effort is authentic (and my skepticism is unwarranted.) I hope my rant here is understood by you and your readers…I am a distrustful soul. Plain and simple!

    1. I’ve said it before that as a Canadian I may have a less pervasively negative view of pharma than many Americans do, so I think that’s important to note in the equation. Also, I think some companies are trying to fix this perception [though, are they doing it well, I can’t comment]. I do think, though, that even if just by even forced disclosure of where the money comes from, this is not necessarily a bad thing–because we know the bias. [Just like we now know I’ll think a bit more positively of GSK because of this adventure–but, I think equally positively of Eli Lilly for their session at MedX, of AstraZeneca and GSK Canada, and Boeringher Ingelheim for having people at our NAPA meetings earlier in the month… So yes, my interactions with pharma have probably also skewed my perceptions of them as well, BUT, this is one thing I said to the people from, is that I have a different view of them because I have met the faces behind the company (yes, potentially salespeople, yes a small fraction, yes, the people who maybe care about me slightly more than the all mighty dollar), but, what if all–or at least a larger proportion–of patients had the opportunity for this dialogue? I mentioned this to them, and I think people would be a lot more receptive to this as patients than one might think. Because the ones who care are the ones who would rise to this, and the ones who have no interest wouldn’t partake. Know what I mean? I don’t know that it would help, but it would be worth trying, I think.
      So, I understand both sides. But, I also thought positively of Pharma from previous interactions prior to being flown to Denver on their dime. Yes, bias, I probably have some. That’s what disclosure is for, I guess.
      Thanks for your feedback, Rona!

  2. Nice map, Kerri! (Where can I make one?)

    I’ll have to agree with Rona. The one time I went to a pharma sponsored conference (QVAR’s Israel launch in Tel Aviv), it was super fancy and lavish. Pharma companies are rich. They exist to make money. In the US, that comes right out of the customers’ pockets. Here it comes out of the government’s budget. We participants (doctors and me) were wined and dined and listened to lectures all day that made it sound like if only all patients were compliant with their medication, no one would have asthma symptoms ever. And we know that is simply not true. There was no mention of cure. It was as though that idea had never passed through these people’s minds. And likely it hadn’t. Cuz then they’d be out of a job. Cure a disease and no one will rely on your controller meds anymore. But hey, if they are flying you out there and giving you free stuff, I’d say go for it and enjoy. You’ve pumped enough money into their system. You deserve it 🙂

    1. TripAdvisor! :] I’d love to see your map. ;).

      I haven’t had a chance yet to blog about the experience, but the people from GSK were really cool and honest with us about this. Both Juan and Karen read this post and said they were happy I’d put the discussion out there. Like I said, there’s still a lot we [or, they] can do better–and, they asked for feedback on this, so… it’s a start. But I’d rather a start than nothing.

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