The early streams from day two in Denver were a bit science heavy, especially for a Friday, BUT this science affects us, so let’s go through it.
Yesterday morning’s plenary about inflammation was a giant shift away from the constant stream of modulators that has been coming from NACFC over the past few years. We’ve spoken about inflammation on here a few times, notably in the context of some of the drug developers who have received massive support from Cystic Fibrosis Foundation to address our needs.
My biggest takeaway from the plenary, though, was the discussion of where inflammation comes from. Dr. Felix Ratjen presented data showing inflammation is caused by CFTR dysfunction and the presence of mucus in addition to infection.
“Three important components drive airway inflammation in #cysticfibrosis: dysfunctional CFTR, infection, and mucus retention.” -Felix Ratjen #NACFC pic.twitter.com/mGxHWkK2xB
— Cystic Fibrosis Foundation (@CF_Foundation) October 19, 2018
To me, that’s something worth noting. For so long we’ve correlated the presence of inflammation with infection. We live with chronic lung infection, so therefore our body’s immune system uses inflammation to combat the issue…. Inflammation gives the impression that its harder to breathe, we feel “tight.” Now, however, we think inflammation is just part of CF. Perhaps it has to do with our CFTR disease as well as the abundance of mucus in the airways (thanks to CFTR). One would hope that if we could clear up the inflammation, we might be able to enhance our CFTR modulators? Maybe? Or is that just wishful thinking?
“People living with #cysticfibrosis who do not have effective CFTR modulator therapies need progress on all other fronts, including mucus clearance agents and effective anti-infective and anti-inflammatory therapies.” -Felix Ratjen #NACFC
— Cystic Fibrosis Foundation (@CF_Foundation) October 19, 2018
Pulmonary exacerbations will continue to be at the forefront of the discussion now that the FDA is utilizing them as a marker for success in clinical trials. There’s been a prevailing notion that pulmonary exacerbations were a subjective occurrence – a patient feels worse, and thus he’s experiencing an exacerbation. For the first time ever, though, I heard pulmonary exacerbations in the context of something that is an objective occurrence for people with CF. That’s a big time switch from years of CF medical jargon.
Finally, if you listened to yesterday’s live podcast, you heard Lea’s AMAZING idea about how to make NACFC more patient inclusive. A big part of NACFC is the sessions and presentations, sure, but what really sets NACFC apart from any other cystic fibrosis conference, however, is the vendor exhibition. That’s where EVERY group that is trying to help and influence patient lives comes together and presents their ideas to medical teams, families and the few patients who attend. It’s the meeting of the minds that we talk so much about.
Lea’s idea was to have a virtual exhibition running alongside NACFC. To our knowledge there is no concise list of vendors who attend (if there is let me know!).
Who are they? What are they going to do for us?
It makes no sense that patients should be denied the opportunity to learn about Folia Health, Cystic Fibrosis Learning Network and small medical manufacturers like GlycosBio (who is making food that doesn’t require us to take enzymes).
Did you know about any of those organizations I listed? They are a few of groups who go to NACFC and attempt to make an impact. If you don’t go… you miss out, and since… well… patients generally don’t go, we miss out.
Just a few musing for today! I’m excited for what remains in the final day of presentations… we’ll be podcasting LIVE tonight on the Boomer Esiason Foundation Facebook page!
UPDATE: Cystic Fibrosis Foundation reached out to me and has provided a FULL list of organizations who were present at the Vendor Exhibition. You can find that list HERE
