It’s conference szn, people! If you caught our Facebook Live earlier, you might know that we are LIVING on the CF Foundation’s live stream this week. Following along with us HERE.
To be clear, I am NOT at NACFC because I value my health. I’m not going to dive into the middle of that petri dish of conference where Infection Control and Prevention is totally overlooked, but I digress.
I love that Cystic Fibrosis Foundation is LISTENING to feedback from the patient community. Infection Control and Prevention deters (most of) us from going to NACFC, so the patient perspective and presence is very clearly missing from the conference. How can you have a celebration of the science around cystic fibrosis without the cystic fibrosis patients?! But alas… CFF is doing what they can to include us. Do more next year!
Above all else, I was most excited to learn that the prevalence of pseudomonas infections is declining. That’s AMAZING news, but it was sobering to learn that NTM and MRSA infections are on the rise.
— Cystic Fibrosis Foundation (@CF_Foundation) October 18, 2018
To that end, it was amazing that an entire plenary session was dedicated to infections. Talk about infections is really long overdue, and I’m thankful that we’re starting to realize that, yeah… infections generally kill a lot of us. It’s nice to see that at the forefront.
Notably missing from the talk of infections, though, was the discussion around fungal infections. The topic was just kind of brushed over.
Fungal infections, specifically aspergillus, seem to cause problems for people with CF, but for some reason we fail to address them community-wide in the US. We know ABPA can be a problem for people with CF, but there are patients out there who don’t have ABPA, yet still culture aspergillus. In those particular cases, patients are feeling like they’re totally overlooked.
I'm a bit concerned that the @CF_Foundation new #Infection Research Initiative doesn't include #fungi. This is a post from yesterday's #NACFC 2018 live stream. Fungi seem to be an afterthought! I think it all starts from the #registry for #cysticfibrosis and tracking @aspergillus pic.twitter.com/6Ed7mVGPt3
— DoubleTrojan (@DoubleTrojan) October 19, 2018
It’s important to remember that our CFTR modulators are not antimicrobials, so as we suspect people will start to live longer, we’re going to need to address several things as far as treatment for infections is concerned: What does long term use look like? How do we get antibiotics to work against bacterial resistance, or what new medications can we find?
So what does this mean for people with CF?
CFF is committing $100 million over the next 5 years to anti-infective research and development. Again long overdue… but that’s music to my ears!
We’re thrilled to announce the new Infection Research Initiative. The mission is to improve detection, diagnosis, treatment, and outcomes of infections for people with #cysticfibrosis. #NACFC pic.twitter.com/HOXOR84650
— Cystic Fibrosis Foundation (@CF_Foundation) October 18, 2018
The funniest part of the day was the discussion about alternative remedies. I can’t believe they (whomever “they” is) actually had to dedicate time to address alternative remedy use in CF. If you missed that discussion, don’t fear!!! You can still access the achieved version (S06: Controversial Practices – Helpful or Harmful) HERE after you register for the live stream.
….and for the love of God, stay away from pseudoscience.
The content available for live stream certainly feels limited, but it’s worth watching. The plenaries are like the big “sexy” topics that generally affect most of us. The individual sessions, including most of the ones that may not yet be available for live stream are wide ranging and can cover just about anything in the world of CF. But don’t worry… we’ve got you covered. Tune in to our live recording of Breathe In: A Cystic Fibrosis Podcast over on the Boomer Esiason Foundation’s Facebook Page, and we’ll do our best to keep up updated with everything the NACFC stream may not yet be covering.
Finally, I loved seeing the conversation on Twitter around #NACFC or #NACFC2018 – there’s a lot of hope, optimism, and MOST importantly, dissension. If we’re all in agreement, we’ve already lost. I love seeing people ask for MORE. Here are some of my favorite tweets from the day:
— Vertex (@VertexPharma) October 18, 2018
All great talk about new trials for effect of antibiotic(s) on infections….that wouldn’t be necessary if registry tracked antibiotic use. We would already have our data. We need an enhanced registry!! #NACFC #nacfc2018
— Erin Moore (@ekeeleymoore) October 18, 2018
Gangs all here!! #NACFC @jcahillYCF @CMcEwan13 @HZNPplc @EloxxPharma @MylanNews @CorbusPharma @ColumbiaMedic @GileadSciences @genentech @ChiesiUSAInc @kate_farms @VertexPharma @abbvie @Allergan @AbbottNews @novonordiskus @CFF_CNY @cff pic.twitter.com/odBJo5zMBw
— You Cannot Fail (@YouCannotFail) October 18, 2018
The 1st #NACFC plenary session is underway – We're excited to be here with nearly 5,000 members of the #cysticfibrosis community focused on improving the lives of people living with #CF! pic.twitter.com/T1dvdhHqW7
— TranslateBio (@TranslateBio) October 18, 2018
Encouraging to see a session on #CF trials and what features of trials are important to patients at #NACF2018 #NACFC. It would be great to hear from UK patients what puts you off or makes you want to take part in trials!#future4cf
— ManchesterCFResearch (@Manchester_cf) October 18, 2018
Dear William Skach Senior Vice President of Research Affairs @CF_Foundation , median age of survival for CF patients in 1989 wasn't 30 years old. According to the #CFFoundation registry in 2016 (latest data we have), median age of death in 2016 for #cysticfibrosis was 29.6 #NACFC pic.twitter.com/iWdb1uei8c
— DoubleTrojan (@DoubleTrojan) October 18, 2018
#NACFC @CF_Foundation Registry Meeting. Looking forward to electronic data transfers between EMR & Registry Pilot results in 2019. Happy to hear the shout out from the team to @G17Esiason for igniting people with #CF to ask for their Registry data. pic.twitter.com/TvN3Xib74o
— Kathryn Sabadosa (@KSabadosa) October 17, 2018
^^shout out to my registry people!!!!
Today is the first day of #NACFC! Dr. Stuart Elborn will be presenting a poster about our Phase 2 #acebilustat data from 9:45-11:05am MDT in room 702. Swing by to talk to him if you’re here! #NACFC2018 pic.twitter.com/MAdL9AjVqD
— Celtaxsys (@Celtaxsys_inc) October 18, 2018
— Proteostasis (@PTI_Biotech) October 19, 2018