North American Cystic Fibrosis Conference Day 1 Recap & Podcast

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.

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.

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!

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:

^^shout out to my registry people!!!!

If you missed our LIVE podcast yesterday, you can check it out below, or of course head over to iTunes or SoundCloud!