Merry Christmas, folks!!! This year I am writing to Santa about some of the things I want for the CF Community in the near future… if you have anything you’d like to add, let me know in the comments, and we’ll see how we can address them!
Open up the Cystic Fibrosis Patient Registry
We’re making progress here, but it still hasn’t happened yet. I want the Cystic Fibrosis Patient Registry to be open access. Let the patients in. Why must we continue to be reliant on others for our success? The collective intuition across the patient population is remarkable, and we need to start seeing it as a resource. We always say CF is an individualized condition, “no two people have it the same,” well if that’s the case, let’s capitalize on it. Enough with these community votes. Let individuality shine through.
Grassroots support for a diverse antimicrobial portfolio
We’ve already learned this lesson the hard way. The lack of a robust antibiotic arsenal is a determent to the patient population. It has been swept under the rug for far too long. There are a lot of promising candidates coming up through the pipeline, but we must push for more. There is no reason for us to limit what we’re pushing down the development pipeline. I want grants on grants on grants on grants given to anyone and everyone showing clinical success in treating chronic respiratory infection. Yes, that means the phage research at Yale. If you happen to have four and a half billion dollars in your bank account (you know who you are) and you’re not getting on board with an effective method to treat the sickest amount us, then you’re doing a disservice to the patient population. Diversify the antimicrobial portfolio… or someone else will.
Use patient feedback
Kind of similar to the last one, but on a micro level. Care providers, listen to your patients. If that means you have to unlearn everything you learned in medical school, then so be it. Get off your pedestal, and come down to our level. The best doctors are already doing it, why not you? Your patients have access to a wealth of knowledge. No, I’m not talking about WebMD. Your patients have access to the same things you learned in medical school, except for us, it comes free of charge – it is real life experience. Can you believe it? I know it’s hard! We are a wealth of knowledge, lean on us, join our team, and open up to feedback! We all want the same thing… survival.
A stronger patient population
Patients, use that will to survive. Folks, it’s time to come together to push for things we need in our community. We’re the ones laying in the hospital beds, often reliant on oxygen and suffering through the monotony of gradual decline. We have the ultimate incentive to make things better for all of us. Talk to each other, disagree with each other, and use that to be open and candid with the groups and organizations supporting us. Show a little personality. We all say we’re more than our illness, so let’s actually get out there and show it.
Celebrate the amazing things headed our way
I know I can be pushy, dissatisfied and, sometimes, a little loud, but I want to. I want the best for all of us. I also want us to recognize how far we come and all of the amazing things that stand in front of us. 2019 is going to be an amazing year for people with cystic fibrosis. Our lives will change, and we’re going to show the world what we’re capable of. I have a lot that I still want for our community, but let’s take a moment celebrate how far we’ve come. In the months ahead, we will see a cystic fibrosis for little ones that is not at all like the cystic fibrosis we knew when we were growing up, and that is a profound success. Our pediatric community has lots of hope, lots of hope, and that is something that should bring a smile to all of our faces.
This wouldn’t be a Christmas post without my favorite Christmas video!
