Street Meat with a CF Monster
Ok, I have written this blog post 4 times now. I am done “tweaking it” and trying to be fancy. It’s true I have always wanted to write a book or be a photo journalist but I am neither so I need to hit publish and move on. Just for kicks here were a few of my takes at being “fancy”. :)
I tried writing about VLC in story form where a CF Monster chases me past secret service agents in front of the White House. That was a ridiculous pitch. Although, I did like the part about having secret service agents at my disposal to keep my son “safe” from a disease that will slowly try to deteriorate his body. That was a good line.
Let’s see…one of the other ideas was to center the whole thing around oxygen as a way to settle your soul. You know people with CF usually have lung issues. I spun that by talking about how “getting oxygen” looks different at different times. Like taking your crazy dog for a walk, digging your hands in the dirt, crying in the car while you aimlessly drive through your city, getting cozy on the couch with a good book, running until you want to puke, taking a mid day catnap or listening to music at levels that are sure to burst your eardrums. I still like this idea but it didn’t quite hit home.
Last but not least was the one of me outrunning a panic attack. I really did almost have one. Thank goodness for good music and blue skies to calm the storm. I walked for an hour, ended up by the Washington Monument, took a selfie and FaceTimed with my kids. In this story, I was looking for a cure in between the tourist stands selling Happy 250th Birthday America gear and hotdogs on 17th Ave. This pitch did not work either but in hindsight I should have at least bought some street meat and a t-shirt.
After all of those tries I decided to just give you the facts. You didn’t get on this blog to read a fictional story. You got on here because someone you care about has CF and you are hoping to make a difference, just like me. So here goes.
I attended the CFF Volunteer Leadership Conference (VLC) in March. This year it was held in D.C. I missed the days on Capital Hill but made it for the conference days. Before I go any further let me first say I am not an expert in anything when it comes to CF except for being an advocate for my son. I have no medical background and I do not work for the foundation so these are just my observations.
I apologize in advance, some of it is discouraging. It is hard when you realize you are attending a conference not to learn more about your hobby or to get better at your job but to try to save your son‘s life. So much fear, hope and uncertainty in one weekend. Not trying to be a Debbie downer (apologies to Debbie’s everywhere) just being honest.
These are not listed in any particular hierarchy - it is merely the order my brain remembered them. Here we go.
We are not as close to a cure as I thought. They have had some hiccups with how to administer the “cure” since lungs are so complex. Insert me looking for a cure on 17th Ave.
It is going to cost a lot more than originally thought to find a cure. As we know, inflation drives everything up. Paying for research is no different. Drug companies will have to be paid a lot more to “encourage them” to keep working on a cure. This part makes me sad mad (our family took that term from the movie Inside Out). Drug companies make a significant amount of money off of people with CF because of all of the medicine they take. If a cure is found, people ideally won’t need all of those medications anymore therefore the companies lose money.
Life expectancies that we all hear about is for a baby born today that starts CFTR modulators at basically day one. This is awesome but when they showed the graph and I saw that someone born in 2018 is expected to live to 53 my heart sank…that is when my son was born. That life expectancy is still better than it used to be but it is not long enough. And only 50% of the population make it that long. Insert panic attack story.
Start saving now - adults with CF are being denied Life Insurance. The fact that people with CF are living this long is amazing! Unfortunately, insurance is a nightmare. Ours denies my son’s enzymes every year and tells us to give him a multi-vitamin instead…. (Insert me banging my head against the wall). Thankfully we have a good CF Care Team and a Pharmacy that fight for us so he can continue on the enzymes. But I never thought about Life Insurance.
There may not be many more new modulators coming out. The CFF will continue their research on modulators currently being studied but will start to shift their focus to a cure instead of new modulators. I have mixed feelings on this. My son is able to be on Trikafta, but only the morning dose and the side effects have been pretty awful but ultimately a cure is what we are hoping for. Insert CF Monster story. But what if he can’t handle “the cure” and has to remain on modulators? What choices will he have?
I am concerned that the CFF has lost some sight of who they are fighting for. Please don’t judge me yet. Hear me out. Hopefully I am wrong. Like I said earlier, I do not work for the CFF but in all of the “CF things” I am in I can say that CF families are starting to feel left out or not heard in spaces that they used to feel included. The CFF must be aware of this because they mentioned that they are putting CARE at the top of their 5 year plan. I hope that is the case.
Ok - now some good news! They are working on a 1 pill enzyme instead of the 15+ that people with CF take every day. They did not go into the specifics of it at the conference but this would be awesome! My son currently takes 23 pills a day. That is a lot of pills to swallow!
Saved the best for last! There are TONS of amazing people out there fighting for a cure and a better life for people with CF. And odds are if you are reading this you are one of them. Thank you!
Yay - the list is over! Congrats if you made it this far! You win a D.C. hotdog! Just kidding - I can’t send that from where I live. Thanks for hanging out with me and supporting someone with CF. Eventually we will find a cure. I say “we” because it will take all of us to do it.
Until then, I will continue on these quests, meeting new people, taking goofy selfies with landmarks and writing these posts that hopefully somebody is reading. Maybe I will end up in your neck of the woods and we can meet for a coffee. Hopefully when we sit down I will be smiling and get to tell you all about the advances in CF and that my son has a much better shot at living to be an old man. I might even wear a tacky tourist t-shirt from your city. Because why not? Life is too short to be serious. Just ask my kids and they will tell you I am not normal. Until next time. Cheers!