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(41 Action News)   Kansas City teen with cystic fibrosis expects life expectancy to double after partaking in trial for experimental drug Trikafta, which is now approved for use for patients 6 years old and over   (kshb.com) divider line
    More: News, Cystic fibrosis, Pulmonology, Annaka Haynes, Dr. Hugo Escobar, cystic fibrosis, couple years, Children's Mercy Hospital, life expectancy  
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2315 clicks; posted to Main » on 25 Jul 2021 at 2:25 AM (13 weeks ago)   |   Favorite    |   share:  Share on Twitter share via Email Share on Facebook



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2021-07-25 12:12:54 AM  
That is excellent. I know there is a Farker with CF so I hope he sees this.
 
2021-07-25 12:29:51 AM  
This is fan f*cking TASTIC
 
2021-07-25 12:46:36 AM  

feckingmorons: That is excellent. I know there is a Farker with CF so I hope he sees this.


puffy999: This is fan f*cking TASTIC


Indeed.  So vote it so.
 
2021-07-25 12:51:11 AM  

Staffist: feckingmorons: That is excellent. I know there is a Farker with CF so I hope he sees this.

puffy999: This is fan f*cking TASTIC

Indeed.  So vote it so.


Fark user imageView Full Size


But good idea.
 
2021-07-25 2:28:24 AM  
Green light this twice more.
 
2021-07-25 2:30:26 AM  
Sent this to a friend whose grandkid has CF. Thanks subby.
 
2021-07-25 2:38:13 AM  
Truly cool. If it all works out I hope they make it more affordable than the shiat they did with the hepatitis farking *cure*
 
2021-07-25 2:39:42 AM  
I just saw it on the news tonight and submitted it. First time I've watched local news in forever and it only was on because I had the Olympics on in the background and didn't bother to switch when it started.
 
2021-07-25 2:43:59 AM  
I read that as "Trikafka", Side effects may include existential dread.
 
2021-07-25 2:48:27 AM  
Rare CF trikafta in play
 
2021-07-25 2:48:35 AM  
We keep finding ways to give those w/o hope, hope.

Don't smart or funny this, go donate to a good cause.
 
2021-07-25 2:53:44 AM  

Hoopy Frood: I read that as "Trikafka", Side effects may include existential dread.


Me too.

The drug cures your CF, but you wake up the next day a a bug.
 
DVD
2021-07-25 3:15:23 AM  

harlock: Rare CF trikafta in play


____________________________

You know two other CF patients that are taking this drug?
 
2021-07-25 3:19:24 AM  
Are you suggesting that Trikafka is for kids?
 
2021-07-25 3:37:24 AM  
Great news for sufferers of CF. Having asthma sucks and I can't even comprehend how difficult that must be to have CF.
 
2021-07-25 3:43:38 AM  
Vertex?

(Clicks)

Yep, Vertex.
 
2021-07-25 3:45:31 AM  
That is indeed good news.  When I was in 2nd grade there was a kid in my class that had CF.  We weren't really friends but I liked him well enough, especially after we were at a pizza party and he let me have the cheese he picked off his pizza because he couldn't eat it.  He didn't make it to 3rd grade.
 
2021-07-25 4:07:59 AM  

Neondistraction: That is indeed good news.  When I was in 2nd grade there was a kid in my class that had CF.  We weren't really friends but I liked him well enough, especially after we were at a pizza party and he let me have the cheese he picked off his pizza because he couldn't eat it.  He didn't make it to 3rd grade.


... man...
 
2021-07-25 4:10:53 AM  
I mean, people who know people with CF... don't jump the gun. This is America. Even if this drug is PERFECT they're gonna fark it up. Like $50k per dose so either be rich or on the *right* insurance or something.
 
2021-07-25 4:13:11 AM  

Neondistraction: That is indeed good news.  When I was in 2nd grade there was a kid in my class that had CF.  We weren't really friends but I liked him well enough, especially after we were at a pizza party and he let me have the cheese he picked off his pizza because he couldn't eat it.  He didn't make it to 3rd grade.


The kid who introduced me to childhood diabetes and the pitfalls thereof went on to stop a school shooting years after we lost contact. Talk about the weirdest thing.
 
2021-07-25 4:21:56 AM  
Estimated cost in the US is over $300k a year. Which is probably about 10 times what other countries will pay.
 
2021-07-25 4:22:16 AM  
This is great news for people who still want to live in this world!
 
2021-07-25 4:58:10 AM  
I have cystic fibrosis and have participated in studies for Trikafta and other medications (a supplementary source of income as well).  I've participated in research of different sorts for about seventeen years now.

Trikafta (name comes from the three "-caftors" that make it up, more on that in a bit) is a kind of drug that is a particulalrly recent creation.  It acts on the genes responsible for cystic fibrosis's effect, in effect making them work properly.  These drugs are CFTR modulators:  elexacaftor, tezacaftor, and ivacaftor.

Without these, I'd probably not be around today.  I was 27 when I first started on them, and before these, I struggled to hit 130 pounds (at 5'10, this was an issue).  Then I noticed I was putting on weight (and my lung function was improving).  When I was diagnosed, they didn't think I'd make it to 20.

Hardest thing about life with CF now is avoiding people with colds (or worse) since catching one puts me at risk of a secondary infection from whatever's in there (think as if my immune system is keeping that in check, just enough but with the cold coming in, it has to split its attention between the cold virus and the Pseudomonas now pushing forward).  A round of cipro is usually enough,, but I've spent a few days in the hospital as a result of some.  At least if I have to be admitted again, I'll get to see the new patient rooms.  They're tearing down the high-rise where I stayed before:

Fark user imageView Full Size

Queeny Tower (1965-2021)
- Third-tallest medical-related building in the western hemisphere.

Took this picture on the way to my last research visit.

Last year and a half have been trying, to say the least.
 
2021-07-25 5:06:52 AM  

Neondistraction: That is indeed good news.  When I was in 2nd grade there was a kid in my class that had CF.  We weren't really friends but I liked him well enough, especially after we were at a pizza party and he let me have the cheese he picked off his pizza because he couldn't eat it.  He didn't make it to 3rd grade.


CF was the first thing that taught me about tragedy.  Back in the 60s, there was a family up the street that had already lost their oldest to CF, before he made it to puberty.  The next two were girls, very close in age, but healthy.  The parents, knew they were carriers, and kept trying to have a healthy boy.  That woman stayed in a cycle of get pregnant, miscarry, get pregnant, deliver boy child, grieve death of son, get pregnant, etc. for years.

The oldest daughter made it to 25, and the only other surviving daughter was about 20 when I moved away from the area.  Just horrible genetic hand this family was dealt.

This news about breakthrough medicine is wonderful.
 
2021-07-25 5:13:03 AM  

cherryl taggart: Neondistraction: That is indeed good news.  When I was in 2nd grade there was a kid in my class that had CF.  We weren't really friends but I liked him well enough, especially after we were at a pizza party and he let me have the cheese he picked off his pizza because he couldn't eat it.  He didn't make it to 3rd grade.

CF was the first thing that taught me about tragedy.  Back in the 60s, there was a family up the street that had already lost their oldest to CF, before he made it to puberty.  The next two were girls, very close in age, but healthy.  The parents, knew they were carriers, and kept trying to have a healthy boy.  That woman stayed in a cycle of get pregnant, miscarry, get pregnant, deliver boy child, grieve death of son, get pregnant, etc. for years.

The oldest daughter made it to 25, and the only other surviving daughter was about 20 when I moved away from the area.  Just horrible genetic hand this family was dealt.

This news about breakthrough medicine is wonderful.


See I'm the dick but I gotta say, at least modern generations try to adopt in such circumstances.

Sometimes. Which beats the "never" which existed before.
 
2021-07-25 6:38:58 AM  
Okay, I am all for the young woman getting lung function back.  Good for her and hopefully she will continue her improvement. I am serious when I say I am happy for her and her family.

Now, I hope that the pharmaceutical company doesn't act like it normally does.   This could help so many people around the world. But the internal cynic in me is just very sad.
 
2021-07-25 7:05:53 AM  
Darkmeer:

Yes, the dark cynic in me says that insurance companies will fight it so that the "excess population" can fall off the rolls. But the optimist in me says that insurance companies will end up paying less for complications and ER visits that happen so often with CF patients.
 
2021-07-25 7:14:50 AM  
I lost a niece to CF when she was just six years old, That was nearly 40 years ago.  And this is the first time since then that things look really hopeful for people with CF.

Heartfelt thanks to all those research scientists who never gave up.
 
2021-07-25 7:36:19 AM  

kozlo: Darkmeer:

Yes, the dark cynic in me says that insurance companies will fight it so that the "excess population" can fall off the rolls. But the optimist in me says that insurance companies will end up paying less for complications and ER visits that happen so often with CF patients.


I know.   It's an awful train of thought, but the hopeful long-term benefits from it will mean that insurance companies will make this work.

I really hope so.
 
2021-07-25 7:40:39 AM  
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encrypted-tbn0.gstatic.comView Full Size
 
2021-07-25 7:50:27 AM  

puffy999: Neondistraction: That is indeed good news.  When I was in 2nd grade there was a kid in my class that had CF.  We weren't really friends but I liked him well enough, especially after we were at a pizza party and he let me have the cheese he picked off his pizza because he couldn't eat it.  He didn't make it to 3rd grade.

The kid who introduced me to childhood diabetes and the pitfalls thereof went on to stop a school shooting years after we lost contact. Talk about the weirdest thing.


Great, now all the kids are going to want childhood diabetes.
 
2021-07-25 8:41:17 AM  
My daughter turned 22 last month.  She has CF, and has been on Trikafta for a little over a year now.  Her situation is a little bit different than most CF kids, because while her mother has the most common CF causing gene (delta F508), I have a mutation of the carrier gene that, back in 1999, had never been seen before.  While it felt cool to be "mutant", the scary thing was we (and her docs) had no clue how this would affect her.  Thankfully, it seems to have severely tamped down the debilitating respiratory issues.  The digestive issues still remain, and she has to pop four Creon capsules before eating anything in order to process any fat in the food.

Currently, through a combination of insurance company programs, charitable donation programs, government grants, and other assistance, her Trikafta costs us about $15/month.
 
2021-07-25 9:10:36 AM  

Darkmeer: kozlo: Darkmeer:

Yes, the dark cynic in me says that insurance companies will fight it so that the "excess population" can fall off the rolls. But the optimist in me says that insurance companies will end up paying less for complications and ER visits that happen so often with CF patients.

I know.   It's an awful train of thought, but the hopeful long-term benefits from it will mean that insurance companies will make this work.

I really hope so.


Yes. The way they make it work is that everyone pays a higher insurance premium.

They are just a middle-man that takes out a 20-23% cut.
 
2021-07-25 9:29:40 AM  
Beautiful young lady, that has fought to extend her life, and now science has provided a medication to extend it much further.

And all it will take is one anti-vaxxer covidiot to ruin all of that for her.
 
2021-07-25 9:33:44 AM  
That's great. I have a neighbor in his 60s that has it and he is supposed to be the oldest if the close to the oldest person in my state that has it.
 
2021-07-25 10:50:00 AM  
Class action lawsuit in 3....2....1...

Probably has a side effect of dandruff.
 
2021-07-25 10:54:09 AM  
Too late for a friend of mine's (and occasional farker's) dad, but he made it to his 60s with it.

/was gonna make a snarky comment about Gymkata not being effective anymore, but this is good news
 
2021-07-25 10:56:27 AM  
64.media.tumblr.comView Full Size
 
2021-07-25 11:16:46 AM  
Friends son, 15, has CF and I think has been taking this for a little over a year now.  I know his mom thinks it is a miracle and was giddy when he started.  Also allowed him to stop not an insignificant number of other drugs.
 
2021-07-25 12:39:36 PM  

Kitty2.0: Sent this to a friend whose grandkid has CF. Thanks subby.


I read about Charlotte's Web cannabinoid treatment on Fark and immediately called my daughter for a friend's child. The family immediately uprooted to Colorado Springs and the little girl (I think she was six at the time) very quickly was having the first actual conversations of her life, had daily seizures decreased by hundreds, and had a quality of life for years that her family never expected. Sadly, the drug quit working so well for her and now she's in a full time care home, but for almost ten years she had an amazing run thanks to a Fark article.

This story about CF is the nicest thing I'll read all day. I should probably get off the internet before it destroys my happy buzz.
 
2021-07-25 1:33:24 PM  

Liinda: Kitty2.0: Sent this to a friend whose grandkid has CF. Thanks subby.

I read about Charlotte's Web cannabinoid treatment on Fark and immediately called my daughter for a friend's child. The family immediately uprooted to Colorado Springs and the little girl (I think she was six at the time) very quickly was having the first actual conversations of her life, had daily seizures decreased by hundreds, and had a quality of life for years that her family never expected. Sadly, the drug quit working so well for her and now she's in a full time care home, but for almost ten years she had an amazing run thanks to a Fark article.

This story about CF is the nicest thing I'll read all day. I should probably get off the internet before it destroys my happy buzz.


That's incredible and I'm glad they had those years together.

They may respond and say they are already aware of the treatment option but I would feel horrible if I never mentioned it. Good people don't keep info like this to themselves.
 
2021-07-25 2:00:51 PM  
My daughter's are 12 and 9 and both have DF508 CF. My eldest was diabetic last year before she started taking Trikafta and was taking 2 different types of insulin. She was also in the 20th percentile for height and weight, which is a side effect of the digestive tract issues with CF. Fortunately her lung issues were relatively mild and held in check with twice dailytreatments.

Now she is completely off insulin as her blood sugar levels have normalized, and as of last week she's in the 55th percentile for Ht/wt. She has also completed 2 clinical studies to help discover what medications CF patients can quit taking and has since come off one medication. In addition, she was on high calorie nutrition supplements and a high calorie diet for 11 years, but now her diet is normal.

All that to say this is indeed a miracle drug that will normalize her life expectancy. We are looking forward to my youngest starting Trikafta next month.
 
2021-07-25 2:06:47 PM  
I have CF and have been on Trikafta a year and a half, and I've had the same results.  I was on O2 all the time before I went on it, and now I almost never need it.  Pulmonary function went from 3% to 50%, which may not seem like much looking at percentages, but in reality it's huge.
 
2021-07-25 3:19:51 PM  
I had a boss who had CF and died about a month after I moved to a different team. She was one of my nicer bosses, and I think that's because she knew her time was limited, so why bother trying to be a corporate asshole. She knew I was depressed about that workplace and tried to tell me that I should enjoy life, and I didn't get why until she was gone. I didn't know much about what she was going through, but I noticed she was out sick a lot, and I'm glad that fewer people will have to go through what she went through.
 
2021-07-25 3:35:27 PM  

Liinda: Kitty2.0: Sent this to a friend whose grandkid has CF. Thanks subby.

I read about Charlotte's Web cannabinoid treatment on Fark and immediately called my daughter for a friend's child. The family immediately uprooted to Colorado Springs and the little girl (I think she was six at the time) very quickly was having the first actual conversations of her life, had daily seizures decreased by hundreds, and had a quality of life for years that her family never expected. Sadly, the drug quit working so well for her and now she's in a full time care home, but for almost ten years she had an amazing run thanks to a Fark article.

This story about CF is the nicest thing I'll read all day. I should probably get off the internet before it destroys my happy buzz.


Thanks for the TF, whoever gifted it. 😀
 
2021-07-25 4:40:50 PM  
This is such good news. Back in the 1980's, they'd have TV movies about "issues of the week" and the most heartbreaking one I remember seeing was "Alex: The Life of a Child" - about a girl with cystic fibrosis. It starred some big names for the time, Craig T. Nelson and Bonnie Bedelia, and it was a must-watch event in my household.

Even at around 12-13 years old, i remember blubbering like a goddamn baby at the end of that movie when the girl dies. It's just her parent's saying "We love you Alex" over and over while she passes on. It was absolutely devastating.

If anyone wants to watch it, it's still not for the faint of heart, but it holds up:

Alex: The Life of a Child ~ Cystic Fibrosis 1986
Youtube PfnNgxoRgUE


It's a shiat transfer, but that's the best I could find. The book is great, too.
 
2021-07-25 4:56:03 PM  

kozlo: Darkmeer:

Yes, the dark cynic in me says that insurance companies will fight it so that the "excess population" can fall off the rolls. But the optimist in me says that insurance companies will end up paying less for complications and ER visits that happen so often with CF patients.


At close to 30K a month, which I only knew bc of an earlier post and subsequent 15 minutes of Google research, it's hard to imagine insurers stepping up. The UK is already hesitating. But then you have to ask...why does it have to be so much?

I get they are a biz and need to profit...and amybe the ingredients or process to make the drug are expensive...but 30k a month?
 
2021-07-25 5:02:21 PM  
To all those posting that they have been taking Trikafta, or have kids taking it, curious if you wouldn't mind sharing if your insurer is paying for all or some of it,
 
2021-07-25 5:30:56 PM  

Liinda: Kitty2.0: Sent this to a friend whose grandkid has CF. Thanks subby.

I read about Charlotte's Web cannabinoid treatment on Fark and immediately called my daughter for a friend's child. The family immediately uprooted to Colorado Springs and the little girl (I think she was six at the time) very quickly was having the first actual conversations of her life, had daily seizures decreased by hundreds, and had a quality of life for years that her family never expected. Sadly, the drug quit working so well for her and now she's in a full time care home, but for almost ten years she had an amazing run thanks to a Fark article.

This story about CF is the nicest thing I'll read all day. I should probably get off the internet before it destroys my happy buzz.


Question: I know three people with CF ( one is a cousin's wife, another is a friends kids.) and they have never had seizures that I know of.  Is this common?  I thought CF was pulmonary.
 
2021-07-25 5:54:44 PM  

MizzouGuy: To all those posting that they have been taking Trikafta, or have kids taking it, curious if you wouldn't mind sharing if your insurer is paying for all or some of it,


I do get disability so Medicare/Medicaid pays for mine.
 
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