#cystic fibrosis fighter

[kaixcastiel27]

My story that I'm writing, Between Two Worlds, original called Inspirtional Jounery, may have cancer (Lung cancer) or cystic fibrosis, so I am asking all cancer survivors and Cystic Fibrosis fighters to let me know some of your expreiences and struggles with cystic fibrosis or cancer.

Also I can't pick out a cover, which one is your favourite out of these three covers?

#tumblr polls #creative writing #writers #writers community #writing #writerscorner #books and reading #cystic fibrosis #cancer #cancer survivor #cancer survival #cf #claire wineland #inspired by #the fault in our stars #five feet apart #novel cover #novel writing #books & libraries #book writing #writers on tumblr #writerscommunity #book cover #i can't choose #lgbt #lgbt pride #lgbtq positivity #lgbtq community #lgbtq #lgbtqia

[littleguydefender]

IC INFO

NAME: grace cardinal. FACECLAIM: auli'i cravalho. AGE: 19. YEAR IN SCHOOL: sophomore. 2 POSITIVE TRAITS: steadfast and just. 2 NEGATIVE TRAITS: blunt and pessimistic. AESTHETICS: messy sheets and an unmade bed, empty water bottles, building your own computer in your spare time, pill boxes on your nightstand, ripped jeans, worn out converses, chipped nail polish, unanswered texts, graphic tees, oversized hoodies, coughing up blood into tissues and hiding them from your loved ones, a resting bitch face that could kill a man

EVERYONE’S GOT SOMETHING TO HIDE, WHAT’S THEIRS?

I hack into the system and change grades for money.

HEADCANONS.

the main difference between canon grace and this grace is shes a lesbian bc lbr for a second.

though she can be mouthy and blunt, grace isn’t a physical fighter.

she’s had cystic fibrosis her whole life which made her miss a lot of school growing up, labeling her a truant and giving her a bad kid rep.

while she had accepted she’d be most likely dead at 25, grace found a new lease on life and finally decided to have herself added to the lung transplant list.

after an experimental treatment gone wrong, her quality of life has suffered and her name’s been moved up the list. she’s currently sitting at number 27. she’s expected to get new lungs in about a year from now.

she goes by thew4tch3r online when she wants to be anonymous.

yes shes familiar w the dark web and no she won’t show anyone how to access it.

because of her CF and her energy levels constantly fluctuating, grace has switched to mostly online class. she only has one in person class just to keep her from going stir crazy. 

she’s currently a major in computer science.

she’s a gamer. she loved puzzles and board games growing up. it’s one of her favorite ways to pass the time and always has been.

she’s currently building her own computer.

she lives at home still.

on days where its very difficult to breathe, grace will carry around a portable oxygen tank.

she doesn’t drink or smoke but she will take an edible.

CONNECTIONS.

exes.

people she’s changed grades for or even done some hacking for.

gaming buddies.

an online relationship.

friends.

anything!

[lovelivejustbreathe]

Cystic Fibrosis Fighter, Cochlear Implant Wearer, Double Lung Transplant Survivor

Thoughts on living and second chances from the heart and brain of someone with a terminal genetic illness who near death was suddenly gifted the ability to hear, breathe, and ultimately live. 1988 cystic fibrosis 2010 double lung transplant 2014 cochlear implant

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#cochlear #Cystic Fibrosis #Life #lung transplant

[ovaryacted]

Okay I just saw your sick!reader imagine thing and literally tearing up. Although, I don't have cancer, I have cystic fibrosis, and with that, I gained 2 diseases and 1 illness, and it makes life sad and reading that Leon would take care of and would take a bullet for his sick s/o, it melts my heart cause I would just ball in his lap and tell him how much I love him and how he takes such good care of me.

Oh my god anon, this was such a meaningful message, thank you for telling me this. I'm glad that my little blurb made an impact on you, truly. 🥺 This is why I write, so people can get some comfort in imagining their favorite characters doing things they love to them and with them.

I'm so sorry you're dealing with cystic fibrosis, I know that's a pain in the ass to deal with and manage especially with the way healthcare works sometimes. It's debilitating, it's harsh, and frankly, it sucks. Though I may not know the intricacies of what a condition like that entails, just know that you're a fighter and that you're more than your illnesses. As for Leon, he would do everything and anything to comfort you however you so chose to.

Your pain is his pain, that's how he views things, so if you want to ball up in his lap and tell him how much you love him, he'd absolutely let you while running his fingers over your skin and just caressing you. He's your safe space and he's happy and grateful that he is. At the end of the day, no matter what happens, he'd still choose you. In sickness and in health right? That's the selfless type of man he is.

#ovaryacted asks

[themotherlove]

#themotherloveshow #NicholasKelly #DrMotherLove

[mycfstory]

My Medications! (12.03.19)

This is more so just to help me keep track, but also to let people know how many medications people with CF take. Please keep in mind that I am newly diagnosed, and most people with CF take many more medications than me.

Morning:

- Sertraline (150mg): antidepressant

- Symbicort (200mcg): inhaler for lungs

- Omnaris (50mcg): inhaler for sinuses

Evening:

- Novo-Ferrogluc (35mg): iron supplement

- Stmbicort (200mcg): inhaler for lungs

#cystic fibrosis #cf #medicine #medication #illness #fighter #still i rise

[wheniwasyoungiwasamermaid]

I have been so ill lately due to my cystic fibrosis, the belly pain is unbearable at the moment and have been for the last 2 days. I can't even stay awake a whole day anymore, I need a nap in the afternoon to get me through. but yesterday I managed to do my makeup and go out for a few hours to watch the shooting stars. I will not let you get me down cf. You can fuck right off.🖕

#cystic fibrosis #shooting star #night out #happy #pain #smiling #i am a fighter #instant folllow back

[tenille-arts]

tenillearts: This was such a special moment. A couple years ago I released a song written by Matt Scales called “Breathe”. (100% of all proceeds go to CF Canada). Matt had Cystic Fibrosis and shared his story through this song before he passed away in 2007. That is the harsh reality of this disease, and I breaks my heart that there is still no cure, but events like this give us so much hope. Cassidy, like many of the people I know with CF, is a fighter and so is her family. @kimberly_celebratingsimplelife asked me to be a part of her SOAR for Cystic Fibrosis event in Saskatchewan and I jumped at the opportunity to perform. Cassidy and I sang “Breathe” together, and she sounded so amazing. I loved watching her shine and I can’t wait to share the video from this night!! 🌟 #SOAR #cysticfibrosis #findacure #moosejaw

#tenille arts #social media #2018 #may 8

[hopeless-island]

Dying Dream Cast Directory

A helpful guide to remind you about the main crew of the Hopeless Pirates and their basic info stuffs. Keep in mind, names are done the Japanese way. So, Last name/middle initial/ first name

Also, there are spoilers in here for all people who are not caught up with the story. Read at your own risk.

Captain: 

Gol D. Maven 

Nickname/known as: Maven/ Usurper Maven/ “Momma Maven”/ Big Sis Maven

Age: 20 (at the beginning of Canon)

Disease: Usurper’s Syndrome. A terminal illness that is continual, and progressively aggressive, muscle degradation. Combats this disease by building muscle faster than it can degrade, leading to painfully slow increase in strength and low muscle mass on her body.

Appearance: Like a gender-swapped Ace essentially. Small chest, much wider waist than typical for OP characters. Clearly defined abs, lithe but defined muscles on arms and legs. She is not thickly built, her disease keeping her from being “bulky” and making her body remain rather lanky despite the strength on it. About 6′1″, long wavy black hair that goes down to her butt and is extremely wild and untamed. Freckles on her face that add a slight childish appearance to her face, and sleepy looking gray eyes. Always carries Stormfall, a large battle axe/halberd with a purple metal butterfly-winged blade. Stormfall is over six and a half feet tall, so the blade is always poking above Maven’s head a bit. 

First Mate:

 Nymph Katylan

Nickname/Known as: Katie/ Dark Nymph Katylan

Age: two years younger than Maven. 

Disease: Unnamed terminal immunodeficiency, alluded to being like AIDS. 

Appearance: Stereotypical blond rich-girl appearance. Classic OP-girl physique, with large bust and small waist. Straight gold-blond hair that falls a few inches past her shoulders, and large sapphire-blue eyes. Commonly wears light colored sundresses with exercise shorts underneath just incase she fights, so there is never an indecent moment. She is also the Helmsman and Archer for the crew, and uses an ivory-white recurve bow made by Kilik.The center of the bow can change lengths, controlling the strength and range of the bow. Average female height of about 5′7″

Navigator (Original):

Linral

Nickname/Known as: Rabid Linral/ Lin

Age: 18 at death

Disease: Unnamed cancer, alluded to being more than just one type as it is “everywhere.” 

Appearance: Short tomboy, but with classic OP-girl body. She had short silver-white hair cut in a boyish pixie cut, and bright emerald-green eyes that she took pride in. Her body was littered with small scars, though not so many as to keep guys from blatantly trying to flirt with her. As stated earlier, she was very short-- just barely over five feet tall. Primarily a brawler, she had slightly more defined muscles than even Maven, considering Lin’s own disease didn't effect her muscle mass. Usually wore boy’s sports shorts and a grey or black tank top.

Weaponsmith (Original):

Kilik

Nickname/Known as: Kilik/ (I couldn’t remember/find his pirate name, so I made a new one up) Killing Steel Kilik

Age: 21 at death

Disease: Due to being unwillingly experimented on, his body developed the ability to produce its own organic poison straight into his own bloodstream. It never stopped his production, and production sped up over time. Too high of a concentration, and it would be fatal. 

Appearance: About 5′10″, with fluffy cinnamon-brown hair that is on the long side, almost brushing his shoulders, and chocolate brown eyes. He is somewhat lanky, not muscular but with his own brand of lithe strength. Overall boyish, with most of his muscle mass being centered in his arms without being bulky, because of his occupation as a blacksmith. Also a swordsman. Known for creating a bunch of really wacky, weirdly-designed “swords” and other weapons in an attempt to find his own unique sword style. He finally did, after making round “swords” in the shape of clocks. Usually wore a simple black or mustard-yellow t-shirt and dark jeans with brown or denim overalls. 

Doctor: 

Razdall 

Nickname/Known as: Raz/ Misery’s Herbalist Razdall

Age: 24 at the start of Canon

Disease: Unnamed heart condition, makes him extremely susceptible to spikes in blood pressure and heart rate. Weak heart. 

Appearance: About 6′0, with short but messy purple hair. Gray eyes the same shade as Maven’s, but instead of having narrow eyes like she does his just look perpetually bored. His body is pretty lanky, and since he isn’t a fighter he doesn’t have much muscle mass at all. he has a slight, perpetual slouch and usually wears a black or dark purple turtleneck with black, slightly baggy pants and a lab coat with the Hopeless Pirate jolly roger on the back.  Never seen without a utility belt laden with different pouches, orbs, and syringes full of his battle-ready herbal concoctions.

Seamstress:

Yalla

Nickname/Known as: Yalla/ Pretty Ninja Yalla (at least I think that’s what I went with as her pirate name... I can’t remember/ find it >.<) 

Age: 15 at the start of Canon

Disease: Assassin’s syndrome. Similar to Usurper’s, but instead of muscle it is a constant degradation of organs in the body. 

Appearance: A cutsey girly-girl, she has bubblegum-pink hair and bright golden yellow eyes. Originally she wore her hair up in constant long pigtails, but she started to wear it down after Kilik’s death. It reaches her knees when left down. She usually wears a frilly pink, gold, and black kimono that is cropped around the knee with sunflower-yellow boy shorts underneath incase any incidents occur. The kimono has three-quarter sleeves instead of the traditional long sleeves. She pairs it with flip-flops or goes barefoot. Still growing, she is relatively short at about 5′4″. She ate the Ribbon-Ribbon fruit and grew up as an acrobat in a circus, so she is not only very nimble and usually fights aerially, but she can turn her body into ribbons. 

Shipwright:

Gino

Nickname/Known as: Gino/ Black Thorn Gino

Age: mid-thirties by Canon

Disease: Akui Hanahaki. Like the Hanahaki in other stories, this disease grows flowers in and off of the victim’s lungs, causing them to hack up flowers and leaves from it as the disease progresses. Unlike the normal mythical disease, this one is caused by hatred from a loved one rather than unrequited love. The only cure is being forgiven, but the person whose hatred caused Gino’ s illness is dead so it is officially terminal for him. He coughs up black roses. 

Appearance: A large tiger-shark fishman, he clocks in at about 7′7″ and has greyish-blue skin with subtle grey stripes down his back and the back of his bald head, and partially over his shoulders and the back of his upper arms. Usually wears a black or dark grey tank top and black cargo pants or cargo shorts. He fights with spiked iron knuckles, and (spoiler alert) gets them upgraded to Seastone spiked knuckles after the Magician arc. He is very bulky, unlike the majority of the crew. Classic body of a thug/body builder type, with bulging biceps, very well-muscled chest/torso, and several tattoos. 

Dancer: 

Synalla

Nickname/Known as: Synalla/ “Crew Grandma”/ Slice-Dancer Synalla 

Age: Late twenties by Canon. About 28 or 29..?

Disease: Unnamed lung disease. Fashioned a bit after Cystic Fibrosis, but obviously made into a fantasy terminal illness. 

Appearance: She is a Snakeneck, and from her feet to the top of her head she is about 11′4″, with her neck by itself taking up almost half of that. Her body, like with most Snakenecks, is naturally lithe and lanky. Her hair is jet black, and goes down the entirety of her over-four-foot neck in sharp zig-zags that for some reason never lose shape. She dresses like a tango dancer almost constantly, in long brightly colored Mexican-styled dresses that end at her ankle and matching flats. She fights with tessen, or bladed war fans. She dances with them, too. She is naturally maternal and tends to mother hen, earning herself the nickname “Granny” or “Grandma” within the crew. 

Scout/ Navigator (new): 

Cala

Nickname/Known as: Cala/ Lynx Cala 

Age: about 26 by the start of Canon

Disease: Nature’s wrath syndrome, another disease similar to Usurper’s and Assassin’s syndrome. This version is constant degradation of the bones and severe calcium deficiency/the body burns through calcium at a really fast rate.

Appearance: Is it even a surprise by now? Cala is lanky, as apparently most of the rest of the crew omfg where is my originality at? But to the point of being almost bony. He has very short-cropped blue hair, buzzed but not shaved. He ate the cat-cat model: Lynx fruit, and can change into a lynx. He is incredibly frail because of his disease and tends to stay out of fights unless absolutely necessary (I have bones of glass, and paper skin...) But he makes an excellent scout and spy with his enhanced senses from his Zoan fruit. He, uh. honestly I haven’t put much thought into his wardobe. He’s a bony cat dude. Probably wears long blue basketball shorts and goes shirtless half the time honestly, idk. 

Crew Hypnotist..? I honestly don't know this guy’s role, I think he’s just a combatant/ bums out on the Dream honestly. 

Dyan

Nickname/Known as: Dyan/ King Dyan/  Deranged Prince Dyan (Pirate nickname)

Age: idk if I put a solid age for him, but he’d be about 40 by the start of Canon

Disease: Similar to Kilik, Dyan’s blood itself is mutating and becoming toxic to itself. There is no known cure. 

Appearance: He ate the child-child fruit, so he looks to be about 10 years old instead of his true age. He has spiky dark green hair, and is about 4′3″. He has a child’s body, so no real visible muscle mass or anything. He did used to be the King of the Ceres kingdom though, so he is constantly dressed in high quality clothes and somehow always looks like a stereotypical child prince/ rich brat. His devil fruit hypnotizes people along with making him stay in a child’s body, but you can read more about his devil fruit in the story itself. 

Magician

Azalea

Nickname/Known as: Azalea/ Scarlet Magician Azalea

Age: I don’t remember if I gave her an exact age, but we’ll say 23 by Canon

Disease: Cancer (sound familiar? (;)  Cured by Trafalgar Law. 

Appearance: about 5′9″, with bright, vibrant red hair in an asymmetrical pixie cut that she is just now beginning to grow out. Classic OP-girl body, but with muscular legs that most people seem to not notice. She is a magician, and as such is always wearing a maroon suit jacket, black slacks, and a bowtie. She has a flair for the dramatic. whatever she wears, she is always stylish. She does, in fact, have a magic wand that she uses occasionally. sporty-cute-girl. OH yeah, she has the feel-feel fruit and can sense everyone’s emotions and shit

I think that’s it for the Dying Dream crew. Whoo that took a while. There ya go!

[snowe-zolynn-rogers]

Remus Sanders Text Posts 17/?: Cystic Fibrosis Edition

Image Descriptions Below

[One: Fighting chronic illness is exhausting.

Two: That chronically ill feel when you just HAVE to be laying down and your body won’t accept anything else.

Three: When you don’t want to sleep because you’ll just wake up coughing.

Four: Just CF feels *Everything makes you cough. The cold? Makes you cough. Laying down flat? Makes you cough. Laughing? Makes you cough. Thinking about how you haven’t coughed in 5 minutes so maybe it’s done for a while? Makes you cough. *Realizing you forgot to take your pills five hours too late. *“You’ve had to have blood draws so many times already you should be used to it stop CRYING!” *“You’re in the hospital?!?!?! Oh no!!!!” Nah fam this place is my second home whether I like it or not. *Cancelling plans because you realize you have to do your breathing treatments. It’s too late to do them before you go and if you save them for after, you’re going to forget. *Coughing so much and so violently that you’re scared to breathe. *That look of pity people give you when they find out what Cystic Fibrosis is and that you have it. *Being treated differently just for having CF. *Thinking you’re pretty strong physically but when you work out with other people, you can’t keep up. *Realizing the burden you’ve put on your family and friends just by existing and crying yourself to sleep.

Five: Friendly reminder that chronically ill bodies are beautiful too! All of them! No matter the size, shape, scars and medical instruments!

Six: Ugh, so many fuckin pills.

Seven: *game show host voice* It’s time for another round of: Is this anxiety or is it lung pain?

Eight: To all my guys and gals and nonbinary pals out there with CF because i never see anything like this for you guys: Your oxygen doesn’t make you weak. Breathing treatments don’t make you weak. Your blood draws don’t make you weak. Winding up in the hospital doesnt make you weak. Cancelling plans because it’s just too much doesn’t make you weak. Your face mask doesn’t make you weak. You’re a fucking fighter and I’m so proud of you.

Nine: It’s probably no consolation but… If it doesn’t help me literally or emotionally DONT FUCKING SAY IT!! I am so sick of people trying to make me feel better about my chronic illness by telling me how much they are suffering or how it’s the circumstances/weather adding to it! You having a headache doesn’t cure my sinus infection.

Ten: Love that I get the strangest looks for wearing a face mask at the hospital. Like if I wear it in public, some people get weird, but if I walk into a waiting room at the hospital with one on (because I know they aren’t going to let me wait in a separate area like they’re supposed to and I want at least a little protection) and everyone just loses their shit. Literally, a woman in the corner whispered “oh, she’s sick” when I sat down. This is a hospital. Y’all are sick too. THATS WHY IM WEARING IT.]

#sanders sides #cf remus #remus sanders #sanders sides text post #text post meme #i did a thing #i love my smol stinky sewer trash son #please love him #💚 #cystic fibrosis #i hope i did good #feel free to scream at me if i didn't

[leahtate1228]

Five Feet Apart

The CF community is divided on a new issue in the world of Cystic Fibrosis. Funny enough what the community is divided on now has nothing to do with taking their treatments, or being in the hospital but rather it is about going to the movies, specifically to see Five Feet Apart. Yes, Five Feet Apart, the new Hollywood movie featuring two teenagers, battling Cystic Fibrosis. I think I first heard about the possibility of a movie being released about CF sometime last year and I remember initially feeling really excited about it. CF in the general population is such a small community, I still meet people everyday in my adult life that have never even heard of it so the thought of a major motion picture bringing light and awareness to this disease was amazing! I will say I personally have not seen the movie and am unsure if I will. I did however read the book. My honest review of the book is it romanticizes having Cystic Fibrosis and what it’s like to be in the hospital for weeks or months at a time. Without spoiling anything there are certain things these kids are able to do, places they are able to “explore” in the hospital that absolutely would not fly in an inpatient setting. I think it is probably good for the “general” viewing audience of teenage girls or families that want to go to the movies to see a romantic film or heartfelt story on a Saturday night. I think the very fact that this movie defines and makes you understand that CF Patients have a “6 ft. rule” and by labeling this movie as “Five Feet Apart” and releasing it in public movie theaters  rather than a Netflix release speaks to the true lack of understanding that makers of the film have about this disease. With that being said, as someone living every single day with this illness, and knows the real risks of cross contamination that the movie only touches on, I will not be venturing into any movie theater to see a movie focused on the battle of Cystic Fibrosis. I have been fighting it for 25 years and I will continue to fight it, but I will not play risk with my health when I can wait for it to come out on Netflix or DVD. I respect all other opinions and views of Five Feet Apart and I commend CBS Films for taking the risk to air a movie publicly on such a sensitive topic for just a small few of us fighters.

Peace. Love. Cure CF.

#cf #cysticfibrosis #five feet apart

[cobaltsdream]

Claire Wineland

I never thought I'd see the day that Claire would pass. She was such a big inspiration to many, including me. Having a chronic illness changes your life tremendously. She was a great fighter when it came to cystic fibrosis. She informed others about it and made an impact on the world. There's no doubt that her foundation will keep forward. I'm glad I found her when I did, she inspired me even before I had any hope for a diagnosis. Her and many others have helped me now that I have to live with a new way of life.

Thank you Claire.

#claire wineland

[suicidalrattt]

Leading 15 Ideal Totally Free Online Mobile Games 2015

crusaders of light cheats

The Pepster app supplies breathing treatment for cystic fibrosis in the type of video game, making use of a patient's breath as the controller. There are additionally plenty of applications that utilizes the core functionalities of the mobile phone such as video clip, sound, and electronic camera to give mobile apps growth with capability to transform your phone as an instrument to explore the globe. These collection of cost-free mobile applications can be very useful for the mobile users though it might not please all the needs of specific or business individuals. Just the means video game app customers are selective concerning the video game apps, the businesses additionally have to be just as selective when it pertains to the choice of application idea, video game app growth devices and also app development company to engineer extraordinary experiences.

5. But the principal benefit of performing mobile app growth using the J2ME system is that it offers a smooth user interface together https://crusadersoflighthack.club/ with graphics, highly improved networking abilities, and also permits reduction of navigation throughout an application. This movement system is a. great starter for developers as it comes really convenient with various pre-built applications. While it's not a complicated video game, Flip Skater is excellent for those times you intend to get in, play some games and also venture out. This is an integrated, cross-platform mobile application advancement platform that is commonly being utilized to create global mobile applications. In the game you play on-line with various other gamers as a ferocious black hole who feasts on every little thing visible. However, with the modern technology evolving with each passing day, the popularity of mobile video games is expected to break all the previous records.

Tablets as well as smartphones have myriad of sensors, accelerometers, electronic cameras, touch and pressure sensing units and likewise heart price displays, all of which can be used by mobile applications to report and accumulate information concerning the experience of the user. Regrettably the game is no longer in energetic growth however has actually gone open-source ensuring the game will certainly continue to live on. While the lack of advancement does imply you will not be seeing way too many brand-new functions Epic Creator has all the core features you require for a pleasurable experience as well as one I still play every so often. With making use of a common C# codebase, mobile designers can properly utilize Xamarin to develop native apps for several systems. Essentially these functioned surprisingly well as well as large brand names like Street Fighter, Person Kombat, and King of Fighters provided strong battling experiences for mobile gamers.

[speersport]

Cancer Survivor Aaron Aby Hopes To Inspire Others With MMA Journey

Cancer Survivor Aaron Aby Hopes To Inspire Others With MMA Journey

Cage Warriors fighter Aaron Aby wants his journey of ups and downs to eventually lead to a shot in the UFC—and he wants to inspire onlookers every step of the way. Aby, a survivor of stage-three testicular cancer and a fighter living with cystic fibrosis, wants his story to show that people can overcome big obstacles in life. Growing up, Aby was warned that his cystic fibrosis diagnosis could…

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#mma #mma 2021 #mma berlin #mma core #mma fighter #mma fighting #mma handschuhe #mma münchen #mma news #mma spirit #mma training

[atlanticcanada]

Frustrated cystic fibrosis patient speaks out after drug coverage denial

Twenty-eight-year-old cystic fibrosis patient Stefan Strecko says he went from jubilation to devastation in just two short weeks, after trying to access a ground-breaking CF drug, Trikafta.

"The drug was essentially pulled out from under me," he says. "I was led to believe I was approved, for something I've been waiting 28 years for."

A 2020 study by researchers at Dalhousie University suggests Trikafta can extend the lives of CF patients and reduce the severe effects of the fatal genetic disease.

The drug was approved for use in Canada in mid-June.

Soon after, Strecko says he checked his Canada Life private health care plan to see if it included Trikafta. He was elated when he says the website indicated he had complete coverage – for a medication which costs roughly $360,000 a year.

Strecko ordered a month's supply after he says several discussions with the insurer confirmed he wouldn't need prior approval.

But when the drug arrived, something went wrong.

"I was told now I needed a pre-authorization form due to the cost of the medicine, and then that pre-authorization form, was denied," he says.

A letter from a third-party claim evaluation group – an independent group of pharmacists called FACET Program under Cubic Health Inc., states in part:

"…despite being a transformative therapy, until the price set by the manufacturer is in line with the health benefits it provides, we are unable to approve this request."

So now Strecko says his medication -- about $25,000 worth- is sitting on the pharmacy shelf.

In an email statement to CTV News in lieu of an interview, a Canada Life spokesperson writes, "Private payer drug coverage varies by plan and is sometimes administered by a third party, in this case by Cubic Health... we've been in communication with the client about his claim and to explain our processes."

The CEO of Cubic Health Inc., Mike Sullivan, also wrote CTV News, stating that it looked at a independent assessments of the drug's cost-effectiveness for its decision, "such as the one conducted by The Institute for Clinical and Economic Review (ICER) in the US, (sic) Trikafta required a very significant price reduction before it could be meet its minimum cost-effectiveness thresholds."

That rationale, says Strecko, doesn't make what happened any easier to take.

"This was supposed to be one of the biggest moments of my life," he says with tears in his eyes, "and it was just taken away from me."

Strecko's case, say cystic fibrosis awareness groups, illustrates the importance of encouraging provincial governments to include Trikafta in public prescription drug plans.

The founder of "CF Loud", one such advocacy group, says Trikafta saved her life after she gained access to it last year through the manufacturer's compassionate access program.

"It meant being able to put aside a lung transplant," says Stephanie Stavros from her Pickering, Ont., home.

She's concerned a recent draft Canadian Health Technology Assessment from the Canadian Agency for Drugs and Technologies in Health (CADTH) – recommends only limited coverage of Trikafta.

Cubic Health's Mike Sullivan says the lack of "supportive Health Technology Assessment information in Canada" was part of the reason Strecko's request was turned down.  

"Our hope," says Stavros, "is that CADTH removes the current restrictions that are blocking this medication for a certain section of patients."

In Nova Scotia, a spokesperson for the Department of Health and Wellness tells CTV in an email: "The Pharmacare coverage process in Nova Scotia will continue as quickly as possible once Trikafta has received a positive final recommendation for public coverage via the CADTH Common Drug Review process."

A boxer, Strecko is a fighter by nature and isn't giving up.  He's making the case to his insurer that the drug's life changing potential, outweighs any cost.

from CTV News - Atlantic https://ift.tt/3rLpQKs

#new brunswick #prince edward island #nova scotia #news #politics #canada #CTVAtlantic