Discover and read the best of Twitter Threads about #CysticFibrosis

Most recents (15)

Please read our letter about @VertexPharma's decision to drastically cut copayment assistance. Changing the copay assistance program is akin to denying access to CFTR modulators and will lead to the deterioration of health in people with @cysticfibrosis…
@VertexPharma does not have to drastically decrease copayment assistance, yet they choose to. @Cigna @BCBSM Insurance companies do not have to include copayment accumulators, yet they choose to.
@VertexPharma does not have to charge over $300,000 annually for its @cysticfibrosis drugs, yet they choose to.
Read 6 tweets
In response to @Jeremy_Hunt's #AutumnStatement, David Ramsden, Chief Executive of Cystic Fibrosis Trust, said: "Many people with #cysticfibrosis are in a desperate situation and face a very challenging winter." (1/7)
"While it is a relief that the Chancellor has responded to our call for benefits to be increased in line with inflation, this increase needs to be implemented immediately, rather than waiting until April 2023." (2/7)
"Every day our Helpline hears awful stories, such as a man with CF who has been sleeping in his car as he was too afraid to put his heating on at home after getting into debt with his energy supplier," (3/7)
Read 7 tweets
I’m getting tired of all things published on coproduction being told only from the perspective of learned expertise and not lived expertise when the actual essence of coproduction is everybody working together on an equal basis… 1/
…to create a service or come to a decision which works for them all. Is the problem in how we are defining start and end of working together? Because when my actual blood, swear, and tears (aka lived expertise) are put into coproducing better health outcomes 2/
with a care team (aka learned expertise), I don’t consider that coproduction to end when we leave the office. I live with and think about this disease all day everyday, and am constantly thinking about working with you, for my son and for other peoples sons and daughters…3/
Read 13 tweets
My friend @G17Esiason, a patient advocate w/ #cysticfibrosis, wrote a scathing, insightful, op-ed taking Australia to task for doing demonstrably bad math to gaslight patients into thinking they aren’t worth treatment w/Trikafta. Example for all patients!…
You might think this is just Australia, but as Gunnar points out, the math Australia does to condemn patients to suffer their fate untreated is the same math that other countries have used. This math is here in the US. Some are trying to get states to adopt it.
If you are a patient with cancer, an orphan disease, eczema, arthritis… losing your sight… don’t sit by thinking this doesn’t apply to you. If you ever hear about calls for “cost-effectiveness” math being used to determine what to pay for, read Gunnar’s op-ed. @IAmBiotech
Read 9 tweets
This slanderous attack by the @PMPRB_CEPMB is an outrage. We will be sending a letter to the @OAG_BVG demanding immediate action and exploring every legal recourse in responding to @DougPMPRB's team. @JustinTrudeau and @PattyHajdu, you have let this 1/6…
charade go on for too long and need to restore confidence in Canada's ability to secure life-saving medicines. This rogue action by a government agency must be stopped. We have never engaged in "disinformation". This Trump-style attack on organizations that 2/6
try to hold the @PMPRB_CEPMB accountable is unacceptable We fight hard for access to life-saving medications for #cysticfibrosis patients. We challenge insurance, big pharma and government alike. Right now, our primary focus is on holding governments to account. 3/6
Read 6 tweets
Hey #MedTwitter!!
This morning at our VA we had Chief @photon_ick give us a case of #ChronicSOB, where it turned out that the patient had #ABPA (#allergic bronchopulmonary #aspergillosis). It's a diagnosis we don't see too often, but one you'll definitely encounter here!! 🗝️👇
This is an #allergic condition, with 2 main predisposing conditions: #asthma & #cysticfibrosis
It can be more rarely seen in other lung disease/immunodeficiencies, but without the right lung environment like this, it is almost NEVER seen!!
There is no universally accepted criteria, but the #ISHAM criteria is often used. Let's check it out!

Traditional obligatory criteria:
- Serum #IgE RAST >0.35 OR Allergic Skin Testing (+) to A. fumigatus
- Total Serum IgE >1000 Image
Read 6 tweets
Detroit. The history of my city is racially-charged and rooted in the effects of structural and individualized racism. #COVID19 exposed that. As a #SickleCell physician who cares for black patients with #chronicpain and #chronic disease, I have known that for a long time 1/n
#Detroit has the largest black community in the country (84.3%). In 1910 it was 98.7% white, but by 1930, due to the Great Migration the black community grew. The increase in diversity was perceived as a threat to the way of life and the isolation of black people began. 2/n
A terrible example of this comes from 1925, an African American physician #OssianSweet, found his home on surrounded by an angry mob; a neighborhood where he was the most affluent, the resentment from his neighbors that a black man had infiltrated, caused hate and violence. 3/n
Read 14 tweets
A #MedEd Thread for #pulm #criticalcare #applicants. How do you pick a program? What questions do you ask in a fellowship #interview? Here are some ways programs differ and tagged @IUPCCM experts to answer any questions you may have! #MedTwitter
#PAH: Does Pulm house pulmonary hypertension and manage vasodilator therapy? Or is this managed by a different department? Are there opportunities to learn this if so? @TimLahm @RFPMachado
#IP: Do you have experts performing advanced #bronchoscopy such as #navigational? Does Pulm place stents, valves? Is there #EBUS volume for general fellows to become proficient? How much of this is done by other departments such as Thoracics or ENT? @ChrisKniese
Read 13 tweets
I’ve heard so many people talk about their rights being infringed upon due to being asked to wear a mask. Your “so called” infringements on your rights by being asked to do this and disregarding it has caused Utah to have a 1/
spike in cases. It has created a situation where I and many others like myself can’t go into public places or even hang out with all of our family members.
You think this is about freedom, when in reality it is only about 2/
saving lives, thinking about others and looking outside of yourself. The frustration and sadness I have is more than I think I’ve ever had to deal with. Putting trust in others to help protect my health and seeing them 3/
Read 8 tweets
The @icer_review, whose goal is socialized medicine, just published an opinion literally saying that even if the miracle drug, Trikafta, was a cure for #cysticfibrosis (its not but closest we have) that even then it wouldn’t be worth the $$$ to treat my kids. #numbersthatmatter
How dare this unelected agency determine how much money my children’s lives are worth. If Trikafta extends one of my kid’s lives for a SINGLE day, it would be worth it.
This board is modeled after NICE in the UK which hs been denying #cysticfibrosis patients drugs my children in the US have had access to for years. Drugs that are expensive but we know will extend life.
Read 4 tweets
Just sat through one of the most surreal speeches of my 4 years in parliament after Boris moved a motion to end this zombie parliament through a General Election on December 12th...
The Leader of Her Majesty's Loyal Opposition (Jeremy Corbyn) urged the Prime Minister to deliver the programme outlined in the Queen's Speech that he and Labour had just voted against...
Corbyn complained about Channel 4 claims that govt had talks with US pharma companies about the price of drugs despite recently demanding that @MattHancock intervene about the price of #Orkambi, a groundbreaking drug treating #cysticfibrosis supplied by a US company...
Read 12 tweets
👀You'd never think these are #lungs but that's what they are LUNGS!
They belonged to Tiffany Senter, 25, who was born with #cysticfibrosis, a rare genetic disorder that mostly affects the lungs.
. Image
Tiffany had her first double lung transplant at 17 but her body rejected those lungs after four years. She waited another nine months for another pair of lungs and during the three she was confined to a hospital bed.
Now her second donor lungs are beginning to fail and Tiffany is not eligible for a third transplant.
But she still plans to become a makeup artist and is grateful for the seven years her two donors have given her.
Read 5 tweets
#FiveFeetApart #FiveFeetApartfilm
If you're excited for this film and the awareness it "will" bring, ask @justinbaldoni what he and the team were thinking when they thought this was a good idea.
#CysticFibrosis /1
#FiveFeetApart #FiveFeetApartfilm
It's so sad these people are far away from loved ones, but how dare they pretend for a moment that their experience even closely resembles mine or any other #CysticFibrosis patient's?
#FiveFeetApart #FiveFeetApartfilm
Seriously, I was briefly excited for this film, but the critics in the #CysticFibrosis community were 100% right.
This movie is not for us.
It's not even representation of CF
This movie is a money grab at our expense, because Hollywood.
Read 8 tweets
Twitter Service Announcement: I'll be tweeting pharma updates on #CysticFibrosis for next ~hour while $VRTX holds earnings conference. #VRTX
From press announcement so far, two new points: 1) sNDA for Symdeko for 6-11 homozygotes submitted to FDA late 2018; 2) $VRTX received voucher to get priority review in future. Wondering how they will use this? To get triple first in line? 1/
2/ From Q&A: Keep finding better and better molecules--lots out there to find a safe and amazing triple that benefits both homozygotes and het-mins.
Read 8 tweets
My hero, #WilliamGoldman, died earlier today. Let me tell you a story about how he befriended a sick girl who wanted to be a writer and gave her hope. This is a cool and true story and I’ll always be grateful.
When I was 16, I stopped doing my #CysticFibrosis treatment. I was sad and depressed. Then I saw #PrincessBride while at a birthday party, and it changed my life. It became the only thing that got me through treatment at night.
After homework was done, my mom and I would settle in and watch PB. I read all his novels too. #thesilentgondolier is the best other one.
Read 18 tweets

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