@VertexSaveUs profile picture
Vertex Save Us @VertexSaveUs

Global campaign for equitable access to all Vertex CFTR modulator drugs which can extend & save the lives of people with cystic fibrosis (CF) wherever they live

Joined October 2020
  • Tweets 2,037
  • Following 676
  • Followers 894
340 Photos and videos
Vertex Save Us retweeted
Just Treatment 💊@JustTreatment
Jan 7
The cost of meds was too high for thousands of #CF patients. We worked with @VertexSaveUs & @3rdworldnetwork to approach a Bangladeshi company to make a generic version at a fraction of the price - it’s now on the way. This will change lives. theguardian.com/society/2026…

‘We were sitting with our calculator saying “we can afford that!”’ Joy for families as cystic...

The cost of medication was too high for thousands of CF sufferers around the world. Now a Bangladeshi company is making a generic version that will change lives

theguardian.com
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🚨 BREAKING: Yesterday at #NACFC we announced the first truly affordable #cysticfibrosis modulator is here. The CF community is reviving the CF Buyers’ Club with Triko: - A generic version of Trikafta - Costs just $6,375 per child/yr 🔗 To find out more: cfbuyersclub.org
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Vertex Save Us retweeted
sandra perez@perezsam
12 Sep 2025
Una simple pastilla cambiaría la realidad de al menos 8 000000 de mexicanos y sus familias @Claudiashein @SSalud_mx @Tu_IMSS @VertexSaveUs @SSalud_mx
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💥Historic news today!💥 #Trikafta (ETI) is the first CF treatment to be added to the @WHO ‘Essential Medicines List’. We’ve worked tirelessly with academics & allies to make this possible. This listing must translate into access for all. Govt’s & @VertexPharma must step up.
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Vertex Save Us retweeted
Strawfie Challenge@strawfie
5 Sep 2025
So many years of work behind today's decision #Trikafta is on the @WHO Essential Medicines List! Well done @VertexSaveUs @JustTreatment & all the advocates/medical professionals worldwide who contributed to this ground breaking achievement Now @VertexPharma - DROP YOUR PRICES
Just Treatment 💊@JustTreatment
5 Sep 2025
🚨 BREAKING: @WHO adds #Trikafta to its Essential Medicines List – the first cystic fibrosis medicine ever included. This recognises what families have said all along: CF medicine is essential & lifesaving. Now @VertexPharma must drop patents, drop the price & deliver access.
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Vertex Save Us retweeted
Gayle Pledger@gayle_pledger
5 Sep 2025
Huge news today that Trikafta (ETI) is now on the @WHO ‘Essential Medicines List’. The first ever CF drug to be listed💥 So proud to be part of a group of academics/advocates that worked on the submission 🥰 @VertexPharma & govt’s must act now. Trikafta for all! #EML 👊💊🌎🫁
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Great to be mentioned in this paper about access to CF modulators in Brazil, following our involvement there in 2022/3. We know threatening Vertex’s monopoly with compulsory licensing is the ONLY language they respond to = lower pricing. Read more: righttobreathe.net/post/cyst… 🇧🇷

CYSTIC FIBROSIS PATIENTS & CAMPAIGNERS SECURE ACCESS IN BRAZIL

After tireless campaigning efforts by CF patients and their families, supported by Vertex Save Us and Just Treatment, it’s been announced that lifesaving CF drug Trikafta will be provided within the...

righttobreathe.net
This tweet is unavailable
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Vertex Save Us retweeted
heidi sammons 🌹@heidisammons
9 Aug 2025
Replying to @VertexSaveUs @VertexPharma @CompComSA
This is what keeps me up at night. How can there be miracle drug for those of us born with CF, yet the barrier to get it is $30,000 per month?!?! UNCONSCIONABLE
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South African #cysticfibrosis patient JC speaks about about @VertexPharma’s inhumane & inequitable ‘access programme’ that means that only the privileged can access Trikafta, while he & the other 50% are left behind. The @CompComSA must re-open their investigation now. 😡
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Today we’ve been @CompComSA to deliver a dossier of evidence showing that @VertexPharma has misled them & that 50% of CF patients in SA are still dying w/o access to #Trikafta. They must reopen their investigation into Vertex’s anti-competitive behaviour. No one left behind!
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Vertex Save Us retweeted
Just Treatment 💊@JustTreatment
7 Aug 2025
🚨 BREAKING: #CysticFibrosis families handed over a 100-page dossier to @CompComSA. It shows how @VertexPharma misled the Commission & public. Half of CF patients still can’t access lifesaving #Trikafta. We demand the investigation be re-opened. #NoOneLeftBehind @VertexSaveUs
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Vertex Save Us retweeted
Health Justice Initiative - HJI@HealthJusticeIn
7 Aug 2025
'Access for the Privileged' SA Health Advocates Demand Competition Commission Reopen Vertex Investigation 1/2 of eligible cystic fibrosis patients in public & private health sectors still cannot access life-saving drug. healthjusticeinitiative.org.… @VertexSaveUs @JustTreatment

"Access for the Privileged": South African Health Advocates Demand Competition Commission Re-Open...

The South African Cystic Fibrosis Association and HJI have tabled evidence with the Competition Commission of South Africa, demanding it re-open its investigation into Vertex Pharmaceuticals.

healthjusticeinitiative.org.za
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Vertex Save Us retweeted
heidi sammons 🌹@heidisammons
11 Jul 2025
Replying to @VertexSaveUs @VertexPharma
Dear Vertex-You are truly vile. How dare u raise prices on a life saving drug that none of us can afford? WHO has an extra $30,000 per month?!?! Signed-a CF WARRIOR
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Nothing surprises us when it comes to the greed & inhumane behaviour of @VertexPharma. Children are dying w/o access to #Trikafta due to the unaffordable price. Vertex’s response - to INCREASE the price. That says everything about their utter disregard for CF patients 🤬
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Amazing news from #Turkey today - CF patients aged 6 will have access to #Trikafta. ❤️ BUT… Why did it take 6 years whilst @VertexPharma blocked efforts to access affordable alternatives? How many young lives were lost? 😞 And 000’s globally are still waiting 😡 #CFCantWait
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It’s hard to believe what happened at #ECFC2025... @VertexPharma SHUT US OUT - three CF mums - from their "community meeting" for wanting to ask critical questions about #Trikafta access. But we didn't stop there… Read full blog to find out more ⬇️ righttobreathe.net/post/expo…

Exposing the truth about Vertex Pharma at the European Cystic Fibrosis Conference 2025

At many major cystic fibrosis conferences including in Vienna, Glasgow, Phoenix, Boston, and now Milan - Vertex Pharmaceuticals takes centre stage to promote their image. But away from the spotlight...

righttobreathe.net
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A huge thank you to everyone that came & showed their support by placing a rose at the @VertexPharma stand at the European CF Conference in memory of CF children that have died without access to #Trikafta 💔 The global CF family standing together is an incredible thing ❤️🌎💊👊
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🚨 BREAKING: today #cysticfibrosis mums stage a powerful intervention at @VertexPharma’s stand. Gayle 🇬🇧, Urtė 🇱🇹 & Ajsela 🇦🇱 laid a wreath for children who died waiting for #Trikafta. Backed by clinicians, we demand @VertexPharma act now, access for all! #ECFC2025
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Vertex Save Us retweeted
Jody65 #CFcarer@CFcarer
5 Jun 2025
Replying to @VertexPharma
@VertexPharma hiding from the truth! #Cysticfibrosis
Vertex Save Us@VertexSaveUs
5 Jun 2025
Our representatives were blocked from entering a ‘CF community’ meeting at the European CF Conference in Milan by @VertexPharma. Inexcusable & indefensible. #Trikafta4All #RightToBreathe
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Vertex Save Us retweeted
Donald M. Kreis@DMoKreis
5 Jun 2025
Thank you @VertexSaveUs for your tenacity, your courage, and your righteous indignation. Until everyone who needs CF drugs has access to those drugs, the story of cystic fibrosis remains one of sorrow.
Vertex Save Us@VertexSaveUs
4 Jun 2025
We are here at #ECFC2025 to speak out on behalf of thousands of CF families around the world that cannot access #Trikafta. 🫁💊🌎 @VertexPharma should be ashamed. #GlobalCFFamily #Trikafta4All #RightToBreathe
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