urte_g

CF mom, CF advocate, Right to breathe campaign member

[urte_g @g_urte]

@VertexSaveUs helped us to make this happen!!! Kaftrio will be finaly reimbursed in Lithuania!! After such a long battle we finally have a hope for a better tomorrow….

[Vertex Save Us @VertexSaveUs]

🎉 #RightToBreathe victory!

After months of relentless campaigning led by #cysticfibrosis families, access agreements for lifesaving treatment have now been reached in Estonia & Lithuania 💊🌍

Here's what Lithuanian CF mum Urtė said about this news ⬇

[Vertex Save Us @VertexSaveUs]

It’s not only #cysticfibrosis patients in low income countries that can’t access #Kaftrio #Trikafta because of the price tag 💵

We’ll be at @ECFSConference next week for patients like Lukas #Lithuania who continue to suffer.

Shame on you @VertexPharma

https://t.co/iiUioCL3J5

[Vertex Save Us @VertexSaveUs]

We are in Glasgow this week at #ECFS2024 to highlight the plight of thousands of #CysticFibrosis patients around the world who do not have access to lifesaving medicines because of the extortionate price tag. 🫁💊🌍

Together we will be heard. #Trikafta4All @JustTreatment

[Vertex Save Us @VertexSaveUs]

VSU CF mums & supporters have been speaking out at the European CF Conference in Glasgow to insist that @VertexPharma lowers their unjustifiable price for #Trikafta and stops holding sick children to ransom.

Enough is enough. 🫁💊🌍

#RightToBreathe #Trikafta4All
#CFWontWait

[Vertex Save Us @VertexSaveUs]

#NACFC2023 Following Jonathan Guo’s presentation on equitable access to modulators, with emotional testimony from Lithuanian CF mum @g_urte, audience members waited to have their say, including: (1/6)

[urte_g @g_urte]

I had a short speach at #NACFC2023 as a member of @VertexSaveUs about not having gene modulators in my country #lithuania because of their high price @VertexPharma has set. My 3 year old daughter Milda is condemned to a slow and painful death without these drugs.
#righttobreathe

[urte_g @g_urte]

My daughter with CF has no access to gene modulators! @VertexPharma how many billions is enough?!

[Just Treatment 💊 @JustTreatment]

🚨BREAKING: US drug giant @VertexPharma has just been called out by #RightToBreathe campaigners over its scandalous drug pricing.💊

How many billions is enough?

We demand that lives are put before profits.🌍 #NACFC2023 #CFcantwait

[Vertex Save Us @VertexSaveUs]

@DrMeghanMcGarry - saying it as it is: @VertexPharma: not normal behaviour…record breaking profits…not putting $ back…$3b stock buybacks…serving shareholders… using the CF community…copay changes…no one can afford these drugs…Vertex don’t care…we need to speak out.👊💊🌎

[Just Treatment 💊 @JustTreatment]

The action was led by 3 #cysticfibrosis mums - Gayle (UK🇬🇧), Pratibha (India🇮🇳) & Urte (Lithuania🇱🇹) - who travelled across the world to confront Vertex.

They brought dozens of messages from CF families urging global access to meds. @VertexPharma, are you listening?"

[Vertex Save Us @VertexSaveUs]

BREAKING: Today VSU representatives were at @VertexPharma offices in Boston to deliver heartbreaking messages from CF families around the world who cannot access #Trikafta b/c of the extortionate price tag.

Enough is enough! Every patient everywhere has the #RightToBreathe.

[Vertex Save Us @VertexSaveUs]

Urtė from #Lithuania spoke about life without access to modulators for her daughter Milda.

The reality is so powerful that some audience members were moved to tears. 😢

@VertexPharma must change their ways & provide access to all. #RightToBreathe

[Vertex Save Us @VertexSaveUs]

We are at #NACFC2023 in Arizona.

Raising our voices for CF families around the world that don’t have access to #Trikafta & other modulators.

Taking a message to @VertexPharma that their profit driven behaviour is not acceptable. We will not stay silent.
#Trikafta4All #NACFC

[Just Treatment 💊 @JustTreatment]

📢 Last week at the #ECFS2023, @VertexPharma faced unprecedented pressure from the #RightToBreathe campaign.

Patients, parents & clinicians were united in a call for affordable access to lifesaving #CF meds. The silence is broken & the tide is turning⬇️

https://t.co/Ji0VFbclWq

[Gayle Pledger @gayle_pledger]

#ECFS2023 @VertexPharma session - real-world study - #Trikafta for children age 6-11. Challenging Vrtx on access to #cysticfibrosis medicines in LMICs. “Clinicians and families in those countries would also like to see these results”. We need a global access plan NOW #CFWontWait

[Vertex Save Us @VertexSaveUs]

#ECFS2023 After 3x @VertexPharma talks about the effectiveness of #Kaftrio. VSU mum @g_urte from #Lithuania joins CF researcher Jonathan Guo to talk about life w/o access to CF modulators. So powerful ❤️. One attendee said this was “the best presentation at the conference by far”

[Vertex Save Us @VertexSaveUs]

Dr Marco Zampoli, from #SouthAfrica CF advocate & VSU supporter, presenting at the European CF Conference today, outlining the unacceptable disparity in access to #Trikafta #Kaftrio around the world. #RightToBreathe

[Vertex Save Us @VertexSaveUs]

Day 2 of the European CF Conference in Vienna - we are here to highlight the disparity in access to #Trikafta #Kaftrio and speak up for all those countries without access. Enough is enough. #RightToBreathe #NoOneLeftBehind

[Just Treatment 💊 @JustTreatment]

The European #CysticFibrosis Conference has kicked off today in Vienna! 🙌

We're excited to speak to CF clinicians & advocates about our #RightToBreathe campaign for global access to lifesaving CF treatment. 🌍

Find out more ⬇ https://t.co/gVHcpjlnn6
#ECFS2023 @VertexSaveUs

[Just Treatment 💊 @JustTreatment]

Lots of support already for the #RightToBreathe campaign at #ECFS2023!

Thousands of #cysticfibrosis patients are being left to suffer & die because @VertexPharma is charging $326k for lifesaving treatment.

This must change. #CFcantwait

Find out more 👇
https://t.co/PaYGhFITHJ

[Strawfie Challenge @strawfie]

If you have been following the 'Right To Breathe' campaign over the past few months, then it is now easier to keep up with the latest developments and connect with the campaign via this vibrant new website ⬇️

https://t.co/5DbpPv9VgT

@cfaware #cysticfibrosis @JustTreatment