Robert Long (@See_off_CF) header
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Robert Long

@See_off_CF
Joined January 2011
  • Tweets416
  • Following72
  • Followers122
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Photo by Robert Long (@See_off_CF)Photo by Robert Long (@See_off_CF)Photo by Robert Long (@See_off_CF)Photo by Robert Long (@See_off_CF)Photo by Robert Long (@See_off_CF)Photo by Robert Long (@See_off_CF)Photo by Robert Long (@See_off_CF)Photo by Robert Long (@See_off_CF)Photo by Robert Long (@See_off_CF)Photo by Robert Long (@See_off_CF)
VSU are delighted that during her tenure as UN Special Rapporteur, @drtlaleng ‘plans to deal with the issue of access to medicines and the right to health’. Good news on #RareDiseaseDay for 000’s of CF patients left to die w/o access to @vertexpharma drugs. #HumanRights #UNHRC
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.@drtlaleng 000's people in #SouthAfrica are desperate for access to #RareDisease drug #trikafta extend their life. 000's more need trials for their genotypes. On #RareDiseaseDay2021 will @VertexPharma commit to global access 4 its #cysticfibrosis drugs? youtu.be/7FzOTPYtwyE
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.@drtlaleng people in #india w/ #RareDisease CF urgently need treatment with CFTR modulators. 0000's are estimated undiagnosed too On #RareDiseaseDay2021 will @VertexPharma commit to global access to all its drugs & save all #cysticfibrosis lives? $vrtx youtu.be/0SlgiqQhg2Q
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.@drtlaleng people in #poland & most #easterneurope don't have access to the latest, or any, CFTR modulators to save their life from #RareDisease #cysticfibrosis On #RareDiseaseDay2021 will @VertexPharma commit to treating all who could benefit globally? youtu.be/9Zdmk_MExM8
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.@drtlaleng when @PaulQuinton6 the 'founding father' of modern #cysticfibrosis meds urges @vertexpharma to treat fellow sufferers globally, surely Dr Kewalramani will make prices affordable? On #RareDiseaseDay2021 please commit youtu.be/GEa7w2Sd-UI
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Only a handful of people in Poland have access to @VertexPharma medicines. What about the rest? Should they be left to suffer & die? Give these children a future & end the suffering. #LivesB4Profit #Poland #globalcffamily
Image from Vertex Save Us (@VertexSaveUs)
Image from Vertex Save Us (@VertexSaveUs)
Image from Vertex Save Us (@VertexSaveUs)
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Lorryn has lost one sister to CF & time is running out for her. Are u going to let her die & put her family through that agony again @vertexpharma? Make ‘compassionate use’ meds available in all countries now & end the suffering. #LivesB4Profit @drTlaleng #HumanRights #ignored
Image from Vertex Save Us (@VertexSaveUs)
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Children in South Africa and around the world deserve a future, no more pain or fear - their lives are in your hands @VertexPharma. Make your life-saving drugs available around the globe and end the suffering. Enough is enough $vrtx #LivesB4Profit @drtlaleng #HumanRights
Image from Vertex Save Us (@VertexSaveUs)
Image from Vertex Save Us (@VertexSaveUs)
Image from Vertex Save Us (@VertexSaveUs)
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I DESERVE TO LIVE #VertexSaveUs #LivesB4Profit #Poland #Kaftrio #CF #CfPoland
Image from Gosia vs Muko (@Magorza24718993)
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#LivesB4Profit @drtlaleng
Natali (@Natali50841361) profile pictureNatali@Natali508413611 Feb 2021
Replying to @CF_Foundation
@CF_Foundation @VertexSave @VertexPharma @Raremark_CF @CFAdvocacynow @CFNewsToday @CFinit4ALLuk @CFno1LeftBehind @The_CF_Channel @MON_UKRAINE @JoeBiden @USEmbassyKyiv @zelenskiyua @CF_Tweeter @jenibev Trikafta = my life 🥰💕
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"NewsHub can reveal this has forced New Zealand's drug buying agency @PHARMACnz to take the highly unusual step of calling out the American company that makes it" Thank you for this report @patrickgowernz @VertexPharma have a reputation of putting profit first. #LivesB4Profit
Newshub (@NewshubNZ) profile pictureNewshub@NewshubNZ2 Feb 2021
#EXCLUSIVE: Trikafta. It's the $430,000-a-year drug that changed Bella Powell's life. She has cystic fibrosis and is calling out the drug's US manufacturer as Kiwis fight for access dlvr.it/RrqYMQ (Via #Newshub's @patrickgowernz)

Medicine manufacturer called out over cystic fibrosis drug | Newshub

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Children with CF around the world deserve to live don't they @VertexPharma? Not just those living in rich countries. With $billions in the bank, prove that you care about CF patients by publishing a global access policy as per UN guidelines. #LivesB4Profit #HumanRights @drtlaleng
Image from Vertex Save Us (@VertexSaveUs)
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We wrote 2 @vertexpharma in Oct&Nov on behalf of 3000+ CF patients asking for their plans on global access #IGNORED. UN guidelines say Vertex shld have a global access policy #IGNORED. Worldwide young people are dying without access to live-saving meds #IGNORED. Enough is enough.
Image from Vertex Save Us (@VertexSaveUs)
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Juliet from NewZealand wrote to @Vertexpharma in 2020, incl CEO Dr Kewalramani, begging for help but no one cared. Juliet died in June. How many more deaths? With $billions in the bank, make ur meds available worldwide & end the suffering. #LivesB4Profit @drtlaleng #HumanRights
Image from Vertex Save Us (@VertexSaveUs)
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“Children should carry a school bag, not an oxygen tube.” @VertexPharma Stop holding children to ransom & provide access to all in need of your #cysticfibrosis medicines. #globalcffamily #humanrights @kfsesimizol @kifder #southafrica #newzealand #poland #canada #france etc etc
Image from Vertex Save Us (@VertexSaveUs)
İlaydaGülbeyaz (@ilaydaGlbeyaz) profile pictureİlaydaGülbeyaz@ilaydaGlbeyaz18 Jan 2021
#sesimiduy kistikfibrozis başta akciğerler olmak üzere vücuttaki tüm organlara zarar vererek hayat süresini ciddi anlamda düşüren ölümcül bir hastalıktır. Kistikfibrozis mutasyon ilaçları geri ödemeye alınsın hastalarımız ölmesin çocuklar oksijen tüpü değil okul çantası taşısın
Image from İlaydaGülbeyaz (@ilaydaGlbeyaz)
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Just 14 years old, Lisa loves life, she has hopes & dreams of a bright future. Will you crush those dreams @VertexPharma or ensure that your meds are made available to everyone, regardless of where they live & how much profit you can make from the sick. #vertexsaveus $vrtx
Natali (@Natali50841361) profile pictureNatali@Natali508413618 Dec 2020
Hello everyone, friends! My name is Lisa . I am from Ukraine and I have cystic fibrosis. Two mutations F508 del destroy my lungs along with two Pseudomonas aeruginosa. Vertex, I'm only 14 years old! I love life! I love to study! Vertex save us! I need Trikafta !!! #Vertexsaveus
Image from Natali (@Natali50841361)
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Standing up for the rights of others in the #cysticfibrosis community means joining the call for @VertexPharma to make their CF drugs affordable around the world🌍 We're not asking them to give them away. Just to give poor countries a chance to afford them. #HumanRightsDay
Image from Strawfie Challenge (@strawfie)
Image from Strawfie Challenge (@strawfie)
Image from Strawfie Challenge (@strawfie)
UNESCO (@UNESCO) profile pictureUNESCO
@UNESCO10 Dec 2020
December 10 is #HumanRightsDay Standing up for the rights of others means standing up for the humanity we share. In these difficult times and always, #StandUp4HumanRights. on.unesco.org/2UoH4wl
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Dr Kewalramani wrote us on 27/10 @VertexPharma 'has..compassionate use programs for all of our #cysticfibrosis medicines to help critically ill patients.....where..there is sustainable pathway to ..access' Why is this not the case in #NewZealand? @drtlaleng #StandUp4HumanRights
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'However, if the reimbursement status changes for #kalydeco and therefore future plans with CFTR modulators (#orkambi #symdeko) for Juliet’s F508del homozygous genotype we can of course reassess the availability of compassionate use.’ But, after deal was done still no compassion
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“I know there is someone out there somewhere who can help me and I’m hoping that someone is you. You truly have the power here to save my life” (Dr Kewalramani) Juliet never saw a response. She died waiting, in June. RIP @VertexPharma @drtlaleng #StandUp4HumanRights #HumanRights
Image from Vertex Save Us (@VertexSaveUs)
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