@sarahboseley Thank you so much for getting our story out there. We’re forever grateful. ❤️
Good luck with your book writing :)
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CF Buyers Club
257 posts
CF Buyers Club
@CFBuyersClub
Helping to gain access to Cystic Fibrosis medicines for all. We are working with generic manufacturers to supply modulator medicines for people with CF.
Katılım Mayıs 2019
18 Takip Edilen245 Takipçiler
I can’t quite believe it, but I’ve left the Guardian - hopefully to write books. It’s been amazing. Such wonderful and talented colleagues. I will miss them so much. And a massive thank you to everyone who has spoken to me and helped with stories over the years.
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CF Buyers Club retweetledi
@heidisammons @VertexSave @VertexPharma @drtlaleng @UNHumanRights It’s unconscionable. With $6 billion in the bank @VertexPharma could & should rethink their pricing strategy & give all CF sufferers the right to live, regardless of where they live. #InternationalHumanRightsDay
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CF Buyers Club retweetledi
This pricing on life saving drug #trikafta is prohibitive & infringes on #HumanRights of Heidi & 000's others w/ #cysticfibrosis globally. On #InternationalHumanRightsDay we implore @VertexPharma to make it's drugs affordable to all & save lives @drtlaleng @UNHumanRights $vtrx
heidi sammons 🌹@heidisammons
@gayle_pledger @VertexSave @VertexPharma @drtlaleng @UNHumanRights I was told it’s $30,000 per month and my co-pay would be $3,000. After all my other medical expenses I do not have $3,000 for Trikafta and I live in California. It’s so depressing.
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CF Buyers Club retweetledi
Are you listening @VertexPharma? @donatopmancini @edsilverman @sarahboseley @blackrock @Vanguard_Group @TRowePrice @jpmorgan $vrtx 4 #InternationalHumanRightsDay we call for a stop to obstruction of 000s people w/ #cysticfibrosis rights by excessive pricing & no access plan
World Health Organization (WHO)@WHO
On #HumanRightsDay our message is clear: HEALTH IS A HUMAN RIGHT HEALTH IS A HUMAN RIGHT HEALTH IS A HUMAN RIGHT HEALTH IS A HUMAN RIGHT HEALTH IS A HUMAN RIGHT #StandUp4HumanRights , stand up for #HealthForAll!
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CF Buyers Club retweetledi
@vertexpharma @drtlaleng @UNHumanRights @vertexsave #internationalhumanrightsday #humanrights
#HumanRightsDay #vertexsaveus
World Health Organization (WHO)@WHO
On #HumanRightsDay our message is clear: HEALTH IS A HUMAN RIGHT HEALTH IS A HUMAN RIGHT HEALTH IS A HUMAN RIGHT HEALTH IS A HUMAN RIGHT HEALTH IS A HUMAN RIGHT #StandUp4HumanRights , stand up for #HealthForAll!
QME
CF Buyers Club retweetledi
@WHO We ask @drtlaleng @UNHumanRights 2 investigate how prohibitive pricing & distribution of life-saving drugs infringes on fundamental right to health that people w/#cysticfibrosis share around the world #HumanRights #StandUp4HumanRights @VertexPharma $vrtx statnews.com/pharmalot/2020…
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CF Buyers Club retweetledi
.@WHO(1946)“the highest attainable standard of health as a fundamental right of every human being” @UNHumanRights "The right to health is a fundamental part of our human rights and of our understanding of a life in dignity" #InternationalHumanRightsDay #HumanRightsDay @drtlaleng
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CF Buyers Club retweetledi
We begged @VertexPharma CEO 4 access 2 life-saving #cysticfibrosis drugs for everyone, wherever they live. In desperation we have sought intervention by @drtlaleng @UNHumanRights #internationalhumanrightsday #StandUp4HumanRights $vrtx #HumanRightsDay statnews.com/pharmalot/2020…
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CF Buyers Club retweetledi
We are 3000 people #cffamily incl lots w/immediately life-threatening #cysticfibrosis & extremely vulnerable to #COVID19. Many are refused access 2 #kaftrio despite meeting compassionate clinical qualifying criteria applied elsewhere @VertexPharma @drtlaleng #StandUp4HumanRights
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CF Buyers Club retweetledi
@VertexPharma is patent holder w/unilateral power to set price & distribution of #kaftrio w/cash $6.6B CF Revenues 2015–20 $18.5B, projected to 2021 $31.5B w/CF R&D since 2008 at $12.5B. Former CEO, now Executive Chairman J.Leiden paid $166.3mn since 2011 #StandUp4HumanRights
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CF Buyers Club retweetledi
#trikafta #kaftrio is $311,000 p.a. 4 life in #usa. ICER: ‘a remarkable advance for the majority of people living with CF. Unfortunately (@VertexPharma)..leveraged its monopoly to set a price-costing many millions of dollars over the lifetime of an average patient’ @drtlaleng
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CF Buyers Club retweetledi
#trikafta #kaftrio is saving #cysticfibrosis lives but is only reimbursed in USA, Germany, Denmark, UK, Slovenia due to price. We implore @VertexPharma make it affordable 2 000’s people w/life threatening illness everywhere #cysticfibrosis @drtlaleng #StandUp4HumanRights $vrtx
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CF Buyers Club retweetledi
People w/ #cysticfibrosis are dying needlessly around the world in #southafrica #asia #bulgaria #newzealand #Poland #russia #brazil. Median life expectancy in #turkey only 13.5 yrs old yet @vertexpharma wont make its drugs affordable there & generics blocked by patent @drtlaleng
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CF Buyers Club retweetledi
.@VertexPharma CEO says 'we view compassionate use programs as a bridge between clinical trials and commercial availability of medicines' ruling out #cysticfibrosis patients in most the world @drtlaleng $vrtx #StandUp4HumanRights #InternationalHumanRightsDay #HumanRightsDay
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CF Buyers Club retweetledi
Compassion can't come w/ strings attached nor be a sales tool. The fact is 000's are dying w/ #cysticfibrosis illness in absence of your compassion Dr Kewalramani. Global fund 4 those w/immediately life-threatening CF is needed now @UNHumanRights @drtlaleng #StandUp4HumanRights
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CF Buyers Club retweetledi
Registry is gr8 news but what MUST come too is treatments like #kaftrio #orkambi #kalydeco from @VertexPharma to #cysticfibrosis lives once diagnosed. Same in #india #brazil ++ Ethnic blindside & pure greed from Dr Kewalramani's strategy sees those regions as not 'profitable'
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CF Buyers Club retweetledi
Please read @drtlaleng “previous misconception held by many that (CF) did not occur in indigenous Africans is simply not true. It is very likely that most children born with the disease in Africa are dying very young, undiagnosed or misdiagnosed.”#StandUp4HumanRights #HumanRights
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CF Buyers Club retweetledi
“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
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CF Buyers Club retweetledi
Truly heartbreaking & avoidable. @vertexpharma @drtlaleng @UNHumanRights @vertexsave #internationalhumanrightsday #humanrights
#HumanRightsDay #vertexsaveus
Vertex Save Us@VertexSaveUs
“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
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CF Buyers Club retweetledi
Vertex Save Us@VertexSaveUs
6 brave people have stood up 4 #HumanRights & taken their fight to @UNHumanRights Special Rapporteur for Health @drtlaleng asking 4 investigation & 2 #StandUp4HumanRights of them & all w/ #cysticfibrosis everywhere fighting for access to life-saving drugs from @VertexPharma $vrtx
QME