CF Buyers Club

Helping to gain access to Cystic Fibrosis medicines for all.

We are working with generic manufacturers to supply modulator medicines for people with CF.

[CF Buyers Club @CFBuyersClub]

@sarahboseley Thank you so much for getting our story out there. We’re forever grateful. ❤️

Good luck with your book writing :)

[Gayle Pledger @gayle_pledger]

@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

[Vertex Save Us @VertexSaveUs]

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

[Vertex Save Us @VertexSaveUs]

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

[Gayle Pledger @gayle_pledger]

@vertexpharma @drtlaleng @UNHumanRights @vertexsave #internationalhumanrightsday #humanrights
#HumanRightsDay #vertexsaveus

[Vertex Save Us @VertexSaveUs]

@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 https://t.co/ojyApT6BCz

[Vertex Save Us @VertexSaveUs]

.@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

[Vertex Save Us @VertexSaveUs]

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 https://t.co/ojyApT6BCz

[Vertex Save Us @VertexSaveUs]

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

[Vertex Save Us @VertexSaveUs]

@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

[Vertex Save Us @VertexSaveUs]

#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

[Vertex Save Us @VertexSaveUs]

#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

[Vertex Save Us @VertexSaveUs]

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

[Vertex Save Us @VertexSaveUs]

.@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

[Vertex Save Us @VertexSaveUs]

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

[Vertex Save Us @VertexSaveUs]

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'

[Vertex Save Us @VertexSaveUs]

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

[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

[Gayle Pledger @gayle_pledger]

Truly heartbreaking & avoidable. @vertexpharma @drtlaleng @UNHumanRights @vertexsave #internationalhumanrightsday #humanrights
#HumanRightsDay #vertexsaveus

[Vertex Save Us @VertexSaveUs]

@WHO https://t.co/qBDxFG0NnX