CF Buyers Club

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

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

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/…

.@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

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/…

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

@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

#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

#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

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

.@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

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

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'

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

“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