Vertex CEO, Dr. Jeff Leiden responds to our letter

Dr. Jeffrey Leiden & Vertex Pharmaceuticals

Prioritize global availability of CF medicines now and in the future

Dr. Jeffrey Leiden,

This year is set to be momentous for you as CEO and everyone at Vertex Pharmaceuticals. The coming to market of triple therapy treatments for cystic fibrosis (CF), which could give 90 percent of patients a near normal life, can create a legacy that will be remembered forever in the history of medicine, science, and business. We know Vertex is working hard on treatments for the other 10 percent too.

But drugs don’t work if people can’t take them

Cystic fibrosis (CF) is a cruel, progressive, life threatening condition that still has no cure. Until the advent of Vertex medicines there were no treatments for the underlying cause of the condition. Instead, families had to endure years of intense healthcare to firefight the symptoms, not daring to dream of the future. It is a truly amazing achievement that your drugs can one day end the threat to life that has hung like a dark cloud around the world for decades. Vertex’s inspirational science and dedication must now be matched by a determination to rid the globe of the scourge of early death from CF.

At the recent JP Morgan Healthcare Conference you stated that ​18,000 of the 37,000 patients eligible for your three licensed drugs are being treated​. We are asking for immediate treatment with current drugs for all patients and to have the prospect of even better therapies in the future. We represent patients who remain untreated all around the world – over half.

We are CF patients and their families around the world in countries without access - England, Wales, Northern Ireland, Canada, Spain, Belgium, Russia, Poland, Switzerland, Portugal, Czech Republic, Turkey, South Africa, New Zealand and others. We are desperate for a better future, to receive a reduction in the suffering we and our children face now and every day as health deteriorates. We are CF health professionals around the world watching patients decline without access.

We are U.S. patients and their families who cannot afford the egregious prices. We are CF doctors in the U.S. who have witnessed first-hand the impact of unaffordable medicines.

As you discuss Vertex’s considerable fourth quarter earnings this week and look to the year ahead, please consider that both the company’s financial growth and altruistic aims are achieved in the same way – by getting your medicines to all patients.

By extending the global reach of Vertex’s current medicines, not only can the company provide relief for and give hope to many more patients in more countries, it would also exclude fewer US patients, by lessening the pressure on prices there, which are set so high because global coverage is so low.

Vertex possesses the wonderful opportunity to leave a legacy like that of Bill & Melinda Gates with their work on Malaria. However, the reality at the moment is that children and adults with CF are suffering irreversible damage to their health and dying far too young. An estimated 220 patients eligible for Orkambi in the UK alone have already died since EMA licensing. Early treatment could have given them longer with their loved ones. They were sons, daughters, wives, husbands, parents, friends. All around the world lives are being lost avoidably. This must come to an end.

We urge you to make it a personal and corporate mission to bring life and hope where there currently is fear and early death. Prioritize global availability of CF medicines now and in the future.

End the threat to life from cystic fibrosis worldwide

David Orenstein, Professor of Cystic Fibrosis, Antonio J. and Janet Palumbo, Pittsburgh, PA, USA

Paul Quinton, Medical Scientist, Prof Pediatrics, UCSD School of Medicine, San Diego, USA

Brian P. O'Sullivan, MD, Professor of Pediatrics, Geisel School of Medicine at Dartmouth, Hanover, NH, USA

Carlos Milla, MD, Professor of Pediatrics (Pulmonary Medicine) at the Lucile Salter Packard Children's Hospital, Stanford University School of Medicine, Stanford, CA, USA

Richard B Moss, Professor Emeritus, Stanford University, Palo Alto CA, USA

Andrew Bush, Professor of Paediatric Respirology, Imperial College, London, UK

Cystic Fibrosis Service, Great Ormond Street Hospital for Children, London, UK

Dr Donna McShane, Paediatric CF & Respiratory Medicine Consultant, Addenbrooke's Hospital, Cambridge, UK

Dr Richard Chavasse, Consultant Respiratory Paediatrician, St. Georges Hospital, London, UK

Lisa Morrison, Principal Physiotherapist, Glasgow, UK

Helen Douglas, Respiratory Specialist Physiotherapist, Great Ormond Street Hospital for Children, London, UK

Tamara Orska, Clinical Lead Physiothapist, Kings College Hospital, London, UK

Dr Karen Marshall, Nurse Consultant at Newcastle Upon Tyne NHS Foundation Trust, Newcastle upon Tyne, UK

Margaret Macleod, Physiotherapist NHS , UK

Becky, Physiotherapist, Leicester, UK

Joanna Coates, Respiratory Paediatric Physiotherapist, Derby, UK

Charlotte Francis, Physiotherapist at Royal Papworth Hospital, Cambridge, UK

Emma larner, Physiotherapist, Norfolk and Norwich Hospital, Norwich, UK

Shehnaz Raniwalla, CF Physiotherapist, London, UK

Zoe Johnstone, Physiotherapist NHS Lothian , Edinburgh, UK

Stephanie Cruickshank , Physiotherapist, Aberdeen, Scotland, UK

Louisa Elliott, Advanced Physiotherapist, SCH, Sheffield, UK

Tracey Daniels, Specialist Physiotherapist, York Hull Adult CF Centre, York, UK

Carina Loughran, CF Specialist Physiotherapist, Belfast, Northern Ireland

Lauren Alexander, Physiotherapist, Royal Belfast Hospital for Sick Children, Belfast, Northern Ireland

Penny galey, Norfolk & Norwich Hospital, Norwich, UK

Wendy, Wexham Park Hospital, Maidenhead, UK

Jane Bell, Physiotherapist, RBHSC, Belfast, NI

Emily Janczak, Physiotherapist, Glenfield Hospital , Lutterworth, UK

Deirdre Gaire, Senior Physiotherapist in Glenfield Hospital, Leicester, UK

Rossa Brugha, Respiratory Paediatrician, King's College Hospital, London, UK

Fiona Bartlett, King's College Hospital London, London UK

Dr Cara Bossley, Consultant in Paediatric CF King's College Hospital, London

Tim Lee, Honorary Clinical Associate Professor, Leeds Regional Paediatric Cystic Fibrosis Centre, Leeds, UK
Dr Paul Whitaker, Consultant, Leeds Teaching Hospitals , Leeds, UK

Rebecca Preece, Paediatric Nurse, Bristol, UK

Dr Emma Guy, Paediatric Respiratory Consultant, Leeds Children's Hospital, Leeds, UK

Dr. Saikiran Gopalakaje, Consultant Respiratory Paediatrician, Leeds, UK

Christopher Edwards, Paediatric CF & Respiratory Consultant, Leeds Childrens Hospital, Leeds, UK

Sophie King, Dietitian, King's College Hospital, London, UK

Jorge Meira, Clinical Nurse Specialist in Cystic Fibrosis, London, UK

Sarah Pierce, Specialist Paediatric Respiratory Physiotherapist, King's College Hospital, London, UK

Dr Ian Clifton, Consultant Respiratory Physician, Leeds, UK

Ian Haw, Paediatrician, Invercargill, New Zealand

Dr Catherine Baird, Netcare Milpark Hospital and Charlotte Maxeke Hospital Adult Cystic Fibrosis Units, Johannesburg, South Africa

Juliana Keeping, CF parent and Patient Advocate, Patients For Affordable Drugs, Maryland, USA

Lora Moser, Patient Advocate, Patients For Affordable Drugs, Austin, TX, USA

Beth Butters, Yulee, Florida, USA,

Jeannine Ricci, Haddon Heights, New Jersey, USA

Marlene Lewis, Montreal, Canada

Wynne Wilson, Kelowna, Canada

Diarmaid McDonald, Lead Organiser, Just Treatment, Bristol, UK

Christina Walker, CF Parent and Patient Advocate, East Sussex, UK

Nicola Johnson, CF Parent and Patient Advocate, Oldbury, England, UK

Ben Knowles, Patient Advocate, Maidstone, Kent, UK

Emily Birchall, CF Parent and Patient Advocate, Leeds, UK

Liam Mc Hugh, CF Parent and Patient Advocate, Castlederg Co.Tyrone N.Ireland.

Gayle Pledger, CF Parent and Patient Advocate, Cambridge, UK

Jolene McCaffrey, CF Parent and Patient Advocate, London, UK

Robert Long, CF Parent and Patient Advocate, Sussex, UK

Danica Bowers, Sheffield, UK

Sue Barnes, Patient Advocate, England, UK

Jane Drumm, Chairperson, CF New Zealand, New Zealand

Liz Breslin, Branch Network of Cystic Fibrosis New Zealand, Hawea Flat, New Zealand

Kath Sanderson, Branch Network of Cystic Fibrosis New Zealand, Auckland, New Zealand

Pip Harker, Branch Network of Cystic Fibrosis New Zealand, Hawea, New Zealand

Donelle Mason, Branch Network of Cystic Fibrosis New Zealand, Wellington, New Zealand

Cayzia Mills, Branch Network of Cystic Fibrosis New Zealand, Auckland, New Zealand

Kelcie Mills, Hamilton, New Zealand

Jason Mills, Waihi Beach, New Zealand

Mirosław Wójcik, Board Member, Oddech Zycia Foundation in Poland (Fundacja Oddech Życia), Krakow, Poland

Agnieszka Jaworska, Patient Advocate, Warsaw, Poland

Katarzyna, Patient Advocate, Poland

Tomasz Goralski, Poznan, Poland

Izabela, Radom, Poland

Josep Marí García, Benifaió (Valencia), Spain

Leighton Parry, Porto Colom, Spain

Kerry Denman, Ciutadella de Menorca, Spain

Dave Roebuck, Pretoria, South Africa

Bruno Meier, Zurich, Switzerland

Natasa, Zurich, Switzerland

Susi Müller, Wolfhausen, Switzerland

Plus 366 patients, parents, friends and family in the United Kingdom.

Plus 71 patients, parents, friends and family in New Zealand.

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Thank you.

©2018 CF Support Group.