June 5, 2019 News, Press Releases

Vertex is pricing life-saving medicines out of reach.

To: Vertex Pharmaceuticals CEO Jeffrey Leiden

We are members of cystic fibrosis, investment, and religious communities, and we agree that Vertex Pharmaceuticals, a Boston-based drug corporation, has priced life-saving drugs out of reach. It’s unfair. It’s unjust. And it must change.  

Cystic fibrosis is a rare genetic disease that impacts 70,000 to 100,000 people worldwide. It destroys the lungs and is ultimately fatal. Three medicines by Vertex — Kalydeco, Orkambi and Symdeko — help to correct an underlying defect of the genetic disease, extending the lives of some individuals with CF.

But alongside the narrative of scientific discovery and hope, a darker thread has emerged.

The price tags of the drugs are $311,503 per year for Kalydeco, $292,000 per year for Symdeko and $272,697 for Orkambi, according to the data firm Connecture.

As a result, American patients like Lora Moser, a 40-year-old Texan living with cystic fibrosis have been forced off their medicines and hospitalized. Forced to patch together funding sources to cover incredible costs, the same happened to Houston resident Robert Davis, 49, after he could no longer afford his $1,235 monthly copays for Kalydeco.

Another patient in desperate need is Luis Walker. He is only 8 and fighting an incredibly serious lung infection in England. Orkambi could help save Luis’ life, but Vertex has stalled negotiations with the British government for years while he has suffered, common practice as it seeks top-dollar for its drugs, which would not have been created without a large charity investment from the U.S. cystic fibrosis community. The company went so far as to destroy 600 years’ worth of medicine rather than allow children like Luis to take it.

The Irish media reported children and adults died awaiting the discoveries made in Boston.

If the children for whom these medicines are created continue to suffer and die, it’s as if the drugs were never made at all.

Pope Francis once wrote: “Today we have to say ‘thou shalt not’ to an economy of exclusion and inequality. Such an economy kills.” Please stand up for what’s right. Say no to an economy of exclusion before more children fall victim to something we must all stand against in medicine: greed.


Juliana Keeping

Mom to Eli, 6, cystic fibrosis patient; Communications Director, Patients For Affordable Drugs;  Vertex investor

Meg Jones-Monteiro; New York, NY; Interfaith Center on Corporate Responsibility; Program Director – Health Equity

Robert Davis, United States, CF patient

Brian P O’Sullivan, Epson, NH; Professor of Pediatrics, Geisel School of Medicine at Dartmouth College Medical Director, Clinical Trials Unit Pediatric Pulmonology Dartmouth-Hitchcock Medical Center

Paul Quinton, PhD; La Jolla, CA; Professor of Biomedical Sciences, UC Riverside School of Medicine, and Nancy Olmsted Professor in Pediatric Pulmonology, Dept. Pediatrics, UC San Diego School of Medicine and Rady Children’s Hospita

Jerry; Somerville, Texas

LaRae Sanford; Lufkin, Texas; Spouse of CFer

Jennifer Bourque, Augusta, GA; CF relative
Rachel; Texas; CF patient

Mark S Pian, MD; San Diego, CA; Professor Emeritus, Pediatrics UCSD School of Medicine

Billie Singletary; Kirbyville, Texas; CF Mom
Beth Butters; Yuee, FLA; 54-year-old with CF

Linda Heter; Rogers, AR
Christina Walker; Just Treatment; Parent to Luis age 8 with CF & Patient Leader

William & Eileen Coombes; England; Grandparents of Luis Walker with CF

Joanne Waring; Step mom to Luis Walker, aged 8, dying whilst he needs Orkambi NOW; UK

Caroline; Altrincham

Paul Walker; Altrincham; Father to Luis

Susan Walker; Altrincham; Grandmother to Luis
Laura Wetzel; CF Aunt; Vertex investor

Emma Langdon; Sunbury-on-Thames; Supporter of Luis Walker aged 8 with CF
Rev’d Annette Rose; London; Vicar, All Saints New Eltham; CF relative
Father Brett Ward; London; Holy Trinity Vicarage
Fran Quigley; Indianapolis, IN; Director, Health and Human Rights Clinic, Indiana University McKinney School of Law; Editor, Faith in Healthcare

David Mitchell; Maryland; Founder, Patients For Affordable Drugs
Julie Desch; San Rafael, MD
Angela, UK, Supporter of Luis Walker Age 8 with CF
Rosalind Langdon; Sunbury on Thames, UK; Supporter of Luis Walker age 8 CF sufferer

John Langdon; Sunbury on Thames, UK; Supporter of Luis Walker age 8 CF sufferer

Louise Hutchby; UK; Supporter of Luis Walker age 8 with CF

Patrick McKernan; UK; Supporter of Luis Walker age 8 with CF

Erica Hutchby; UK; Supporter of Luis Walker age 8 with CF

Rev’d Jay Ridley;; Worthing, West Sussex UK; Interested friend of Luis Walker

Alicia; UK

Michaela Barkaway; UK

Alex Langdon; Sunbury on Thames;

Claire Holland; Heathfield, UK; supporter of Luis Walker, age 8 with CF


Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.