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.
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
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
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
Michaela Barkaway; UK
Alex Langdon; Sunbury on Thames;
Claire Holland; Heathfield, UK; supporter of Luis Walker, age 8 with CF