This CF patient has a powerful message for big pharma

This week, the North American Cystic Fibrosis Conference (NACFC) will bring together scientists, clinicians and big pharma representatives from around the world to discuss and share ideas on the latest advances in Cystic Fibrosis research and drug development. This is the biggest CF-related event in the world and unfortunately, CF patients have been almost entirely left out of the discussions at the conference. 

But we believe patient voices deserve to be heard. Thousands living with CF across the world have been denied access to lifesaving medicines due to the greed of US pharma company Vertex. So we have joined forces with Vertex Save Us to amplify the voices of CF patients who go unheard and ignored in their fight for access to treatment.

We asked Rafaelle - a 22-year old Cystic Fibrosis patient from Brazil -what she would say if she was given an opportunity to speak at the conference. Rafaelle’s family sold everything to be able to buy two boxes - just a few months worth of - CF drug Trikafta.

Through the CF Buyers Club, launched in 2019 by Just Treatment and a group of patients, they soon found out about a generic manufacturer based in Argentina called Gador, who’s prices for CF drugs were drastically lower than Vertex’s list price. She has recently celebrated 1 year of being on modulators, but the money has since run out and now her family are taking out a loan to be able to buy more medicine.

Here is what Rafaelle had to say to the NACFC: 

Dear Vertex and participants of the North American Cystic Fibrosis Conference, 

My name is Rafaelle, I am Brazilian, I am 22 years old and I was diagnosed at the age of 5 with Cystic Fibrosis. I have F508 and S4X mutations, and I have been on the lung transplant waiting list since February 2020. 

I imagine you have heard many stories about the lives of people with cystic fibrosis, telling mine would be just one of them. So I would like to share a reflection...What is the meaning of people, scientists, pharmacists, trained professionals devoting so much time, work, knowledge, research and technology to create something so incredible, capable of transforming people, giving back hope, dignity and saving lives, if the final product is inaccessible to those who need it?

What's the point of creating a formula that saves lives and choosing not to save them? How does it feel to receive calls for help and ignore them, even though you have the miracle in your hands? I can't understand why! 

We're not talking about cell phones, computers or a car, we're talking about lives. The power to end so much suffering, pain and sadness is in your hands, a decision made by you can change the history of Cystic Fibrosis in the world and bring more meaning to your own lives.

Thank you,

Rafaelle Carolina Paschoetto Pereira

Thousands of patients with cystic fibrosis are suffering and dying because US company Vertex is charging up to $310k a year for lifesaving medicine. At Just Treatment we believe that everyone has the right to fair access to high quality health care - no matter where we live. We must fight against the pharma greed that is costing lives every single day. Join us & Vertex Save Us in demanding global access to CF drugs now - add your name to our petition!