160K+
people worldwide suffer from cystic fibrosis, a life shortening genetic disease.
$326K
is the price that Vertex Pharma charges per patient per year for their CF medicines
28%
of patients have access
to life-transforming
medicines.
CYSTIC FIBROSIS PATIENTS LAUNCH GLOBAL CHALLENGETO VERTEX’S MONOPOLY!
THE STORY SO FAR...
The Right to Breathe is a patient-led campaign that is challenging US drug giant Vertex Pharmaceuticals over its scandalous drug pricing for cystic fibrosis medication, Trikafta. We demand access to this lifesaving treatment for every patient, everywhere.
Since the campaign launched there have been some key updates in several countries!
In March 2023 the National Commission for Incorporation of Technologies in the Unified Health System (CONITEC) did not recommend Trikafta being incorporated into the health system because of the extortionate price being charged by Vertex.
Together with CF families, patient associations and advocacy groups, we urged the Brazilian government to initiate efforts to overcome Vertex’s monopoly on this medicine. We understand that this coordinated pressure led to a significant price reduction from Vertex.
As a direct result of these actions, on 3rd August 2023, after tireless efforts from campaigners, CONITEC announced a positive recommendation for Trikafta to be incorporated into the healthcare system. This recommendation was approved by the Secretary of Science & Technology in September 2023. The law demands that the medication be made available to cystic fibrosis patients within 180 days.
In South Africa, Cheri Nel - a CF patient - filed a court petition for a compulsory license. She is calling for a low-cost generic version to be imported or made locally.
On the 7th March 2023 Vertex's lawyers wrote to the South African courts with notice of its intention to oppose the compulsory licence. They have also requested additional time to develop their case, risking the lives of patients through further delays.In July 2023, Vertex filed an 800 page ‘answering affidavit’ clearly showing that they intend to enter into a lengthy and costly legal battle against a CF patient who is fighting for her life and does not have time to wait.
Subsequently, Vertex reached an access agreement with certain high-end medical insurance providers in South Africa, allowing patients with such insurance to access their CFTR modulator drugs, including Trikafta.Following this agreement, the legal case was withdrawn from the South African High Court. However, the terms of the agreement remain confidential, and it is estimated that only 25–33% of South African CF patients will benefit from this deal. The majority of patients, particularly those relying on public healthcare or without high-end medical insurance, will still not have access to these life-saving medications. We will continue to campaign until every patient has access.
In February 2024, we supported CF families from Estonia & Lithuania in their efforts to advocate for better access to life-saving treatments by assisting them in writing to their respective governments.
Estonia has now secured access to these medications for its CF patients. We remain hopeful as we await further developments from Lithuania, where discussions are ongoing.
In Ukraine, The Ministry of Health has responded to a letter sent by cystic fibrosis families and advocates, saying they have repeatedly appealed to Vertex to register Trikafta, yet Vertex continues to ignore these requests.
Meanwhile, we have learned that Vertex is proposing a donation programme for Lviv patients. But despite our requests, Vertex has provided no information. A small donation scheme is no substitute for equitable access for all cystic fibrosis patients.
In February 2023 a coalition of CF patients and their families from India wrote to the government seeking a revocation of Vertex's patents for failing to supply their medication to patients and for their unaffordable high prices.
Since this letter, we continue to work with CF families and advocates in India towards our goal of gaining universal access to modulators.
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SUPPORTIVE ORGANISATIONS
The following organisations support the aims and objectives of the Right to Breathe campaign
Brazilian Cystic Fibrosis Association
German Cystic Fibrosis Association
Middle East Cystic Fibrosis Association
South African Cystic Fibrosis Association
Swiss Cystic Fibrosis Association
Turkish Cystic Fibrosis Association
Working Group on Intellectual Property