After tireless campaigning efforts by Brazilian cystic fibrosis patients and their families, supported by Vertex Save Us and Just Treatment, it’s been announced that lifesaving CF drug Trikafta will be provided within the Brazilian healthcare system! This is the first time Vertex has made this life saving drug available in a middle income country in the four years since it was first approved. Not a single low income country has access.
It was only a few months ago that Brazil’s 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.
In response to this news - together with CF families, patient associations and advocacy groups, - we urged the Brazilian government to initiate efforts to break Vertex’s monopoly on this medicine by issuing a compulsory licence, a legal mechanism that allows a cheaper generic version of a drug to be produced. We now understand that this coordinated pressure led to a significant price reduction from Vertex, just like it did in the UK and Poland where patient pressure also forced change.
As a direct result of patient actions, on 3rd August 2023 CONITEC announced a positive recommendation for Trikafta to be incorporated into the healthcare system!
The last step - for the Secretary of Science & Technology to approve the recommendation - has been completed and now the law demands that the medication must be made available to CF patients within 180 days.
This move will transform and save the lives of thousands of patients in Brazil who previously struggled to afford access. Patients like 22-year old Rafa, whose family had to sell their land and take out loans to afford a few boxes of treatment. It is unjustifiable for a giant drug company to hold lives to random like this whilst raking in billions in profit.
Speaking about the announcement, Rafa said: ‘The incorporation of Trikafta into the Brazilian public health system is a historic event that will transform the lives of CF patients and their families. From now on, lives will be saved. I feel relieved to know that I will now have my treatment secured. I wish the same for all other countries that still don’t have access to this miracle drug”.
Leticia Lemgruber, a leading CF campaigner in Brazil said: "I have no doubt that the determining factor for us to reach this decision was the pressure and the formal request for compulsory licensing, along with the Government’s firmness during negotiations, which forced Vertex to lower their price.”
Tatiani Ramina, Rafa’s aunt and ‘Right to Breathe’ campaigner added: “The courage of the patient associations was also decisive. The request for compulsory licensing and questions about the unacceptable price of the medicine increased the pressure during negotiations and made the approval possible. This will be a new chapter for CF in Brazil. I wish that other countries without access also manage to win this unfair battle. CF can’t wait.
This victory shows the immense power of patients and advocates organising collectively - but this is only the beginning. We will not stop our campaign until every patient in every country is able to access the lifesaving treatment they need. Together we are stronger, and we will ensure that no one is left behind!
This incredible breakthrough would not have been possible without the work of many Brazilian organisations, patients and activists. We’d like to thank GTPI (Working Group of Intellectual Property), ABRAM, Unidos Pela Vida, GBEFC and the many other Brazilian patient associations and groups that have supported the Right to Breathe campaign.