Following months of relentless campaigning led by cystic fibrosis (CF) patients and families, supported by the Right to Breathe campaign, we are thrilled to share that access agreements for lifesaving treatment have now been reached in both Estonia and Lithuania! Here’s how it happened:
In January this year, desperate cystic fibrosis families from Estonia and Lithuania wrote letters to their governments and health ministers highlighting Vertex Pharmaceuticals’ profit driven behaviour and their lack of access to lifesaving CF modulator, Trikafta, due to the excessive prices being demanded by Vertex.
The families asked that their governments consider breaking Vertex’s patents, opening up the possibility of being able to access cheaper generic versions of Trikafta if an immediate agreement could not be reached with the company.
Just a few months after the letter to officials was sent, it was a huge relief to hear that Trikafta would be made available to all eligible CF patients in Estonia from the 1st July, removing the anguish and fear from the lives of dozens of families there.
However, there was still no news from Lithuania, where Urtė Gylienė, the mother of four-year-old cystic fibrosis patient Milda, spoke about life without Trikafta:
“Imagine everyday living with death around the corner. You never know what the next day will bring. If she will get sick and struggle gaining weight, or will struggle to breathe? Or if she will get a dangerous infection and die? And to know that everything could change with the help of modulators is torture. Only three tablets a day could save her life, could open opportunities for her future, for her dreams, goals, for her happiness and nearly being normal… It could change in a blink of an eye, if only we could access these medications at an affordable price.”
So, after months of campaigning and speaking out publicly about her disgust and anger at Vertex’s behaviour, and her fears for the life of her young daughter, it has come as a huge relief to Urte and CF families across Lithuania that Trikafta will now be available to all eligible patients from age 2+ across the country, within the next few weeks! We share their immense sense of relief - for them the future is bright.
Yet again, the actions of CF families standing up to Vertex’s greed and demanding that their governments put the rights of dying children before those of a profit hungry, multi-billion dollar drug company has resulted in access to the medicines that they desperately need.
Today we celebrate that there is now access to CF modulators across the Baltic region, but the fight does not end here - we will not stop until every patient has access to these lifesaving medicines.
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