Victory in Turkey: Trikafta to be funded through public health insurance

After years of relentless advocacy from patients, clinicians, and campaigners, Turkey has finally agreed to reimburse Trikafta - the life-changing cystic fibrosis (CF) treatment - through its general health insurance system for eligible patients.

This is a massive win for the Turkish CF community. Trikafta will now be available for people aged 6 and over with at least one F508del mutation, marking a turning point in the fight for equitable access to life-saving medicine.

A win for the movement

This outcome is thanks to the determined and persistent efforts of patients, families, clinicians, advocates and KIFDER (the Turkish CF Association) who have long led the charge for access. Ilknur from KIFDER, who’s been at the heart of the fight, told us:

“This is a life-changing moment for CF patients in Türkiye. Since 2019, we’ve pushed non-stop, organising countless meetings, launching the Be Our Voice for CF campaign, running public actions, gathering celebrity support, and taking legal action. Over 700 patients gained access through lawsuits, but our goal was always full reimbursement - and now it’s here. This victory belongs to every patient, family, doctor, lawyer, and supporter who stood with us. We’ll keep fighting until a cure is found.”

Over the last few years Vertex Save Us and the Right to Breathe campaign have consistently spotlighted the injustice of limited access in Turkey and pushed Vertex to take action. In February 2023, RTB advocate and paediatric pulmonologist Prof. Dr. Bülent Karadağ was quoted in the New York Times as part of the global launch of the Right to Breathe campaign to expose Vertex's behaviours and demand Trikafta For All. Today Prof. Dr. Karadağ told us:

"I still can not believe that our dream came true. Today I am so happy that we are able to get modulators for Turkish patients and thankful to all - Kifder, patients, doctors and politicians - helped us. On the other side, I am still too sad at least 50000 patients are either non-eligible or not able to access this medicine around the world. So our mission still continues until we reach all."

What the new reimbursement agreement means

To qualify for treatment, patients must:

• Have a confirmed diagnosis of cystic fibrosis via sweat chloride and/or genetic testing

• Be aged 6+ with at least one F508del mutation

• Show documented insufficient response or intolerance to previous CFTR modulators (if relevant)

• Provide baseline and follow-up data (e.g. FEV1, BMI, hospitalisation frequency)
  

Treatment must be prescribed by a specialist physician in paediatric or adult pulmonology at a tertiary care institution. Reimbursement is conditional on a treatment evaluation report submitted every 6 months showing continued clinical benefit.The fight is far from overWhile this is an incredible moment for CF patients in Turkey, thousands across Europe, the Middle East, Asia, and Latin America are still waiting. Vertex continues to delay negotiations and leave CF families in despair, refusing to offer fair prices in lower-income countries, despite earning billions each year from supplying CF patients in wealthy markets.

“Until now, patients in Turkey could only get access to Trikafta by suing the government, which was then forced to pay the full list price to Vertex for these specific patients. We see this pattern of behaviour in other countries too, resulting in a relatively small number of patients getting access, but only at an extortionately high cost to the health system. It’s no wonder Vertex are dragging their feet in countries where this is happening, when they can make huge amounts of money this way.” — Gayle Pledger, Right to Breathe