Patient relief as Lithuania strikes nationwide deal for cystic fibrosis medicines
Cystic fibrosis sufferers in the Baltic state have battled for years to access Vertex’s medicines, now the life-saving treatments are available to all.
Judging by the sparks of joy in Milda’s eyes, one would think the four-year-old has just received a new toy. Instead, the Lithuanian girl is finally holding the medicines that help her breathe, ridding her small lungs of the mucus clogging them day and night. After a long and bitter battle between Vertex, the company developing cystic fibrosis treatments, and the Lithuanian authorities, Milda’s medicines, Kaftrio and Kalydeco, have finally been reimbursed by the public healthcare system.
Since mid-October the two ‘miracle’ medications have become available to all patients in the country, including young children. “Milda’s lungs started clearing out! She is definitely more energetic,” the girl’s mother, Urtė Gylienė wrote to Investigate Europe five days after Milda finally accessed the medicines.
In June, we reported on the girl’s plight and Urte’s fears that her daughter would suffer and die in her arms. According to the deal between US-headquartered Vertex and the Lithuanian authorities at the time, Milda wasn’t eligible for the drugs. Their extremely high price meant that the government was planning to provide them only to the most severe cases of patients over six years old.
Taking advantage of Lithuania’s small patient population and feeble negotiating power, Vertex had forced the Baltic state to agree to buy Kaftrio and Kalydeco at one of the highest prices in Europe (an estimated €175,000 per patient per year, more than double the price it charges France, our investigation published earlier this year found). These steep price differences between countries are kept secret and shedding light on them required a lot of work combining open data (it also won Investigate Europe a nomination for the Daphne Caruana Galizia journalism award).
Vertex dismissed the findings of our investigation in June and failed to respond to specific questions about its pricing strategy.
This is not just about Vertex, though. It is, according to our sources, a widespread business strategy. Instead of providing cheaper prices to those less able to pay, companies follow simple price-volume agreements, where the biggest customers typically get the best deals, while weak and poor countries are stuck with the highest prices.
Pharmaceutical firms will often impose their terms by using a simple technique: they threaten to withhold their drugs from a country altogether. An unnamed source with direct knowledge of the matter said that in Lithuania, Vertex did not negotiate at all for two years, waiting for public pressure to build up and for the government to cave in. In contrast, patients in Germany, France and other richer countries have had access to Kaftrio and Kalydeco since 2020 or 2021.
Lithuanian patients have been suffering until this October. Milda spent the first four years of her life in and out of emergency rooms, due to a series of life-threatening infections. At least one hour a day, she was wearing a vibrating vest that shook her whole body in order to free her lungs.
“After the last negotiation, the price is better and the negotiating condition is that all patients are treated,” Lithuania’s deputy health minister Edgaras Narkevičius said. “How much the state will pay cannot be disclosed.”
Lithuania, just like other small countries, is still at the mercy of industry which gets a license to operate in the entire EU but then picks and chooses the most interesting markets, leaving the rest aside. At least the veil of secrecy that allows the pharmaceutical industry to “divide and rule” has been lifted. Now we have direct evidence showing how the system works. And Milda, at least, can breathe.
Ida Mazutaitiene from the Lithuanian outlet 15 mins contributed reporting.
Since mid-October the two ‘miracle’ medications have become available to all patients in the country, including young children. “Milda’s lungs started clearing out! She is definitely more energetic,” the girl’s mother, Urtė Gylienė wrote to Investigate Europe five days after Milda finally accessed the medicines.
In June, we reported on the girl’s plight and Urte’s fears that her daughter would suffer and die in her arms. According to the deal between US-headquartered Vertex and the Lithuanian authorities at the time, Milda wasn’t eligible for the drugs. Their extremely high price meant that the government was planning to provide them only to the most severe cases of patients over six years old.
Taking advantage of Lithuania’s small patient population and feeble negotiating power, Vertex had forced the Baltic state to agree to buy Kaftrio and Kalydeco at one of the highest prices in Europe (an estimated €175,000 per patient per year, more than double the price it charges France, our investigation published earlier this year found). These steep price differences between countries are kept secret and shedding light on them required a lot of work combining open data (it also won Investigate Europe a nomination for the Daphne Caruana Galizia journalism award).
Vertex dismissed the findings of our investigation in June and failed to respond to specific questions about its pricing strategy.
This is not just about Vertex, though. It is, according to our sources, a widespread business strategy. Instead of providing cheaper prices to those less able to pay, companies follow simple price-volume agreements, where the biggest customers typically get the best deals, while weak and poor countries are stuck with the highest prices.
Pharmaceutical firms will often impose their terms by using a simple technique: they threaten to withhold their drugs from a country altogether. An unnamed source with direct knowledge of the matter said that in Lithuania, Vertex did not negotiate at all for two years, waiting for public pressure to build up and for the government to cave in. In contrast, patients in Germany, France and other richer countries have had access to Kaftrio and Kalydeco since 2020 or 2021.
Lithuanian patients have been suffering until this October. Milda spent the first four years of her life in and out of emergency rooms, due to a series of life-threatening infections. At least one hour a day, she was wearing a vibrating vest that shook her whole body in order to free her lungs.
“After the last negotiation, the price is better and the negotiating condition is that all patients are treated,” Lithuania’s deputy health minister Edgaras Narkevičius said. “How much the state will pay cannot be disclosed.”
Lithuania, just like other small countries, is still at the mercy of industry which gets a license to operate in the entire EU but then picks and chooses the most interesting markets, leaving the rest aside. At least the veil of secrecy that allows the pharmaceutical industry to “divide and rule” has been lifted. Now we have direct evidence showing how the system works. And Milda, at least, can breathe.
Ida Mazutaitiene from the Lithuanian outlet 15 mins contributed reporting.