Photo Guus Schonewille
There is nothing wrong with the effect of the drug Kaftrio. The Zorginstituut even considers the drug a ‘leap forward’ for patients with ‘cystic fibrosis’, better known as cystic fibrosis. The problem is the price. At least three quarters must get rid of it.
The Zorginstituut Minister Tamara van Ark (Medical Care, VVD) advised Tuesday otherwise not allow the drug to be included in the basic package. Kaftrio costs 194,000 euros per patient per year. Each year, this amounts to a maximum of 156 million euros. That amount is “not easy to explain to society”, writes the Zorginstituut, which advises the ministry on the basic package.
Cystic fibrosis is a deadly condition in which the lungs and other organs continue to deteriorate. The American Vertex already made more medicines against cystic fibrosis, including
Orkambi. That drug became famous because former Minister Edith Schippers (Public Health, VVD) refused it because of the price, to the frustration of patients. The pharmaceutical company asked 170,000 euros per person per year. After a difficult negotiation, the minister allowed it to be included in the basic package on her last working day in 2017.
Vertex again asks the top prize for every new drug, the Zorginstituut has concluded. Pharmaceutical companies usually defend sky-high prices on the grounds that expensive (but secret) research and development costs have to be recouped. But this is a variation on another Vertex means: Symkevi. The development costs cannot be that expensive at all, according to the Zorginstituut.
The Zorginstituut advises Minister Tamara van Ark (Medical Care, VVD) not only to negotiate firmly about Kaftrio. She also has to rethink the price of Vertex’s cystic fibrosis drugs that are already on the market. After all: Vertex – turnover of 5.2 billion euros and worth 46 billion euros on the stock exchange – will by now also have recouped those investments, the Zorginstituut thinks.
In order to be stronger, Van Ark can best do the negotiations together with other European countries, the Zorginstituut writes in its advice.
Waiting painful for patients
Jacquelien Noordhoek of the Dutch Cystic Fibrosis Foundation sees the advice with sorrow. The drug Kaftrio does not just work just a little bit, says the director, but is “impressively effective”. “We know from the experiences of patients in studies that Kaftrio can make the difference between sitting at home on benefits or being fit enough for a part-time job. Between whether or not to receive informal care. “
The foundation believes that the drug can mean something for about a thousand Dutch patients. For some it will make a significant difference. “With this drug, a lung function of 60 percent – difficult to climb the stairs – can improve by 20 percent within a month,” says Noordhoek.
The foundation is disappointed by the delay that the negotiations will cause. “We still know that the negotiations about Orkambi took a year and a half,” says Noordhoek. “That is not a good time for patients.” The director also thinks the drug is too expensive and does not want to defend the manufacturer. At the same time, she emphasizes that medicines that work so well also save society a lot of money. Such as hospital admissions, lung transplants and benefits.
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