Health minister: Cost of drug for rare children’s disease must be reduced

There are 80 children in Israel with the rare neuromuscular disorder, which is characterized by loss of motor neurons and progressive muscle wasting, often leading to early death.

September 28, 2017 17:27
2 minute read.


Health Minister Ya’acov Litzman has called on the pharmaceutical company Biogen to significantly lower the price of its drug Spinraza, which is known for improving the condition of children suffering from genetic disease spinal muscular atrophy.

During the first meeting of the 2018 health basket committee in Jerusalem on Thursday, Litzman said he has never interfered with recommendations by the public committee, but that if it decided to pay for the drug, the developer and manufacturer would have to cut the price.

In the US, the cost of a single dose of the drug, approved by the US Food and Drug Administration in December, is $125,000.
There are 80 children in Israel with the rare neuromuscular disorder, which is characterized by loss of motor neurons and progressive muscle wasting, often leading to early death. The cost in Israel for treating those children would be NIS 180 million per year. The additional budget for the 2018 basket of health services totals only NIS 500 million.

Litzman told the committee, which is headed this year by former health ministry director-general and current Tel Aviv Sourasky Medical Center director-general Prof. Ronni Gamzu, that he did not envy them.

“You are excellent people,” he explained to the committee which includes doctors, health fund representatives, economists, government officials and public representatives. “It is hard work, but I am sure you will succeed.”

Litzman asked the media not to write about the 70 possible drugs and other medical technologies that may be included in next year’s basket, as public pressure on the committee from the drug companies – via the news media – would be harmful. Sessions until the end of December are open to the press, with limitations.

As for criticism, he has tried to avoid publishing details of his meetings as minister – which included some with representatives of tobacco companies and other lobbyists. Litzman said he had “nothing to hide” but since he spends “so much of my time with patients who need help, I don’t want personal details to be made public.”

Commenting on complaints about delays of his plan to require food companies to attach green or red stickers to their products representing what is healthy and what contains high amounts of fat, sugar and salt, the minister said that he would succeed despite pressure by companies and opposition from various other ministries.

Health Ministry director-general Moshe Bar Siman Tov, a former head of the Finance Ministry’s budgets division, said that today’s medical technologies are much more expensive because their development is more costly and often involves personalized medicine requiring genetic tests. When asked why, with himself and other former Treasury officials now in the Health Ministry, the Finance Ministry has not been persuaded to automatically expand the health basket by 2% per year, neither Litzman nor Bar Siman Tov commented.

Gamzu said decisions on what to add to the basket are made not only in the last three months of the year, but by a ministry team headed by Dr. Osnat Luxenburg, Medical Technology and Infrastructure Administration director that works throughout the entire year.

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