Negotiations on the reimbursement of the drug zolgensma for SMA, i.e. spinal muscular atrophy, have passed to the stage of the Ministry of Health, Maciej Miłkowski, deputy head of the ministry, announced on Tuesday. As he said, the previous day he had already had several hours of talks with the producer. – We agreed to further negotiations in two weeks – he said. – It is still quite a distance, but the two sides want to come to an agreement – added Miłkowski.
Last week, Undersecretary of State in the Ministry of Health, Maciej Miłkowski, informed that the previous price negotiations on the drug zolgensma, used in the treatment of SMA – i.e. spinal muscular atrophy – ended with a negative reimbursement decision due to the prohibitive producer price. Zolgensma is a new therapeutic method based on gene technology. The cost of administering the drug for one patient is PLN 6-7 million.
The deputy head of the Ministry of Health also said that an agreement was reached on the content of the drug program, but financing such a reimbursement would make it impossible to reimburse other drugs in rare diseases.
Maciej Miłkowski: negotiations passed to the ministry stage, more in two weeks
During Tuesday’s press conference in Szczecin, Deputy Minister Miłkowski was asked about government talks on the reimbursement of the drug for SMA.
He recalled that the Ministry’s Economic Commission presented a “negative report on the negotiations”. – Now the negotiations have moved to the stage of the Ministry of Health, I am after yesterday’s several hours of negotiations with the manufacturer. We agreed on further negotiations in two weeks – he informed.
He added that the talks were taking place “in a very good atmosphere”. – We are trying to reach an agreement, it is still quite a long way off, but the two sides want to come to an agreement. I’m not closing anything – he assured. As he added, “the negotiations take place at the highest level – at the level of the board (producing the preparation – editor) of the Novartis company, including those responsible for this product.”
He pointed out that “the company would also like Poland to be the country that finances” the drug, especially because “we have one of the best patient detection systems”, ie newborn screening for SMA.
Spinal Muscle Atrophy. Nearly 1,000 patients with SMA in Poland
Spinal muscular atrophy, or SMA for short, is a severe disease from the group of neuromuscular diseases with a genetic basis. Due to a genetic defect, neurons in the spinal cord, which are responsible for the work of the muscles, die, which gradually leads to their atrophy. The effects of therapy are the better, the sooner the disease is detected.
SMA is the most common genetic cause of death in children under two years of age, unless treated. It is estimated that in Poland there are approximately 850–900 SMA patients, and each year approximately 50 children are born with this disease.
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