“When the media gets involved, there will be more donations,” says the Health Minister optimistically.
The government’s fund for acquisition of expensive medicines for severe illnesses, which are not part of the list of medications paid by the Croatian Institute for Health Insurance (HZZO), has so far collected just 27,388 kuna, reports Jutarnji List on January 18, 2018.
After spending funds donated for the treatment of high-risk neuroblastoma and spinal muscular dystrophy among children, problems with the financing of these and other new therapies has appeared once again. According to the Ministry of Health, 16,788 kuna has been collected for Spinraza and 10,600 kuna for Dinutuximab Beta. Interestingly, the largest amount, 10,000 kuna in two separate payments, has been donated by a single citizen, which means that all other donations put together amount to 7,388 kuna. The Health Ministry said that the lowest contribution was 38 kuna.
Zoran Bahtijarević, director of the Children’s Hospital in Zagreb, said that the success of the therapy for one of the drugs would not be known for a few years since the experience is still very limited and the drug has so far been applied in Europe to a minimal number of patients.
These are two new and costly drugs that have drawn a lot of attention last year because the medicines are not on the HZZO list and therefore patients and their families have to pay for them. Namely, both producers, Biogen and Apeiron, have not yet submitted a request for inclusion to the HZZO list. Also, that is the reason why the prices of these drugs are so high since there has been no price negotiation with the producers.
Independently of this financial aspect of the story, parents have understandably demanded urgent treatment for their children, and at the same time, the Ministry of Health sought a way to pay for the “extraordinary” therapies from the state budget, as this was the only option for the children to get the drug. After the public controversy, the government paid from the state budget additional funds needed for the medicines to become available.
However, Health Minister Milan Kujundžić finally decided to set up a fund for the so-called expensive drugs which are not on the HZZO list, with funds being donated by citizens and companies. The government is expected to match the donated funds from the budget. The Minister said it was a model which existed in France, hoping that many will be willing to donate from their personal funds. However, just a little more than 27,000 kuna has been collected so far, which is not enough for just a single dose of expensive medicines.
The calculation shows that, for the four children who are currently using Spinraza, 15 million kunas will be needed, while the five children receiving Dinutuximab Beta will need almost nine million kuna.
Reacting to the news about donations, the Health Minister said that more contributions were expected. “When the media gets involved in a positive way, there will be more donations.” He added that the pharmaceutical industry should also be asked to participate and cover part of the cost of expensive medicines.
The government’s idea to ask citizens for donations for expensive medicines caused an uproar among people who already pay some of the highest taxes in Europe. Many called on the government to pay for the medications from the budget, and to instead establish a donations fund for the purchase of expensive politicians’ limousines, for which money is somehow always found in the budget.