Croatian Plan to Fund Costly Children’s Drugs ‘Failing’
Illustration. Photo: Pixabay/qimono |
Parents of children suffering from rare illnesses in Croatia say the Health Ministry’s plan to gather money for expensive drugs through citizens’ donations is failing.
To part-finance the purchase of these drugs, in early December, Heath Minister Milan Kujundzic announced the opening of a fund to which citizens could donate money. The private donation would then be matched by the same donation from the state.
But media reports on Thursday said that less than 4,000 euros had been gathered from donations to treat neuroblastoma – a type of nerve-tissue cancer – and spinal muscular atrophy.
Since doses of Spinraza, a drug for spinal muscular atrophy – and Dinutuximaba Beta – for neuroblastoma – are very pricey, costing about 85,000 and 47,000 euros per dose respectively, parents claim the plan was wrong from the beginning.
Vlatka Jarni Grmaca, vice-president of Hummingbirds – an association of parents of children suffering from such rare illnesses – told BIRN that the plan “was wrong from the start”.
“The minister announced ‘a French model’ according to which citizens would donate, while the government matched their donations. However, having in mind the general position of citizens toward our health system … it wasn’t a properly set plan from the beginning,” she said. “Whatever our politicians try to copy-paste never succeeds,” she added.
Kujundzic told the media on Thursday that the fund was only “an account” opened for citizens, while the government would directly purchase the drugs patients that “have expert, scientific and empirical indications” of success with the mentioned illnesses.
The ministry opened the account outside the Health Insurance Fund, HZZO, because the administrative process that child patients have to go through to access this fund often lasts for years.
“So far, this is only a bit of money [raised], but when the media gets involved in a positive sense, more people will be sensitised [to the need to donate],” Kujundzic predicted.
He added that the pharmaceutical industry also needed to get involved and needed to lower the prices of drugs.
The drugs are so expensive because their producers have not applied to have their products put on HZZO’s list, during which process the price might be lowered.
Hummingbirds says all these expensive drugs should be covered from the state budget, however, noting, among other things, that the ministry has decided not to fund treatment of children with these illnesses who already have to breathe with the help of respiratory machines.
These children have been cut from the funding since their chances of recovery are seen as low.
The first year of treatment with these expensive drugs is the most expensive, because a child needs to receive five to seven doses of the drugs; in the second and later years it receives three or four doses.
Jarni Grmaca said the number of children with spinal muscular atrophy in Croatia is 39, four of whom are receiving treatment from Spinraza.
She also explained that of the total number “between ten and 15” are breathing with the help of respiratory machines and therefore are not entitled to receive drugs collected through donations.
In the last year, the government had to cover the HZZO’s considerable debts of 270 million euros.