A baby with a rare disease will be cared for to expenses from the Emilia Romagna region in the United States with a innovative therapy. «Five millions of euros that they will guarantee to this child to live, rather than Of die. It’s a choice of field”councillor at the healthcare, Raffaele Doniniwhich comments on the decision Of allocate the necessary resources to guarantee to a child Of 6 years affected From one peroxisomal pathology in the more severe formwhich the parents discovered by chance a year ago, carrying out tests after learning that the little boy’s uncle was suffering from a mild form of the same disease.
“It’s a rare case – explains Donini – which is inside one strategy that we we want to pursueMeaning what cure all the people That need Of innovative pharmacological treatments. L’Emily Romagna spends every year in average 200 million more of the previous year for innovative drugs That they are needed to save lives. Marco (not his real name) doesn’t know it, but in two years he might no longer be there – continues Donini -. In a silent, invisible way, a very rare, lethal disease has accompanied him since birth, ready to enter the scene at any moment. And that moment has arrived. Yes, because Marco, who lives in Emilia Romagna with his family, has one illness that yes manifests itself environment to the 6 years, leads there cerebral demyelinationin other words a thinning of the layer That covers the nerve fiberswhose outcome is progressive, quickAnd mortal In the tour Of two years from the moment in which it manifests itself».
There possibility Of to survive for Marco it is a drug product And marketed from a’agency US pharmaceutical: oneinfusion from to execute in the’hospital private from the same pharmaceutical company In the Massachusetts. “We we wouldn’t want to a health system maintained in check give her large pharmaceutical companies – attack Donini -. This is a drug which it was accepted fromEmma to European levelbut theindustry he withdrew it from the market And administers it only privately in the United States».
From here the decision Of support financially there familywith the necessary resources for the therapyThe voyagethe hospitalization: “our choice era Between you hate don’t bother us of the caseWhy we are not inside the essential levels Of assistanceor in conscience do so and even overseas yes can find those drugs That can give there life to this child. It’s a choice Of field – he insists Donini – for a public health system universalistic That leaves no one behind And it does not force citizens (I wonder which ones might?) a spend millions of euros for one life-saving pharmaceutical treatment».
Donini concludes with a recall at the State: «Emilia Romagna is there, it fights for this and I believe it is also for this right to ask at the State, not to the governments that passThe theme from the sustainability both of Bottom for the more innovative drugs both in general of sanitary system». Already, Sin just that i governments Of center left And technicians of the last twenty years have essentially dribbled there question, preferring there politics of the cuts to that of retraining from the public spending.
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