“The first request that Undersecretary Gemmato will receive is to allocate more resources: without them, it is difficult for the Solidarity Fund, with one million euros, to be able to do much and for the National Plan to be able to concretely help patients”. So the honorable Maria Elena Boschi of Italia viva-Azione, member of the VII Culture, science and education Commission of the Chamber of Deputies, promoter and president of the parliamentary Intergroup for Rare Diseases, in her speech this morning in the Senate, during the presentation of the VI Annual report of the Orphan Medicines Observatory (Ossfor).
“We wanted to reconstitute the Rare Diseases Intergroup with colleagues from all parties to continue the work carried out in the last legislature, for which I thank Senator Binetti and the colleagues who have achieved important results – says Boschi – We have to take up the baton and implement the consolidated law on rare diseases, which the report places as a central and priority element. In the last legislature we approved an important law, but it is like having a Ferrari parked in the garage, a powerful tool, but if we don’t turn it on, it is as if we hadn’t done anything. The implementing decrees are missing and we are at the Government’s side in this, especially for the new National Plan for rare diseases and also a strengthening of the Solidarity Fund. The real cornerstone of the report are the resources, because the proposals, plans and suggestions need financial backing”.
“We are worried about health funds – underlines the honorable member -. It is no secret that I, like others, have committed ourselves to ensuring that the Government has access to the Mes, 37 billion euros. A different choice was made, also by previous governments, and we have to deal with the resources we have and which, unfortunately, are not enough, if we want to be a little ambitious and look up a bit. I live every day next to a person with a rare disease and I believe that many patients feel alone, unacknowledged: a situation that creates emotional frustration”.
On the Pnrr, the National Recovery and Resilience Plan, “the report – Boschi points out – offers many possibilities, some even at no cost, compared to choices already made. Above all, the theme of digitization. Regardless of the funding of biomedical research, on the opportunities offered by the Pnrr on digitization, the document has important insights, like a magnifying glass”. As parliamentarians “we are aware of problems and priorities. The report – he continues – gives us objective elements for evaluating the most informed choices, but it is also a tool, and above all the part on the Pnrr is an important toolbox, to give a different framework to resources already allocated”.
The part on orphan drugs “is very significant – the Honorable specifies – We can say we are satisfied with some things, such as access to treatment and reimbursement times: we are not in the last places. But the times for introduction are still too long on the market of new drugs and the timing is not secondary because it is a question of life expectancy and quality. A greater commitment is needed on this “. On the role of companies, “when we had government responsibilities – recalls Boschi – our commitment was for the pharmaceutical industry, important because it changes people’s lives with research and drugs, but it is also an important piece of Made in Italy of our country, one of the excellences of our country which has an important impact in terms of growth”.
“I close with a concern that I underline and that the report highlights: the heterogeneity at the regional level of access to medicines, reimbursements, treatment and assistance – continues the Honorable Member – The regional gaps, with unchanged constitution, must find an overcoming in a coordination work in which the State and the central government must act as guides to guarantee all citizens the same rights regardless of where they live, and to avoid mobility towards another region, which has a great impact on the quality of life and it involves an economic burden. I’m turning on an alarm bell because I know that differentiated autonomy will concern other issues, but be careful to prevent the differences from spreading. We try to work – Boschi explains – so that all citizens have the same rights in the primary issue like health”.
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