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Tailored oncology? It still remains a mirage

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Tailored oncology?  It still remains a mirage

More than 30 days to access treatment after a cancer diagnosis. This is what happens to 25% of Italians. Only 22% are routed towards a diagnostic therapeutic assistance path (Pdta); more than 73% have not received information on the possibility of carrying out a genomic test and only 15% today state that it is possible to reimburse these tests by the National Health Service in their region. And even when it is prescribed before it is performed at least 15 days pass. These data are already enough to understand how much precision oncology, the idea that the treatment must be tailored to every cancer patient, is still a mirage today. The photograph was taken from the “Civic Survey on the degree of diffusion and access to personalized medicine in oncology” promoted by Cittadinanzattiva – starting from a working group made up of associations, specialists and institutions – with the aim of monitoring the degree of knowledge , diffusion and access to personalized medicine in our country.

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The survey took place between September and November 2021 and involved – through an articulated questionnaire – 372 citizens (of which 50% had direct or indirect experience with a tumor pathology), 51 General Directorates of health facilities (between Hospitals Universities, Hospitals and Hospitals) and 11 Regional Health Departments (Piedmont, Tuscany, Valle D’Aosta, Marche, Campania, Veneto, Sicily, Molise, Umbria, Puglia and Sardinia). “The survey shows that today we cannot speak of homogeneous and equitable access to personalized medicine in our country – declares Valeria Fava, head of health policies at Cittadinanzattiva – and the low level of knowledge and awareness on the part of citizens is equally evident. “.

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“As regards access to genomic tests for breast cancer and Next Generation Sequencing tests, it is urgent to include them in the updating list of the LEA, still under review, and to accelerate the regional establishment of Molecular Tumor Board (MTB) in the context of regional cancer networks “, says Fava. In fact, the survey shows that access to these tests, in the absence of the unifying role of Lea, is uneven across the territory and a source of major inequalities, although ad hoc national funds have been allocated to guarantee their delivery. “For genomic breast tests – continues Fava – despite the 20 million fund, the enactment of the implementing decrees and the implementation by the Regions, we are paying a lot of bureaucracy in relation to the tenders for the purchase of the tests which actually slows down o completely prevents access in many regions. For the NGS tests, although a fund of 5 million euros has been allocated for 2022 and 2023 by the recent Budget Law, the implementation decrees and the desired dissemination are currently missing it will be heavily affected if there is no acceleration in this sense “.

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A question of fairness

To ensure that cancer patients can have the same rights everywhere, it is essential that effective Oncology Networks be formalized in each Region and PA and that pathways for access to personalized medicine are defined within the PDTAs. Only 22% of patients were offered the possibility of being treated through an oncological PDTA, compared to 44% who respond negatively and 34% who do not know. In particular, PDTAs are mainly activated for lung and breast cancer.

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Among the Regions interviewed, Piedmont, Tuscany, Valle D’Aosta, Marche, Campania, Veneto and Sicily report that they have set up a Molecular Tumor Board (interdisciplinary team of experts that provides a prognosis and chooses a personalized therapy already approved or in the process of experimentation clinic), while Molise, Umbria and Puglia have plans to establish it. Sardinia has not yet instituted it. We are also behind in telemedicine: as many as 88% of health structures declare that they have not activated patient assistance services through telemedicine. About 64% declare that they have participated in a refresher course on new technologies related to personalized medicine.

In the light of the survey results, Cittadinanzattiva puts forward some proposals to ensure that precision oncology becomes a reality for everyone. Starting from the guarantee of Diagnostic Therapeutic Assistance Pathways (PDTA) specific for the various oncological pathologies and assistance needs (of a physical and psycho-social nature) to the inclusion of genomic tests and Next Generation Sequencing (NGS) in the level update list Essentials of Assistance (LEA) at least for the main tumor pathologies. Tests that must be made accessible thanks to funding allocated to date which must however become operational in order to make them permanent and monitor their use. Finally, it is necessary to provide and guarantee computer networks and databases for an easy and fast exchange of information between health professionals and to accelerate the establishment of the Molecular Tumor Board (MTB) within the Regional Oncological Network.

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