One in two patients declares that with the pandemic the criticalities in accessing the diagnosis and treatment for their pathology have increased. Specialist and diagnostic visits are still being postponed and delayed, while the difficulties in activating integrated home assistance and in having the invalidity or handicap are recognized. It is doing better on the prevention front, thanks to the recovery of some delays in scheduled screening and ordinary vaccinations. Furthermore, from the pandemic there is a positive impulse to telemedicine. Private costs are rising for one in two patients and one in five has been forced to give up treatment for economic reasons.
Together with the difficulties and requests of citizens suffering from a chronic and rare disease, there are those of family caregivers – over seven million in our country – who ask for less bureaucracy and more protection at work and, the younger, in their studies.
Covid. So it changed us forever
by Daniela Minerva
The photograph emerges from the XIX Report on chronicity policies, entitled “The cure that (yet) does not exist”, presented today by Cittadinanzattiva and created with the involvement of 64 associations of patients with chronic and rare diseases adhering to the CnAMC (Coordination National Chronic Patient Associations) and about 3000 patients, created with the support of MSD and Chiesi.
About three out of four associations report the presence of important national and regional differences in the management and care of patients: for example, only a little more than one in two (52.3%) states that disease registers are present everywhere (computerized archives with patient data) and the so-called PDTA (Diagnostic Therapeutic Assistance Paths).
Covid: for one chronically ill patient out of 2 increased criticality of care
Almost one in two citizens (48.8%) had difficulties in obtaining the recognition of the invalidity and handicap, mainly because the doctors of the commission underestimate the pathology because they do not know it, and for the excessively long time for the verification visit . 62% say the criticalities have increased with the pandemic. More than one in three (34.3%) encountered difficulties with integrated home care, and as many as 71% declared that the situation has worsened compared to the pre-covid period: in particular, there is a lack of specialized figures, or it is difficult to activate it or it is suspended at any moment.
More than one in five patients (22.7%) reports criticalities in prosthetic and integrative assistance, criticalities that have increased compared to the past in 70.8% of cases. In particular, the authorization and renewal times are too long to have aids, prostheses and aids, they are not included in the tariff nomenclator or are not suitable for personal needs.
Covid 19: the pandemic and the impact on the health of new mothers
by Lisa Cesco
“The resources that are arriving with the PNRR are precious but must be accompanied by measures that allow for their structural solidity even after 2025, starting with an adequate strengthening of health personnel, and with the creation of those that have long been priority tools but still not fully implemented to meet the needs of chronic and rare patients – he explains Anna Lisa Mandorino, general secretary of Cittadinanzattiva – First of all, it is a question of giving everywhere and uniform implementation, both at the regional level and at the company level, of the PDTAs and the National Chronicity Plan and monitoring the achievement of the foreseen objectives; to finance and monitor compliance with the Essential Levels of Assistance (LEA) throughout the territory, in order to reduce inequalities between regions and ensure equal rights for all citizens. All this is important to be done through constant dialogue with citizens and associations for the protection of patients’ rights which, in this year and a half of pandemic, have shown themselves to be a fundamental piece of the welfare of our country “.
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