Facchin (Regions): “Despite Covid sick people never abandoned”

The pandemic has affected everyone, with a greater impact on the most fragile categories: the elderly, people with previous pathologies and rare patients. Yet, despite the serious inconvenience suffered by the hospital network, the Regions have managed to give an extraordinary response through an increase in services in the area and in particular in Integrated Home Assistance (ADI). This is what emerges from the data collected through a survey conducted on 15 regions of the Interregional Rare Diseases Technical Table and from the analysis of the administrative databases of the Lombardy Region, which form a fundamental part of the 5th Ossfor Report created thanks to the unconditional contribution of Alexion, Amicus Therapeutics , I asked Global Rare Diseases, Gsk, Janssen, KyowaKirin, Roche, Sanofi Genzyme, Sobi, Takeda and Vertex and presented this morning to the press. “Despite the dramatic and emergency moment, the rare patients have not been left to fend for themselves – explained during the presentation Paola Facchin, coordinator of the interregional table for rare diseases Health Commission Conference of Regions -. The Regions, despite the limitation to access in fact, in outpatient structures managed by hospitals, they have put in place alternative organizations to the traditional ones to allow continuity of care, especially for the chronically and complex patients or in any case in a serious situation. This has led to a renewed interest in territorial organization and an acceleration in the use of remote assistance and home assistance methods, up to the distribution of products for treatments that could not be suspended or supplied directly from pharmacies open to the public. “The increase in the use of ADI is amply illustrated in the chapter” Home care for rare patients in Ital ia “conducted by the Interregional Rare Diseases Technical Roundtable at the Health Commission, a key partner in the work carried out by Ossfor in 2021. The survey was carried out through the monitoring of 45.433.594 million inhabitants (76.2% of the population) and allows make a comparison between 2019 and 2020, and therefore the before and during the pandemic. It emerges that “in 2020 – explained Facchin – out of 320,101 subjects registered as rare patients, 10,762 received integrated home care, not all rare patients in fact require complex home care, and this figure is increasing compared to the pre- pandemic when that figure was equal to 9,661 subjects. The rare patients followed in Adi represent 1.6% of the total number of patients to whom the Adi is guaranteed. Of the total of rare patients, 3.4% receive home assistance, a value up by 0.1 percentage points compared to 2019 “. 45% of rare patients in Integrated Home Care “are affected by rare diseases of the central and peripheral nervous system – added Facchin – 9% have congenital malformations and 8% are affected by rare tumors of the blood and haematopoietic organs. Also in this case there is a choice that depends not only on the profile of needs but also on the type of patient. Very important efforts have been made which have affected all the Regions and which must continue ”. Naturally – it emerged during the presentation of the Report – even the rare patients have suffered, like all fragile people, the impacts of the pandemic. This impact is also reflected in the analysis conducted on the administrative databases of the Lombardy Region which show a 2.8% decline in the prevalence of people with rare disease between 2019 and 2020 and a contraction in per capita health expenditure of -6, 9%. This decrease in expenditure is related, in order, to a reduction in expenditure for ordinary hospitalizations (-3 percentage points compared to 2019), ‘other services’ (-1.6 percentage points), day hospital admissions (-0.5 percentage points) and laboratory analysis (-0.2 percentage points). Only expenditure on drugs (+5 percentage points) and prostheses and aids (+0.3 percentage points) increased compared to the previous year. Two facts that are certainly linked to each other. The decrease in the prevalence of patients could be linked to several concomitant factors: on the one hand the higher mortality of these patients, which finds its ratio in the higher general mortality of ‘fragile’ subjects, and on the other hand to a probable slowdown of the diagnosis, for the postponement of laboratory and instrumental tests aimed at or even for the slowdown of all the bureaucratic procedures necessary to obtain exemption for rare diseases, or even linked to a reduced influx to administrative offices during lockdown periods.