From cancer networks to new treatments: patients' voices can wait no longer

For the approximately 4 million Italians who live after a cancer diagnosis and the 390,000 who receive a new one, the real risk is that they will still only have rights on paper. After years of battles, the patients' voice has become a protagonist in health policy decisions, and indeed after the last budget law, a real right and duty has been introduced to listen to it by both the Ministry of Health and the Drug Agency in all their most important decisions: from programmatic strategies to the approval of new therapies for cancer patients. It is a pity, however, that up to now there is no trace of the right and duty to involve patients' associations - the regulations and the activation of the Registry (the Ruas) are lacking - as are the other commitments made by the Ministry and the Regions on this front, which have remained unimplemented or applied in a patchy manner amidst the shifting of competences and the absence of implementing decrees. The result is experienced by cancer patients in their daily lives: barriers to access to care, inequalities in services, and discrimination in the possible social benefits to which they would be entitled often remain. This is denounced without mincing words in the 18th Report on the welfare condition of cancer patients presented in Rome on 14 May as part of the 21st National Day of the Cancer Patient promoted by the Favo, the Italian Federation of Voluntary Associations in Oncology, which brings together more than 200 associations with 25,000 volunteers and 700,000 members throughout Italia.

Our country, from the regulatory point of view, is an excellence in terms of rights: suffice it to think, for example, of the approval of the law on oncological oblivion, which protects the cured against any discrimination in taking out a mortgage or taking out insurance. But it is in the everyday reality of patients that the greatest flaws are to be seen: perhaps the most emblematic case is that of the National Oncological Plan 2023-2027, which one year before its expiry has still not activated the National Regulatory Board where the involvement of patients' associations is envisaged, and which has paralysed the monitoring and control functions to date, making it impossible to verify the actual allocation of resources (10 million a year). Similarly, the General Coordination of Oncology Networks has been at a standstill for at least a couple of years. Despite the first resolution approved in 2024, the body is still not active and thus the Ministry of Health finds itself unable to know the real state of the Networks and to intervene with incentives or corrective measures on local shortcomings and the dissemination of best practices. These are not mere bureaucratic fulfilments, because understanding the state of health and the spread of the Oncology Networks at the regional level is a fundamental step in order not to let the only real objective of the system fail: the reduction of inequalities and waiting lists. In these networks, patients find the access points for deciding which path to follow in the event of a suspected diagnosis, the centres where they can have examinations and tests, and where they can undergo treatment and follow-up. With the associations that, where possible, have designed the oncological Pdta (diagnostic and therapeutic pathways) together with the clinicians, including support in the management of administrative paperwork and socio-health and employment protection.

At the moment, according to the picture taken by Favo, the situation is made up of profound divergences between the Regions: some have developed advanced models of involvement with permanent tables, formalised procedures and participatory evaluation systems; in other realities, involvement is also present, but linked to the sensitivity of individual clinicians or to the capacity of associations; finally, in a large group of Regions, participation is still limited or not formalised, with little transparency on decision-making processes and weak integration between hospital and territory. "Asequence of unfinished works", this, which for Favo "does not represent a mere technical hitch, but a material obstacle that prevents patients from benefiting from effective protection".

"It is ethically unacceptable that acts signed at the highest institutional levels should be emptied by an administrative machine incapable of following up on its commitments," said Francesco De Lorenzo, president of the Favo. "Cancer is not only a clinical challenge: it has a social impact that involves patients and caregivers," said Elisabetta Iannelli, secretary of Favo. Despite the protection provided by the National Health Service, the disease generates financial toxicity, which forces difficult choices. Family savings are often eroded to cover the costs of forced health mobility, recourse to private health care for visits, examinations and assessments, or non-reimbursed home care'.