Cancer has no political color and that is why everyone – regardless of the party they belong to – must take on it in a completely transversal way. This is the meaning of the new Legislative Agreement 2022/2027, signed by the 43 Associations of oncology and oncohematology patients of the Group ‘Health: an asset to defend, a right to promote’ with all the political forces vying for the elections. The new Legislature Agreement was presented and signed today in Rome, renewing the common commitment of patient associations and party representatives, with the aim of reforming the parliamentary intergroup “Together for a commitment against cancer”, Which has already operated in the last two legislatures, in a completely transversal way to the political spectrum.
Funds for 13 million euros and 170 thousand hours of work: this is the value of volunteering in breast cancer
by Tiziana Moriconi
Twelve points for a transversal commitment
The ‘pillars’ on which the new Legislature Agreement is based are 12 including access, innovation, taking charge, management of chronicity and involvement of the Associations in decision-making tables. A real programmatic manifesto that contains the critical issues and priority areas of intervention in the fight against cancer in our country, from which to start again to improve the quality of life of the more than 3 million and 600 thousand Italians living with a solid tumor or blood. “The new Legislature Agreement is the natural continuation of the fruitful collaboration between the Group Associations and the political forces – he declares Annamaria Mancuso, president of Salute Donna Onlus and Group Coordinator. From 2014 to today we have created a close dialogue with the institutional representatives of the Government, Parliament and the Regions to promote actions aimed at better taking charge and care of patients with cancer ”.
Right to oncological oblivion: the national campaign ‘I am not my tumor’ starts
by Irma D’Aria
Around 1,000 new cases of cancer are diagnosed every day in Italy; however, survival rates are gradually increasing: 65% of women and 59.4% of men are alive five years after diagnosis (Cancer numbers in Italy 2021 – AIOM, AIRTUM). The scenario determined by the SARS-CoV-2 epidemic has caused a slowdown in the implementation of screening programs, with effects not yet fully understood on the diagnosis of oncological diseases and on the outcomes in the near future. “We do not intend to stop, on the contrary we must continue the work at full speed because the health emergency experienced in the last 2 and a half years has shifted attention a little but at the same time created further critical issues. The health and rights of cancer patients must become a priority on the agenda of all parties and of the next government ”, continues Mancuso.
Promote early diagnosis
Enhancing access to oncological screening for the early diagnosis of tumors is certainly one of the first points to work on, renewing and modernizing the instrumental and technological equipment for diagnostic screening and adopting new communication strategies to ensure the adhesion of the population. “Early diagnosis and timely patient care are strategic moments that can mark the quality of the therapeutic path and the outcomes of the disease – he comments Gianluca Pistore, President MelanomaDay. “Sometimes these diseases are subtle, difficult to diagnose, and in the early stages there are no signs or symptoms that can make you suspicious. This is why we need to invest in screening, strengthen them and improve their ‘culture’ and dissemination throughout the territory “.
National Cancer Patient Day: the 5 points on which the future of patients is at stake
by Tiziana Moriconi
Innovation accessible for all
Another key point concerns access to innovation: not only therapeutic, but also technological, promoting the modernization of machinery and the digital transition, thanks also to funds from the PNRR. And by improving access to the latest generation of genetic and genomic tests, which favor a personalized and precision medicine approach. “Molecular profiling and the possibility of accessing therapies linked to molecular alterations represent one of the most important innovations in oncology – he explains Laura Di Lauro of Anture, National Association of Kidney Cancers. Today, broad profiling tests are used, especially Next Generation Sequencing (NGS), to investigate the presence of multiple molecular alterations, even in patients with advanced or metastatic cancer. It is essential that these tests are made available in more and more health facilities, throughout the national territory and that their reimbursement is guaranteed “.
Another important point on which everyone’s commitment is needed is that which concerns the phase following diagnosis, when a multidisciplinary and structured approach is needed that favors the management of the patient by a team that deals with all aspects of the disease, including the psychological one (with the figure of the psycho-oncologist). “The assistance and treatment of patients with lung cancer, but also with other oncological pathologies, must be entrusted to multidisciplinary teams – he comments Bruno Aratri, president of Ipop Onlus – Together for Pulmonary Oncology Patients. “Concrete experience has shown that the battle against cancer is much more effective if it is faced with the structured involvement of the various clinical specialties”.
Oncological networks and local medicine
Among the words that often fill one’s mouth without giving them substance are the Diagnostic Therapeutic Assistance Pathways (PDTA) and the Oncological Networks. Today, with the necessary reorganization of territorial medicine, it is possible to really activate them. “A timely, integrated and multidisciplinary management according to the clinical-care needs of each patient is fundamental for a better ‘organizational’ management of the disease”, he adds. Paolo Viti, president of Fiagop, Italian Federation of Pediatric Oncohematology Parent Associations. “It should also be leveraged on new settings such as community homes and community hospitals, with the full involvement of general practitioners, pharmacists and community nurses to create the connection and continuity between hospital and territory and improve access to therapies “.
Right to work and to be forgotten
During, but also after the illness, the patient must have the possibility of continuing to make his own contribution to society and be able to be reintegrated at work and social level. For this reason, the Group has always been active on the issue of labor rights of people with cancer and the right to be forgotten. “Cancer does not only pose health problems to the patient and his family, but also economic and social problems,” he says Riccardo Perrone, vice president of the Lorenzo Perrone Association. “This is why we need to support the rights of cancer patients in the community and in the workplace. Today, a former cancer patient is discriminated against in accessing financial and insurance services and forced to pay all his life for the blame for becoming ill: this is truly intolerable ”.
The involvement of patient associations
But the new Legislature Agreement could not ignore another fundamental point for all those who have to deal with a tumor: the involvement of patient associations in the decision-making tables concerning health choices in oncology. “In recent years, the role of patient associations in the health system has grown and consolidated thanks to their experience and expertise, contributing to the construction and development of some of the most important health policies”, concludes Annamaria Mancuso. “It is therefore essential to involve patient associations in the implementation and verification of the National Oncological Plan, the National Chronicity Plan, in the reorganization of local medicine and in the development and evaluation of drugs”.