Blood cancers: a ten-point plan for uniform access to care
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The latest generation genetic sequencing techniques (NGS) and new drugs of biological origin give new hope to patients with blood cancer, but these innovations remain the prerogative of a few because there are too many differences in care and there is still no uniformity of access to the highest standards of care throughout the country. To bridge these gaps, the ‘Bridge the gap’ project was launched, which set itself the objective of identifying the existing critical issues in the management of both the patient with the disease in the acute phase and the long-surviving patient in order to then develop an intervention plan concrete. All involving various stakeholders in the sector, from haematologists to hospital pharmacists, patient associations and general practitioners. This was discussed in Rome during the National Conference entitled “A new plan for better care of patients with Hematological Malignancies” created by ISHEO, in collaboration with “La Lampada di Aladdin ETS”, with the patronage of the Hematological Neoplasms Group of the Federation of Volunteer Associations in Oncology (FAVO).
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The ‘Bridge the gap’ project
More than 35,000 new cases of blood cancer are recorded in our country every year. Opportunities tend to improve for these patients, but there are still too many differences in care throughout the country. From the meeting of clinicians and patient representatives, made possible by the non-conditioning support of Astellas Pharma, AstraZeneca and Roche, three points emerged on which it is necessary to intervene: home assistance, psychological-nutritional support and strengthening of the fundamental role of the caregiver. The “BRIDGE THE GAP” project, the central theme of the conference, set itself the goal of defining the key points of assistance in a structured way. The goal is to create an operational and uniform intervention plan throughout Italy and involving all the subjects who come into play in taking care of these patients.
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Ten points to start from
Ten points indicated in the operational plan of the ‘Bridge the Gap’ project but the need to recognize everyone’s right to the best care without geographical distinctions prevails over all, an aspect on which Senator Tilde Minasi, member of the X Commission of the Senate also intervened della Repubblica: “I know the phenomenon of medical migration very well since I come from Calabria which is at the top of these journeys of hope and I know that they cause enormous suffering not only for the sick person but also for the whole family on which a burden also falls economic and social. Projects such as ‘Bridge the Gap’ and the operational plan presented also give us institutional representatives the possibility of better understanding what are the main shortcomings, weaknesses or strengths of the various areas of Italy in order to then act concretely with the common goal of standardizing the level of assistance on the national territory”.
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More communication between stakeholders
The intent of the experts gathered at the conference is to ensure that the intervention plan does not remain just a book of dreams but becomes reality. “Looking at the world of hematological neoplasms as a ‘laboratory’ of analysis – he declares Davide Integlia, General Manager ISHEO – we have involved various stakeholders in the sector, from hospital pharmacists, to Patient Associations, to General Practitioners, in order to frame the existing gaps in patient assistance at all levels. We realized that the matrix of these gaps is precisely the inadequate governance of relevant health information, and the failure to foresee roles and related responsibilities in information management, above all to bridge the oceanic gap between specialist medicine and local medicine. It is time to take a step forward on this front, and the BRIDGE THE GAP project provides a clear Action Plan to overcome the gaps that have emerged in the management of patients with blood cancers. The reform of local medicine, together with the resources of the PNRR, can give a concrete answer in this sense”.
The innovation of therapies and organizational aspects
Today, scientific research has managed to bring therapeutic innovations to the patient’s bed that really manage to change the natural history of the disease. And yet, victory cannot be claimed because organizational problems and lack of resources represent a very strong limitation. “Advanced therapies are complex treatments that require a high level of expertise to manage them,” he explains Roberto Cairoli, Associate Professor of Hematology, University of Milan-Bicocca Director of SC Hematology at the Department of Hematology and Molecular Medicine Niguarda Cancer Center. “It is necessary a blood center that has experience in the field of hematopoietic stem cell transplantation and above all that meets the European accreditation requirements for such activities. These conditions constitute the minimum prerogative so that a multidisciplinary and multiprofessional organizational system can be created, essential for the administration of innovative cellular therapies”.
The hospital-territory synergy
One of the major nodes is local medicine, which is essential to be able to build a homogeneous monitoring system across the Italian regions and not leave patients alone once they leave the hospital. “Therapeutic innovation in oncological hematology – he adds David Petruzzelli, president of ‘Aladdin’s Lamp ETS’ – the history of various blood diseases is changing, but, in order not to lose their value, we must combine it with a quality of life that does not only take into account the clinical aspects. It is necessary to implement and harmonize the relationship between Health Institutions and Patient Associations, bearers of that ‘lay science of those who have been there’ so useful for improving the system, in all the nuances that the treatment path outlines. The synergy between hospital and territory, as envisaged by the National Oncological Plan and the PNRR to have treatments closer to citizens, must also include greater involvement of the general practitioner, especially in the management and monitoring of long-term survival “.
Get online
During the conference, the need to act in a multidisciplinary way through the implementation of the Networks strongly emerged. “Since its establishment, our Foundation has been fighting to keep all Italian hematology departments online – he adds Marco Vignetti, president of the GIMEMA Foundation. They must be connected to the large hematology centers in such a way that, in a homogeneous way, all patients can enjoy the best possible therapies. However, when there is no real need to go to the hospital, it is vital that home assistance plays a crucial role. Guaranteeing such assistance to every patient is a sacrosanct right and the Foundation has been fighting for a long time to make this happen”.
The advantages of the electronic health record
The Cassation lawyer of the Rome Bar, ICTLC Founding Partner and President of the Italian Institute for Privacy and Data Enhancement (IIP), also spoke at the national conference. Luca Bolognini, who states: “The new Electronic Health Record will be a treasure for healthcare because it will contain clinical data relating to the entire population, representing an invaluable information value. The full use of the EHR will provide concrete opportunities for improvement in terms of quality of care and assistance for patients, but also of scientific research: the privacy legislation will have to be balanced with these objectives”.
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