Multiple myeloma, innovative treatments within 3 months but for 80% of patients out-of-pocket costs

The haematological system in Italia is confirmed as a clinical excellence in the treatment of multiple myeloma, with 92.5% of centres guaranteeing access to innovative therapies in less than three months, but at the same time it shows profound organisational and social fragility: the picture is one of a hospital network in distress, in which 72.5% of facilities report an overload of patients and 65% a serious shortage of staff. There is also an obvious problem of territorial fragmentation, with 45% of the centres still lacking a specific and formalised diagnostic therapeutic care pathway (Pdta).

Those paying the price for these structural deficiencies are above all the patients and their families, particularly on the psychological assistance front, a right which 47.5% of the wards struggle to guarantee and which leaves exactly half of the patients unsatisfied. The impact of the disease also overwhelms the economic and logistical sphere, forcing 81.1% of patients to incur direct out-of-pocket costs, mainly related to transport to the places of treatment. The burden of daily care falls totally on family caregivers, who in 74.3% of cases are women and in the majority (71.5%) of working age, under 60. This commitment has forced more than 37% of them to leave or drastically reduce their professional activity, generating very high levels of stress and fatigue in almost 86% of carers. All this takes place in a context in which the 'Multiple Myeloma Patients' Bill of Rights' appears to be an instrument of protection still unknown to 87% of those concerned.

These are some of the data that Cittadinanzattiva has presented with the Position Paper "Multiple Myeloma: Rights, Expectations, Responses", an independent project realised with the non conditional contribution of GSK. The document was created with the general objective of analysing the real level of implementation of rights and the quality of the care pathways in Italia, combining and comparing the clinical-organisational dimension of the centres with the experiential dimension of the patients and their carers. One of the objectives is to make the institutions aware of the importance of adopting health policies that guarantee true equity of access to care throughout the country, recognising the vital value of scientific innovation. Lastly, the aim is to promote the recognition of this pathology as a condition that requires homogeneous pathways at a national level, pushing for a clear improvement in care through the strengthening of territorial medicine and the constant monitoring of the application of the principles enshrined in the Charter of Rights.

"Our National Health Service has achieved extraordinary goals on the clinical and therapeutic innovation front, but today's challenge is no longer exclusively therapeutic: it is above all organisational, relational, and social,' says Valeria Fava, Head of Health Policy Coordination at Cittadinanzattiva, 'and the data clearly tell us that the goal is no longer just to cure better, but to simplify access to care and establish homogeneous Pdta. Patients ask to be accompanied through the complexity of the disease with stable psychological support, while caregivers, the real pillars and invisible infrastructure of the system, need practical help, time and job protection. We cannot allow the quality of life and the enforceability of rights to depend on the initiative of individual facilities or the resources of the family. It is time to transform existing good practices into a widespread and uniform standard of care, making the Charter of Rights a fully integrated instrument in care settings'.

The Position Paper concludes by outlining a series of proposals and recommendations - eight in total - addressed to national and regional institutions, health professionals and civic organisations: