Social manifesto on ‘urothelial carcinomas, an orphan disease?’

They are 95% of urothelial carcinomas, but bladder tumors, fourth in the ranking of the most frequent in the male population, remain for many aspects not adequately considered and treated. In Italy there are an estimated 30,000 new diagnoses of urothelial carcinoma a year, and currently about 315,000 people are affected by this form of cancer which affects, in 80% of cases, the male sex mainly after the age of 60. Starting from the analysis of reality by clinicians and patients, the Social Manifesto “Urothelial tumors. Orphan disease?”, Published today, is a useful tool for adequate and virtuous patient care. The path of diagnosis and treatment of urothelial tumors – as the document reveals – in addition to taking many years, changes according to where you reside and often involves a health mobility towards other regions which determines a rise in costs, as well as an evident discomfort of the patient. Today, the preservation of the bladder represents a great opportunity, but the lack of innovation in treatments – stuck at 40 years ago – and the inertia to change lead to a greater propensity for removal (radical cystectomy). The diagnosis of urothelial tumors – reads the Manifesto – can take years due to a series of factors, not least the absence of effective screening tests, feasible on a large scale, the lack of knowledge of risk factors such as smoking (primary cause) , occupational exposure to chemicals, excessive alcohol consumption, inadequate hydration to dilute and eliminate any carcinogenic elements present in the bladder, very little attention to monitoring the presence of blood in the urine (hematuria) and, finally, low knowledge of other possible but not negligible symptoms such as the need to urinate frequently or the occurrence of recurrent infections (especially in women). Of great importance is the theme of therapies that present problems both from the point of view of supply and delivery. In cases of superficial tumor, preparations in use for over 40 years (mitomycin in the low grade and Bcg in the high grade) are still used as ‘gold standard’. In infiltrating cancer, cystectomy still remains the radical solution that offers greater guarantees of healing. “To these complexities – observes Paolo Marchetti, Professor of Oncology and scientific director of Idi-Irccs, Dermopathic Institute of the Immaculate Ircss – is also added the fact that the therapeutic choice is not always shared among the specialists who, for various aspects, treat the patient with urothelial cancer: urologists, oncologists and radiotherapists. The approach seems, in fact, more based on a multidisciplinary criterion rather than a that of interdisciplinarity which would allow, instead, to create a network between the different clinical figures involved. This last difficulty, however, is increased by the scarce presence of centers of excellence throughout the national territory, where there could also be therapeutic approaches innovative that could reduce the need for cystectomy “. “The lack of homogeneity of the health structures in the different territorial contexts is at the origin of the forced health mobility that sees many patients forced to turn to structures outside their region of residence. These services have important economic repercussions on the health system and a very high out of pocket expense, to be sustained directly by the citizen ”, says Edoardo Fiorini of the Palinuro Association representing patients. For the treatment of superficial tumors, for example, the invasiveness of recurrent diagnostic and therapeutic activities cause inflammatory complications which, in some cases, can lead to a renunciation of therapies. As for the infiltrating tumor, that is, the one that requires the removal of the bladder, the topic of urinary derivation with an external bag or a neobladder reconstructed with a piece of intestine arises in addition to the choice of the traditional surgical approach or with a robot. Then there is the need to “clarify rehabilitation and functional recovery: while the first, in fact, aims to re-establish an injured function and is included in Lea, functional recovery aims at restoring physical conditions such as to allow the recovery of a normal life ”, observes Pier Raffaele Spena of Fais. This “is precisely the goal to be pursued in the case of urothelial tumors in which the patient must regain possession of his own autonomy and existence and be aware that today it is possible to achieve a good quality of life”, adds Valeria Fava of Cittadinanzattiva. more urgent requests highlighted in the Manifesto, there is that of starting a mapping of the Quality Centers as soon as possible with the establishment of a coordinated network and a Patient Register to standardize the quality of care at inter and intra-regional level, in a logic of inter and multidisciplinarity. “Today – observes Paolo Marchetti – patients should be assisted with new organizational models and access to care, as well as new technological resources which, with the support of the NRP, could be made available. Applied technology and digital innovation of healthcare processes – he continues – are a fundamental step to create greater interaction between patient and healthcare facilities, facilitate administrative procedures, reduce differences between territories, manage people safely, thus allowing an expense more efficient and effective “. Among the priorities to be addressed, the Manifesto” highlights the need to codify the centrality of the role and contribution of patient associations in the validation of organizational processes and care pathways, including the monitoring and evaluation of services provided: assistance, devices, follow up, etc. “, remembers Teresa Petrangolini, director of the Patient Advocacy Lab of the High School of Health Economics and Management of Health Systems (Altems) of the Catholic University of Rome. The Manifesto is therefore the starting point for the active involvement of all active subjects: institutions, local health authorities, scientific societies modifications, patient associations, civic organizations.