ROME (ITALPRESS) – Epilepsy is one of the most widespread and complex neurological diseases globally, with more than 50 million people affected worldwide and about 600,000 of them in Italy alone. Its multidimensional nature makes it a challenge that goes far beyond the clinical setting: People with Epilepsy face daily difficulties that affect the social, economic and organizational spheres of the National Health Service with a consequent negative impact on their quality of life and opportunities for inclusion. Against this backdrop, the “Epilepsy White Paper: analysis of burden, pathways and accessibility to care” has taken shape, offering an updated and in-depth analysis of care for People with Epilepsy, outlining the treatment and care opportunities currently available and highlighting areas in need of improvement interventions. The paper was produced by Cencora Pharmalex in conjunction with the Italian League Against Epilepsy (LICE) and the LICE Foundation, thanks to an unrestricted contribution from Angelini Pharma.
Epilepsy is a condition that can occur at any age, with two most significant peaks in incidence in childhood and after age 65. In about one-third of cases it presents in a drug-resistant form, meaning that it cannot be adequately controlled with currently available treatments, necessitating structured, ongoing and personalized management.
“Epilepsy is a more or less complex pathology, which expresses itself in various ways and which, beyond the seizures controlled or not by therapy, deeply impacts the lives of people and their caregivers. In Italy, it affects about 1% of the population, with greater peaks of incidence in the first years of life and in ‘old age, representing by prevalence the third form of chronic neurological disease. When Epilepsy manifests as drug-resistant, it requires a multidisciplinary approach that ensures integrated and easily accessible care throughout the country,” says Oriano Mecarelli, President of the LICE ETS Epilepsy Foundation.
The most significant insights from the paper were discussed today in Rome in the presence of institutional representatives, healthcare experts and stakeholders from the pharmaceutical world. The analysis revealed how indirect costs significantly affect the total health care expenditure related to the treatment pathway for Epilepsy, underscoring the importance of an assessment that considers not only clinical outcomes but also the economic and social factors related to the management of cognitive, affective, emotional aspects and, in general, related to the quality of life of People with Epilepsy and their caregivers.
Giovanni Assenza, LICE Referent for Lazio and Abruzzo Region, neurologist at La Fondazione Campus Bio-Medico in Rome, says, “A need that to date People with Epilepsy still experience as unmet concerns the psychosocial sphere. The scientific literature shows us that psychological support improves the quality of life of People with Epilepsy and their caregivers to an extent at least equal to the control of the seizures themselves. The stigma of epilepsy is still present nowadays and weighs heavily on the chances of full social inclusion of People with Epilepsy. We strongly believe that the most powerful means of dealing with these issues is education and information, both of the medical class to ensure the best care, and of the structures of the surrounding world: we are talking about families, schools, the world of work, sports clubs and the political class.”
In this context, the white paper and discussion tables allowed for a reconnaissance of the status quo in different regional contexts, and a unanimous consensus emerged on how the PDTA Epilepsy represents a crucial tool for improving the organization of care pathways and collaboration among stakeholders in different local realities, while enabling a response to targeted requests for support for specific resources and technologies and uniformity of care pathways throughout the country.
“Ensuring equitable access to care for People with Epilepsy is a crucial challenge, considering the significant regional unevenness in the delivery of health services. This study highlights current critical issues and proposes concrete solutions to improve care, reduce territorial disparities, and promote more effective and homogeneous caregiving,” stresses Carlo Andrea Galimberti, LICE president and neurologist at IRCCS Fondazione Mondino in Pavia. – The White Paper is an excellent starting point to show a picture that lends itself to different levels of reading, local and national, health as well as institutional, for a broader and more articulated vision of the issue. Our goal is to build on it and hope that the next version of the document will frame an evolving reality compared to the past.”
Domenico Lucatelli, Market Access & Value Head of Angelini Pharma, said in his closing remarks, “The creation of the white paper represents a fundamental step in charting the path needed to fill the gaps in the care of Epilepsy. We supported the creation of this document because, in order to move toward the future, it is essential to understand what the key needs of people with epilepsy are. We hope that this white paper can be a guiding tool to promote real improvement in care pathways so that every patient can access the most appropriate care.”
The “Epilepsy White Paper: burden analysis, pathways and accessibility to care” can be found at the following link: www.lice.it/pdf/LIBRO-BIANCO-EPILESSIA_2024_12_VF.pdf
– Pharmalex press office photo –
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