2023-10-03 13:25:13
Patient associations, scientific societies and institutions can collaborate to improve the quality of life of patients with alopecia areata and at the same time guarantee a sustainable future for the National Health Service, ensuring universality, equality and equity in the treatment of pathologies, without neglecting any patient and providing appropriate support and assistance. With this objective, clinicians and representatives of institutions were involved by patients in the National Alopecia Areata Day, which is celebrated today, 3 October, in an event to discuss and increase awareness, understanding and standards of care for this autoimmune disease that manifests itself particularly on the skin, but which has important implications on the quality of life.
At the press conference organized this morning, in Rome, by the Italian Association of Alopecia Patients and Friends (Aipaf), the National Alopecia Areata Association (Anaa) and the National Mediterranean Alopecia Areata Association (Anmaa), in collaboration with Fb&Associati, were in fact representatives of the scientific societies – Association of Italian hospital dermatologists, venereologists and public health (Adoi) and Italian Society of dermatology and sexually transmitted diseases (Sidemast) – and of the institutions were present.
“Our association – states Claudia Cassia, president of Aipaf – is committed daily to providing emotional support and essential information to those living with this condition. The support of institutions is essential to increase awareness of the disease and promote research and access to therapies. Moments like this are of fundamental importance to make our pathology more and more known.” In this regard, adds Tina Cappiello, president of Anmaa: “I firmly believe that institutional recognition is an important step to ensure that the voices and needs of people affected by alopecia areata are heard and taken into consideration. Collaborating with institutions can help to promote awareness and access to adequate treatments”. Enrico Rizza, coordinator of Anaa’s scientific medical committee, also underlines the “fundamental” importance of “collaboration between medical professionals, researchers and patient organizations” to give voice to the needs and challenges faced by those living with this condition. Together – he continues – we can significantly contribute to improving the lives and well-being of those who fight alopecia areata, guaranteeing access to high-quality treatments and promoting research and public awareness”.
Alopecia areata is an autoimmune, multifactorial, genetically based pathology with a chronic-relapsing pattern that affects males and females equally with two peaks of incidence in pediatric age and young adults, between 20 and 40 years of age. It is estimated that 2% of the population suffers from it, 145 million people in the world, just over 117,900 people in Italy. Despite its clinical benignity, the disease can have a devastating impact on the quality of life of patients and their relatives, especially in those cases where the disease affects children, adolescents and women. “These collaborations – observes Alfredo Rossi, associate professor at La Sapienza University and Dermatology Clinic, Umberto I Polyclinic in Rome – facilitate the sharing of knowledge and access to resources necessary to improve the diagnosis and treatment of the pathology. The involvement of the institutions is an essential step towards better patient care.”
Representing the institutions, Senator Ignazio Zullo, member of the 10th Permanent Commission on Social Affairs, Health, Public and Private Work, Social Security, underlined the “essential importance of guaranteeing adequate institutional recognition and working to raise public awareness and promote support for people with alopecia areata through legislative and funding initiatives. Fratelli d’Italia MP Concetta Zurzolo reiterated the need to “collaborate with scientific societies and associations to address this challenge in a complete and effective way. We must work at an institutional level – she adds – to promote research, early diagnosis and access to adequate therapies, so as to improve the lives of those who experience the pathology on a daily basis.”
On the sidelines of the event, Ilenia Malavasi, member of the XII Social Affairs Commission of the Chamber of Deputies, commented that the dialogue between institutions, clinicians and patients “specifically translates into better support for them and their families, who are still forced to face significant direct (health or socio-health) and indirect costs that concern exposure on the work, social, emotional and, in the case of children, scholastic fronts. The priority objective – he reiterates – is to work together to identify projects, paths and amendatory processes and regulations on which to intervene effectively”.
What was previously considered just a condition is now treated as a real autoimmune disease and treated with recently approved systemic drugs, such as Jak inhibitors. “Scientific society like ours – recalls Giuseppe Argenziano, Sidemast president – plays a key role in ensuring that the voices of people affected by alopecia areata are heard and that their needs are taken care of. By collaborating together, we can highlight the “importance of research, early diagnosis and appropriate therapies to improve the quality of life of those living with this pathology.”
As Francesco Cusano, president of Adoi, reiterates, “this pathology has a significant impact on the mental health and psychological well-being of those affected. As a scientific society, we are committed to providing the support and guidance needed to best understand and manage this disease. Institutional recognition is a crucial step in the right direction to ensure that no one feels alone – he concludes – in their fight against alopecia areata”.
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