Adnkronos Rome, November 17 (Adnkronos Salute) – It's not just an informational document, but a working tool for those who choose to contribute to change. The White Paper 'Life Stories with Egpa' is an opportunity for patients to voice their experiences and concerns; for clinicians, it's an invitation to collaborate and strengthen dialogue; for institutions, it's a true operational agenda.
Through a careful reconstruction of the patient's journey, this book gives a voice to those living with this rare disease and their families, integrating the clinical and healthcare perspectives. A statement states that the book highlights the urgent need to ensure that people with EGPA (eosinophilic granulomatosis with polyangiitis) receive a multidisciplinary approach, harmonized treatment pathways, and legal and healthcare protections commensurate with the complexity of the disease.
"This White Paper represents our collective voice, not only to describe the disease, but to forcefully demand concrete changes," says Francesca R. Torracca, president of APACS-Church Strauss Syndrome Patients Association, formerly known as IGPA, the association that produced the White Paper, sponsored by GSK. "We can no longer allow the EPA to be ignored," she adds. "We need a system that recognizes the dignity of our stories. And for this, we must work together with clinicians and institutions, continuing the path outlined in the pages of the Book." One of the main critical issues that emerged from the publication is the severe diagnostic delay, with initial symptoms—late-onset asthma, nasal polyps, chronic rhinosinusitis—often ignored or mistaken for common allergies. "EGPA is often recognized too late, when the damage has already been done. Early diagnosis is possible, but shared knowledge, training, and PDTA are needed. This White Paper could mark a turning point," observes Augusto Vaglio, associate professor of Nephrology and director of the Nephrology Specialization School at the University of Florence, corporate coordinator of Rare Diseases, and medical director of the Nephrology Unit at the Meyer University Hospital, Florence.
The pages of "Life Stories with EGPA"—the release states—have been contributed not only by patients and their caregivers, but also by clinicians and institutional representatives, underscoring the importance of a concrete alliance to improve patient management. The project has also received the patronage of eight scientific societies (Aaiito, Aicna, Iar, Siaaic, Simi, SioeChCF, Sip-Irs, Sir) and the scientific contribution of the European EGPA Study Group. The book also includes contributions from Members of Parliament (MPs) Luciano Ciocchetti, Vice President of the XII Social Affairs Commission of the Chamber of Deputies; Simona Loizzo, Group Leader of the XII Social Affairs Commission of the Chamber of Deputies; Ilenia Malavasi, Member of the XII Social Affairs Commission of the Chamber of Deputies; and Lisa Noja, Councilor of the Lombardy Region and President of the Rare Diseases Intergroup.
The document clearly highlights regional disparities in clinical management, with a near-total absence of formalized pathways (PDTAs), although some best practices point the way forward. "Lombardy has demonstrated that building a PDTA for EGPA is possible. But it's not enough," Noja emphasizes. "We must create a fair national system, in which all patients, from North to South, can receive the same quality of care." The lack of national criteria for referral centers and the need for multidisciplinary care, coordinated by Hub & Spoke centers, also emerge. "We need an integrated care model, based on collaboration between different specialties. Diseases don't stop at a single organ, and medicine cannot afford to limit itself to disciplinary boundaries," emphasizes Giacomo Emmi, full professor of Internal Medicine at the University of Trieste and director of the Clinical Medicine and Rheumatology Complex Unit at Cattinara University Hospital, Trieste.
Furthermore, the lack of a specific civil disability code is a burden, making it difficult to access rights, benefits, and support. The profound psychosocial impact on patients and caregivers, who are often left alone, is underestimated. "I strongly believe in the institutions' duty to listen and act. The EGPA White Paper provides us with clear guidance: now we must implement it, starting with the disability code and uniform treatment pathways," emphasizes the Honorable Ciocchetti.
The association, Apacs, was founded spontaneously to counteract the feelings of loneliness experienced by EGPA patients, often trapped in a little-known condition with few points of reference. Made up exclusively of EGPA patients (and caregivers), it is a vibrant and active community where patients can connect, support one another, and pursue concrete advocacy projects, such as the one that led to the White Paper and the proposals for healthcare and policy action it contains. "Therapeutic innovation," concludes Valentina Angelini, Patient Affairs Director at GSK, "has improved the outlook for patients with EGPA, but for it to be effective, it must be accompanied by a structured and inclusive care network. This White Paper helps us build it together. It is a concrete example of collaboration with patient associations, clinicians, and institutions, putting people living with EGPA at the center with the aim of improving their quality of life. It demonstrates the value of co-creation, which is essential for fully understanding real needs and transforming them into more equitable and effective pathways for those living with this rare disease." You can read and download the White Paper 'Life Stories with EGPA' on the APACS website.