Adnkronos Rome, November 17 (Adnkronos Salute) – "It was born from listening to the voices of patients, collected thanks to the contribution of the Churg Strauss Syndrome Patients Association (APACS) Aps, which conveyed with great authenticity and emotional strength the stories, needs, and daily difficulties of patients, their families, and caregivers." This is how Valentina Angelini, Patient Affairs Director at GSK, explained the origin of the White Paper 'Life Stories with EGPA' dedicated to Eosinophilic Granulomatosis with Polyangiitis, which "is not simply a project, but a concrete commitment, a support for people living with this rare, multisystem, and complex disease."
Alongside patients, the text also includes "the voice of doctors who work every day," Angelini continues, "to reduce diagnosis times and make the best possible treatments accessible; treatments capable not only of treating the disease, but also of alleviating symptoms and improving quality of life. Finally, the White Paper also addresses institutions and associations: its goal is to stimulate concrete actions to better recognize EGPA and to ensure that diagnoses and treatments are available more quickly for all patients."
The testimonies collected in the White Paper, Angelini emphasizes, "show us in a very concrete way what it means to live with EGPA: the often long, arduous journey, involving constant travel to find a referral center, to obtain a correct diagnosis, to access treatment." The unanimous text "clearly highlights the diagnostic difficulty and the profound disparity" of referrals "across the country. There are centers where the condition is recognized and managed," he points out, "but there are also people living in more disadvantaged areas who don't have this option and are forced to make veritable 'medical pilgrimages' in search of an answer. This shouldn't happen," he states. "All patients have the right to the same opportunity for timely diagnosis and appropriate treatment, wherever they live."
The White Paper also conveys a strong "message of hope" because, thanks to the work of the APACS patient association, "a sense of community, unity," support, and trust is being created. According to Angelini, "drugs without patients, without their input into study design and their perspective, would not be enough. This should be the direction we are moving toward: a healthcare system in which patients are not just beneficiaries" of a series of services, "but participants in the development of drugs and the creation of solutions that address the needs of those with a disease. Patients must become increasingly aware of what they have available and how important their voice is and how it must be heard," he concludes, "by patient associations, pharmaceutical companies, and institutions."