ROME (ITALPRESS) – Living with a rare kidney disease means living with a clinical and emotional burden that goes far beyond the medical data. Patients, who are getting younger and younger, despite having access to supportive therapies, often do not have treatments that can change the disease’s evolution, nor can they count on structured and uniform care throughout the country. Among the most relevant forms of rare diseases, IgA nephropathy (IgAN)-also known as Berger’s Disease-affects predominantly young adults, with a course that, in 50 percent of cases, leads to renal failure within 10 to 15 years after diagnosis. The impact is severe: life expectancy is reduced, cardiovascular risks are increased, hospitalizations and complications multiply. And, on the psychological level, it weighs the knowledge that it may lead to dialysis at a young age. According to the most recent KDIGO guidelines, treatments that reduce the formation of pathogenic immune complexes and glomerular inflammation are recommended in patients at risk of progression, with the goal of slowing the loss of renal function-an indication that reinforces the need to ensure timely and reimbursed access to innovative treatments.”It is essential to structure a National Plan, which ensures not only early diagnosis, but also timely access to the most advanced therapies,” said Luca De Nicola, President of the Italian Society of Nephrology. “The progression of IgAN, a disease that predominantly affects young adults, can lead these patients to enter dialysis even at a young age and is rapid and often inexorable: according to recent studies, 50 percent of patients reach renal failure within about 11 years after diagnosis. This results in the need for renal function replacement treatments such as dialysis or transplantation, with a significant impact on quality of life and the National Health Service. Therefore, we expect responsible actions from AIFA and Parliament, so that a concrete response to patients’ needs is given and the existing therapeutic gap is filled by facilitating easier access to treatment. “To date, treatment options for IgAN are limited and access to innovative treatments is compromised by regulatory and reimbursability barriers. “Patients with IgA nephropathy live with the uncertainty of a disease that can progress to dialysis, often already at a young age,” said Massimo Morosetti, president of the Italian Kidney Foundation. “Living with dialysis today,” he added, “means giving up a significant part of one’s autonomy, with a profound impact on social, work and emotional life, even though these therapies are now very well tolerated compared to the past. The psychological consequences, especially in younger patients, are often underestimated. It is imperative to take urgent action to make accessible innovative treatments capable of slowing disease progression and improving patients’ quality of life. The Italian Kidney Foundation will continue to support any action oriented to respond to the real needs of those affected by rare kidney diseases, with a view to equity and personalized care. “The hope shared by the scientific community, patients and those who represent them in Parliament is that Italy will choose to concretely invest in the care of rare kidney diseases, recognizing their complexity and supporting timely access to all available and most advanced therapeutic options.-photo press office Esperia Advocacy -(ITALPRESS).
