For a patient suffering from a genetic heart disease, the decision to implant a defibrillator is not an easy one. There are many pros and cons, a lot of information to take into consideration and, although the advice of your doctor is fundamental, the final choice can only be up to the patient.
The year that has just begun immediately proposed us some fundamental objectives to be at the service of our community of patients and doctors, addressing the most urgent problems on which to bring all the pressure and conviction of the Association to bear. In this newsletter we continue our offer of thematic information sheets by proposing the article by Emil Tsenov, an entrepreneur marketing consultant, who examines all the aspects inherent to the choice to implant a defibrillator. The author is involved in various initiatives in favor of patients.
Reflections on a study appearing in the Journal of the American College of Cardiology which reports the evolution of the incidence, management and prognosis of AC in athletes in France. The complication-free survival rate tripled. In Italy it is necessary to extend CPR training programs and increase the installation of AEDs, also involving middle and high school students and installing AEDs in all workplaces as well as in sports.
To help people diagnosed with cardiomyopathy, AICARM has activated a listening desk managed by volunteers and experts: Cuori in Ascolto. AICARM has trained a group of volunteers who, in addition to being carriers of a cardiomyopathy themselves, have acquired basic knowledge on the diagnosis, the different therapies and the pathogenesis of cardiomyopathies. I am able to actively listen to the patient or a family member and establish an empathetic relationship, creating contact between two people who share similar problems.
Mavacamten is the first approved drug of a new class of drugs, which reduce the activity of "cardiac myosin", a protein fundamental for the contraction of heart cells, which plays a decisive role in creating obstruction to the outflow of blood left ventricle in most patients with hypertrophic obstructive cardiomyopathy. A few weeks ago, the activation of the Compassionate Use Program was officially published on the AIFA website.
2023 was a crucial year for our Association, which took on the legal personality of APS (Social Promotion Association). After four years of commitment on the part of everyone, volunteers, members, specialists, we have acquired the awareness of being an important and recognized reality and therefore an entity that can make its voice heard at any level, medical, scientific and political, national and international.
2024 will see AICARM still committed to disseminating knowledge on cardiomyopathies, we will organize other courses for expert patients during the year. However, we have seen that there is a growing demand for knowledge about cardiomyopathies. And providing answers with in-person courses is not enough to cover patients' requests and, for this reason, next year AICARM will combine the in-person courses with other training activities carried out online.
The shortage of Nadolol in pharmacies is increasingly worrying doctors and patients and for this reason AICARM APS has decided to contact the director of the Italian Medicines Agency Domenico Di Giorgio to request urgent intervention. In a letter sent on 4 December 2023, President Franco Cecchi, together with the pharmacologist Alessandro Mugelli, asked AIFA to take action to ensure the availability of Nadolol in pharmacies (including by importing it from abroad) and to request its production from the Institute Military Pharmaceutical of Florence.
Aicarm's autumn activity is very intense, with the third edition of the course for expert patients and cardiopulmonary resuscitation scheduled for November 25th. Furthermore, our action focuses on information updating, such as the search for alternatives to make up for the shortage of Nadolol, and thanks supporters and institutions for their support and participation in the presentation of the book "Il Cuore Grande" at Villa Bardini, Florence. Exceptional godmother was the actress Pamela Villoresi who read some touching stories from the book with great talent.
The objective was the presentation of the volume Il Cuore Grande to the representatives of the institutions, sponsors and supporters of Aicarm. But the event was transformed into a great celebration for the four years of life and activity of the Association in the setting of Villa Bardini, the exceptional terrace on the hill recovered for the use of Florentines and visitors and restored thanks to the CR Firenze Foundation which manages the spaces through the Bardini and Peyron Monumental Parks Foundation.