News on the latest discoveries and experiments for the treatment and diagnosis of Cardiomyopathies.

The availability of genetic testing for cardiomyopathies in Italy

The results of a survey on the availability of genetic testing at the main Italian medical genetics laboratories of the NHS for patients with cardiomyopathies. Together with AICARM Aps, Dr. Maria Iascone (director of the Medical Genetics Laboratory of the ASTT Papa Giovanni XXIII of Bergamo) and Dr. Francesca Girolami (Cardiogenetics of the Meyer IRCCS University Hospital, of Florence). These are the most important conclusions: in most cases the test is carried out together with genetic counselling, it requires an average of 3-6 months to carry out and is always carried out with NGS technology.

March 21 2024|

What happens when we take a drug: Placebo and Nocebo effects

Whenever a drug is used for the first time in the treatment of diseases, the patient is faced with two possible effects. The "placebo effect", i.e. a perceived or real benefit on the part of the patient who believes he is undergoing an effective treatment for his clinical condition even if the medicine does not contain active properties. It is the "nocebo" effect (from the Latin "nocere", to damage), that is, the disturbing shadow of side effects. The detailed information leaflets of medicines, the so-called "leaflets", list a long list of possible negative health effects. These fears, fueled by negative expectations, can trigger the phenomenon. The tools to overcome the problem are correct information and the relationship of trust between doctor and patient.

March 21 2024|

Mavacamten ready for “compassionate use”, perhaps in a year it will be refundable

Mavacamten and Aficamten are the two new drugs for the treatment of hypertrophic cardiomyopathy. Mavacamten has entered the “compassionate” use phase. This means that the drug is already available and can be supplied by the manufacturer for patients with hypertrophic obstructive cardiomyopathy, upon request by expert cardiologists. Aficamten is a little further behind in the experimentation process.

February 21 2024|

Cardiac arrest: how to improve complication-free survival after cardiopulmonary resuscitation (CPR)

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.

January 29 2024|

Green light for Mavacamten: the compassionate use phase begins

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.

December 16 2023|

Shortage of the drug Nadolol: AICARM requests the intervention of AIFA

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.

December 13 2023|

Life in your hands: the importance of cardiopulmonary resuscitation for families of patients with cardiomyopathy

Cardiac arrest is a reality feared by everyone, however people suffering from a form of cardiomyopathy are at greater risk than the general population. This dramatic event can happen suddenly, but thanks to Cardiopulmonary Resuscitation (CPR) and the use of the defibrillator, we can save lives and reduce the consequences of a lack of oxygenation to the brain and other vital organs.

November 13, 2023|

NADOLOL, import of the drug and galenic preparation

According to AIFA, Nadolol will return to the market next March 2024. In the meantime, patients who use Nadolol can purchase it abroad or use the galenic preparation prepared by an Italian pharmacy that has the active ingredient and a laboratory equipped for these preparations. The first useful addresses of pharmacies contacted by our volunteers in the cities of Milan and Florence are given.

November 12, 2023|
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