Cuore Italia – Heart Valve Voice is born: to give a voice to people with heart valve disease

Heart valve diseases affect 1 million Italians. Underestimated, underreported, yet high mortality if left untreated, these diseases are known to only 5% of Italians and only 2 in 100 think they are worth worrying about Rome, September 29, 2016 – For one in two Europeans over 60, the human heart has 2 valves, although one in 100 believe it has none and another 1% believe it has more than 10. The aortic, mitral, tricuspid, and pulmonary valves are known to only 44% of fellow EU citizens. Among the most knowledgeable are Britons and Spaniards who, in 60 percent and 52 percent of cases, respectively, know that the heart, in order to function, has four valves. It is one, perhaps the most curious, of the findings emerging from a survey, conducted by the British research institute Opinion Matters of some 9.000 Europeans over 60 years of age, conducted in 9 major European countries, including Italy, late last year.

The survey, which aims to analyze the population's knowledge and awareness of heart valve disease, a serious but totally underestimated and underreported problem, was illustrated today at the presentation of Cuore Italia – Heart Valve Voice, an association that is a member of the European Heart Valve Voice network of the same name.
"Cuore Italia – Heart Valve Voice wants to give a voice to people with heart valve diseases, to raise awareness of these disorders that, until the surgery former Prime Minister Silvio Berlusconi underwent in June, were completely unknown and ignored by almost the entire population. Perhaps because they affect mainly elderly people, people who are nevertheless still in the midst of activity and whose quality of life is severely compromised. Yet, heart valve diseases can be easily detected, diagnosed and, most importantly, treated," explained Roberto Messina, president of Cuore Italia – Heart Valve Voice.

"The risk of going through heart valve disease increases with age. Aortic stenosis, the most common form in developed countries, affects between 2 percent and 7 percent of those over 65, and over 75 years of age, heart valve disease affects 13 percent of the population," said Niccolò Marchionni, Full Professor of Internal Medicine-Geriatrics at the University of Florence and Director of the Cardiothoracovascular Department AOU Careggi, Florence and member of the Cuore Italia Scientific Committee – Heart Valve Voice.
Impressive size, and one that will become increasingly so. "Eurostat estimates that the current 85 million over-65s in the European Union will double to nearly one-third of the continental population by 2050. So we are talking about millions of people potentially susceptible to heart valve disease," stressed Alessandro Boccanelli, president of the Italian Society of Geriatric Cardiology (SICGe) and member of the Cuore Italia Scientific Committee – Heart Valve Voice. "In Italy, already nearly 1 million people are estimated to be moderately or severely affected by aortic stenosis or mitral insufficiency," he added.

Yet according to the Opinion Matters survey, only 7 out of 100 Europeans know what, for example, aortic stenosis – the narrowing of the valve lumen, mostly caused by calcific deposits on the valve leaflets, is that prevents the proper flow of blood from the heart to the aorta. Italians, with a figure of 5 percent, are below this unflattering average, but the situation is anything but encouraging on the Old Continent: we range from a 13 percent in the Netherlands and Germany, to 0.1 percent (sic!) in Sweden.
"What's worse – commented Gennaro Santoro, interventional cardiologist, also a member of the Cuore Italia Scientific Committee – is the fact that, in addition to not knowing about these diseases and their symptoms, people don't even seem to be particularly interested or concerned about them, despite the fact that the most severe forms can lead to death within 2-3 years."

In fact, with an absolutely coinciding figure between Italy and the EU, only 2 out of 100 people think these are diseases to worry about. Tumors and Alzheimer's disease are the bogeymen, with 28 percent and 26 percent respectively, but Italians and Europeans fear, in order, stroke, heart attack, diabetes, arthritis and respiratory diseases more than heart valve disorders.

To look at the glass half-full, at least our countrymen know who to turn to, in case of symptoms, which are not characteristic, but nevertheless should ring an alarm bell: chest pain, dizziness or palpitations, shortness of breath, tiredness or fatigue. 43% would talk to their cardiologist, 29% to their general practitioner; a possibly more anxious 22% would go to the emergency room, and 5% would want a cardiac consultation directly.

"The first diagnosis is quite simple: just auscultate the heart with a phonendoscope to hear the characteristic 'murmur,' which is usually the first indication of a heart valve disorder. Afterwards, an electrocardiogram and echocardiography will be performed for confirmation," Santoro recalled.

If diagnosed early, heart valve disease can be cured and, with proper care, a good quality of life can be regained. "A damaged heart valve can either be repaired or replaced with cardiac surgery, the technique of which has been gradually improving over the years with the development of minimally invasive procedures, up to the most recent TAVI, an operation to replace the aortic valve without opening the heart, in people considered too high risk for cardiac surgery," explained Pierluigi Stefano, Director Cardiac Surgery, AOU Careggi in Florence, a member of the Cuore Italia Scientific Committee.

The Association Cuore Italia – Heart Valve Voice, based in Rome, was born from the collaboration with Senior Italia Federanziani, to promote the early diagnosis of heart valve diseases and ensure a clear and effective treatment pathway, breaking down the main obstacles for access to therapies: from the lack of knowledge of the disease to the meager funding for innovative research procedures. "We believe that people with heart valve disorders deserve the best care, particularly the elderly. Our goal is to change the treatment of heart valve diseases and help people lead a qualitatively better life. We are reaching out to those who suffer or are at risk of these diseases, their family members and friends, but also to all people who want to join our campaign to raise awareness to improve the treatment of these diseases," concluded Roberto Messina.