1) Professor Magni, could you tell us about this report and what it aims to achieve?
The report introduces the concept of ageism in Structural Heart Disease (SHD), which is a very relevant social aspect associated with these disease that are mostly prevalent in older people.
SHDs are a significant problem for society because they are progressive and can include serious symptoms, such as heart failure, and potentially lead to premature death. Society needs to know about these symptoms, which is why raising awareness features as a key pillar of the report– after all, you can’t diagnose something that you have never heard of!
We also need to raise awareness among young people, as their relatives could be affected by SHD, and ensure they too understand that SHD is progressive – it is not just a question of having, or not having, the disease. Failure to treat the symptoms properly could lead to serious problems, or even death. This is why we need early identification, early diagnosis, and early treatment.
One of my neighbours, who was 70, benefitted from this early diagnosis. He was having periodic treatments every few years when they found a murmur in his heart. I pushed him to go through the diagnostic track to see if something was wrong, and he ended up having a heart valve replacement, something for which he is very thankful.
2) The subtitle of the report is “The invisible epidemic”: Why do we know so little about a group of conditions which affect nearly 14 million people in Europe?
Like most NCDs, SHDs are like an iceberg, with the smaller section being the visible signs and symptoms, and the larger underwater section being the underlying condition. This means it can be a long time before a disease becomes clinically evident, and it can often be confused with just getting older.
When we age, we experience a decline in physical functions, such as playing sport and climbing stairs, but even these minor signs could be significant. We need to take care of older people and see what we can do for them, examine how we can keep them healthy for longing, and ensure they age healthily.
3) What are the barriers to change across Europe, and is Europe doing enough to break down these barriers?
The lack of awareness in the general population can lead to the so-called “invisible epidemic”, and even minor symptoms often go unnoticed and therefore undiagnosed and untreated.
Sometimes even health providers are not very aware about the progressiveness of these diseases over time. SHDs are not static but dynamic and can develop in quite a serious way.
Europe is not doing enough about SHDs, so the most important thing we can do is to speak about them and make them more visible and more understandable, whilst emphasising that they are treatable.
4) How do these barriers impact patients’ access to care?
SHD symptoms are frequently confused with ageing, and this can be a subtle obstacle to access to care if you are not already aware of SHDs.
This confusion can also prevent referrals to specialists who can diagnose the disease, and thereby reduces patients’ access to care.
5) How has the Covid-19 pandemic impacted patient access to SHD treatment?
Covid-19 has been a very subtle barrier. If you have just minor symptoms, you might assume they will go away, especially given the focus on the pandemic and the desire to avoid hospitals.
This resulted in many people repeatedly postponing medical appointments, thereby delaying diagnosis and treatment. It is important to do the right thing at the right time, and although Covid necessitated all the preventive measures to avoid infection, of course, life cannot stop, and we should continue to pay attention to SHD.
6) What are the societal and financial costs of this late diagnosis and treatment of patients?
The first cost is not economic but represents rather the human and psychological cost for the person, relatives, and caregivers.
Since some diseases in late development can be associated with disability, this can subsequently become a major financial cost for society. All these things can and should be prevented.
7) What is the Italian Heart Foundation doing to address this lack of awareness and lift these barriers?
We are very much involved in the process of improving SHD awareness for patients, as well as for the general population and health providers. The Italian Health Foundation is part of the SHD coalition. We are in the steering committee and help provide visibility on this topic on our website and social media channels. We also participate in international meetings to promote and discuss all these aspects.
8) What could be implemented at EU level, and in EU countries, to make sure all 14 million people affected with SHD have access to the right treatment at the right time?
We need a combined approach with general central guidelines at EU level. This is important because general policies should be prepared at this level, but we also need strong local implementation, so we need to ensure policymakers, citizens, and healthcare providers are fully informed and take into consideration this important issue for society and the individual.
So once again, we need to think global and act local.
For more information, you can consult the ILC’s report here.