Croí is a member of a European Alliance of heart patient organisations who have come together to raise awareness of heart valve disease. On Tuesday September 4th 2018, Mairead McGuinness MEP will host a round table discussion on heart valve disease in the European Parliament, Brussels to mark the launch of a European White Paper on Heart Valve Disease in advance of the first European Heart Valve Disease Awareness Day on September 8th.
The aim of the event is to officially launch the White Paper, gather formal endorsement from policy makers, generate discussion amongst stakeholders and policy makers and seek to raise awareness of heart valve disease so that it would be included in European Health Policy.
Key messages from White Paper:
- Heart Valve Disease (HVD) is predominantly a disease of ageing (affecting up to 13% of people over the age of 75) which if left undetected or if treatment is delayed, becomes a serious impediment to healthy and active aging.
- Heart valve disease is a serious disease – with those affected experiencing symptoms such as: breathlessness, chest pains, fainting and, in worst cases, sudden death. Because of low levels of awareness, many people mistake their symptoms as normal signs of ageing and therefore do not seek help.
- The good news is that modern treatment for heart valve disease is effectively curative. Once patients receive the effective valve repair or replacement they can return to a good quality of life and a normal life expectancy
- As patient groups, we believe that heart valve disease is a significant barrier to active and healthy ageing. With early detection and appropriate treatment, our senior members of society can continue to make a really positive contribution to our economies, our communities and our families.
- Collectively we feel the need to address the often negative perceptions of ageing. The challenges presented by our global ageing population are too often portrayed as a negative trend. The reality is that we are living longer…. and longevity, especially with good health is to be celebrated. The global pattern of aging shows that that by 2015, over 2 billion of the world’s population will be over the age of 60. Healthy ageing is a positive…. and Aging populations can be drivers of productivity and wealth creation by remaining active, engaged, and working. This is what we call the Power of Positive Ageing.
Today, we have 4 Calls to Action on HVD to enable the Power of Positive Ageing. They are what we call The Four A’s
We need to raise public and HCP awareness of the importance of early detection, early diagnosis and early treatment. The clock starts ticking from the moment someone’s symptoms become severe because without treatment the chance of survival beyond 2 years is about 50%
We need patients to be aware of their symptoms and to ask their GP or Primary Care Physician to check their hearts with a Stethoscope. This is often the first step to detection of the disease – a simple Stethoscope Examination. In countries where Stethoscope Checks are routine, the detection of HVD is higher. So we need national governments to fund screening for HVD with an annual health check and Stethoscope Exam for everyone over 65 year of age
We need to ensure that the right action is taken for every patient. By this we are calling for national guidelines on HVD to be part of national cardiovascular disease strategies so that there are clear and standardized pathways from diagnosis to treatment.
Speed is of utmost importance in moving from symptoms to detection to diagnosis to treatment. However, we know that in many European countries the pathway is blocked or delayed and these delays can be life-threatening. Some examples of delays……Often, patients assume their symptoms are normal signs of ageing; low levels of Stethoscope examination in some countries mean detection is delayed; Poor or delayed access to echo-cardiograms (diagnostic test) result in delayed diagnosis. Varying access to specialists coupled with lack of clarity or disagreement on assessment of severity all contribute to unnecessary delays in treatment.
There is huge variation across Europe in terms of access to heart valve disease treatment therapies. Key issues include, no uniform policy across Europe on treatment; people are therefore denied the opportunity to age positively and actively because current treatments for heart valve disease are largely curative.
Often heart valve disease patients are diagnosed only because they see a health care professional for a regular check-up or for some other issue.
The seriousness of heart valve disease, combined with the fact that the symptoms are often difficult to detect or dismissed as a normal part of ageing, means that this lack of awareness can have troublesome or dangerous consequences.
For more information about heart valve disease visit the website of Heart Valve Voice.