The Heart UK FH report, to be launched at Westminster with Virendra Sharma MP, shows how a national programme in England would also save the NHS money by preventing the need to treat patients for chronic heart disease.
Familial Hypercholesterolaemia (FH) is a relatively common genetic condition, affecting one in 500 people and when undiagnosed and untreated, sufferers have a much higher premature death rate from cardiovascular disease than the general population. If untreated, around 50% of men and 30% of women with FH will have developed coronary heart disease by the age of 55.
Of the estimated 120,000 people in the UK with FH, only some 15-20% have been formally diagnosed, despite the fact that, unlike many genetic conditions, FH can be diagnosed and treated relatively simply, allowing sufferers to lead normal healthy lives.
Heart UK chief executive, Jules Payne, said: “It is shocking that English health authorities are not taking FH testing as seriously as they could, particularly when a national programme would save lives and save money.
“These are such simple steps and we are disappointed that the Nice guidelines have still not been implemented. There is no excuse for the NHS in England not to have made better progress. With effective, affordable means of diagnosing and treating FH readily available, this cycle of early deaths must be stopped.”
Nice published its guideline for the treatment of FH in 2008, which advocates diagnosing FH through ‘cascade screening’ – a process of blood cholesterol and genetic testing in individuals and their families with especially high cholesterol and a history of premature heart disease.
While FH initiatives have been established to address the condition in Scotland, Wales and Northern Ireland, there remains no national FH programme in England with some 80-85% of the FH population still undiagnosed. Heart UK expected more would be done to diagnose and treat people with the condition.
The Heart UK FH Report establishes that if 50% of patients with FH are diagnosed and treated, the NHS could save £1.7m per year on health treatment otherwise required for heart disease, while not implementing cascade screening is costing the NHS £1.4m per year.
Source: Heart UK
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