HEART UK urges NHS in England to improve inherited raised cholesterol testing to prevent early death

HEART UK, the Cholesterol Charity, has today urged health authorities in England to undertake a targeted national programme of testing for Familial Hypercholesterolaemia, a form of inherited raised cholesterol, and prevent thousands of early deaths.
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Feb. 21, 2012 - PRLog -- HEART UK, the Cholesterol Charity, has today urged health authorities in England to undertake a targeted national programme of testing for Familial Hypercholesterolaemia (FH), a form of inherited raised cholesterol, and prevent thousands of early deaths.

The HEART UK FH Report, to be launched at Westminster today 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. AstraZeneca, Genzyme Therapeutics Limited and MSD have provided funding for the development and publication of this report, but final editorial control has remained with HEART UK.

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 £1.4 million per year.

HEART UK recommends a national programme for FH in England under the auspices of the National Commissioning Board or similar, which would ensure that access to FH services is available beyond the limited boundaries of a PCT or Clinical Commissioning Group. A national FH programme for England will not only save lives and families, it will also save money. A UK-wide national patient register and database for FH is also needed to aid better cascade screening across the country.

Dr Dermot Neely, Co-Chair of the HEART UK FH Guideline Implementation Team said: “Proper diagnosis and treatment of FH in England is long overdue and lives are being lost. This is about putting proven medical research into practice. A national programme in England, joined up with a UK-wide register of FH patients, is the only way to ensure that cases are detected and treated wherever people live.”

Dr David Milne, Co-Chair of the HEART UK FH Guideline Implementation Team added: “Primary care clinicians like me want to provide the best care for our patients in the long term and we need the support of specialist services to pick out those families that need advice and
intervention from a young age, rather than just providing care for those in middle age and older. This report highlights the need for better joined up working between primary and secondary care, greater clinical awareness of FH, and proper commitment to finding cases of FH and treating them as needed.”

The NICE Guideline shows that cascade testing, using a combination of cholesterol and DNA tests in affected families, followed by intense lipid lowering therapy, is cost-effective and delivers optimum health outcomes.


HEART UK was formed in 2002 following a merger of The Family Heart Association (FHA) and the British Hyperlipidaemia Association (BHA).

HEART UK - The Cholesterol Charity - promotes healthy hearts and better lives by:
• helping and supporting individuals, families and health professionals to understand and control cholesterol conditions and other heart risks
• promoting education and research to improve identification, prevention, treatment and care of cholesterol and lipid conditions
• working in partnership with government, the NHS, industry and other charities
• promoting best practice in addressing inherited and non-inherited cholesterol conditions

The HEART UK Familial Hypercholesterolaemia Guideline Implementation Team (FHGIT) was formed after the publication of the NICE Guideline on FH in 2008, and aims to help facilitate the implementation of the Guideline’s recommendations.

AstraZeneca, Genzyme Therapeutics Limited and MSD (the sponsors) were asked by HEART UK to provide funding for the commission and production of this report. The sponsors have reviewed the content for compliance purposes only and are not responsible for data verification. The authors have had editorial control of the materials and the content of the material may not necessarily reflect the views of the sponsors.

People wishing to find out more about FH should contact: HEART UK on the helpline - 0845 450 5988 – or visit www.heartuk.org.uk - where the FH Report can be downloaded.
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Calacus PR was established in 2007 by David Alexander, a former national and international sports journalist. Calacus has expertise in international sports campaigns, media relations, consumer and corporate consultancy and athlete representation.
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Tags:Inherited Raised Cholesterol, NHS, NICE guidelines, Health, Cascade Screening
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