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Health service must cough up for drugs

PUBLISHED: 01:10 27 March 2002 | UPDATED: 11:36 03 March 2010

DRUGS for one patient are going to cost the cash-strapped Suffolk health service more than £160,000 a year, the Evening Star can reveal.

The new drugs used to treat the rare Anderson Fabry's Disease, which affects only about 200 men in the country, have been trialled and were due to be licensed last month so drug companies are now withdrawing their support.

DRUGS for one patient are going to cost the cash-strapped Suffolk health service more than £160,000 a year, the Evening Star can reveal.

The new drugs used to treat the rare Anderson Fabry's Disease, which affects only about 200 men in the country, have been trialled and were due to be licensed last month so drug companies are now withdrawing their support.

But for one man in Suffolk, whose identity remains confidential, the treatment must continue to save his life.

Suffolk Health's director or corporate services Jane Rutherford and Mark Millar, director of finance and commissioning, will tell board members at their meeting tomorrow that the health authority has been approached to pick up the bill.

Their report states: "We have been approached to pick up the annual drug costs for one patient, at a cost of £162,000. There appears to be no option but to support this funding request.

"Without treatment the condition proves fatal in middle age. Evidence suggests that with treatment, deterioration can be halted and even reversed."

But the cost will have to be met from a tight budget, as Primary Care Trusts take over spending responsibility from Suffolk Health which ends on Sunday.

Suffolk health's chairwoman Joanna Spicer has said she wished the authority enjoyed a better financial position as its time ran out. Overspending – mostly due to prescribing – is set to reach £4.626 million at the end of March.

The troubled cash situation will continue after the changeover.

The 2002/03 budget of £515,197 million will be split between the five new primary care trusts – Ipswich, Central Suffolk, Suffolk West, Suffolk Coastal and Waveney. There have been protests that the financial year is starting out with less money than is needed to do the job.

Factfile:

Anderson Fabry's Disease:

It is a rare, inheritable, progressive, life-shortening metabolic disease.

Metabolic diseases occur where there is a metabolic block because a catalyst or enzyme, necessary to perform essential chemical reactions in the body, is absent or malfunctioning. In this case, -galactosidase deficiency.

This defect results in the build up of ceramide (a fatty substance) in the tissues and organs.

Characteristic features include inability to sweat and shooting pains in the arms and legs, which develop in childhood. There may also be unexplained episodes of raised temperature.

Diagnosis is rarely made before the late teens when a characteristic purplish rash appears on the bottom or around the genital area.

Later complications of the condition are strokes, heart disease, gut disturbance and renal failure.

The condition presents with attacks and remissions. Dementia associated with brain blood flow may occur.

Some women who carry the condition may suffer from pains, but other complications in women are rare.

Weblinks: www.bdid.com/fabry.htm

www.cafamily.org.uk


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