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Monday, 12 February, 2001, 09:00 GMT
Haemophiliacs strike protest
Clotting agents are made from human blood
A haemophiliacs are risking their lives by refusing treatment in protest at the government's refusal to fund a safer synthetic blood clotting agent.

Among them is Marc Payton, from Worcestershire, who has refused for the last three weeks to take the clotting agent in use at the moment, Factor VIII, which is derived from human blood.

Although donor blood supplies are screened for infections, and Factor VIII itself is heated and chemically treated to remove contaminants, there are still fears that it is unsafe.

The haemophiliac community has campaigned for several years without success for the government to make a safe synthetic alternative widely available. At present, many health authorities are refusing to fund the treatment.

I feel I have got nothing left to lose anymore

Marc Payton
Mr Payton was infected with HIV and hepatitis C from contaminated blood supplies in the early 1980s. He has also had cancer, which may have developed because of the damage to his immune system.

He says he is so angry that the synthetic agent has not been made widely available that he is prepared to risk bleeding to death.

Refused surgery

He has refused surgery needed to treat a lesion on his tongue, and is suffering from painful swelling as a result of a haemorrhage in his hip.

He told BBC News Online: "I feel I have got nothing left to lose anymore.

"I have had enough of pumping a substance that is basically poisonous into my body."

Mr Payton said the government was reluctant to switch to a synthetic product because it was nearly twice as expensive as Factor VIII.

He said: "Cost should not be an issue. Basically people are dying and going through a lot of mental anguish."

The Department of Health warned last month that some haemophiliacs may have been exposed to blood plasma from a donor found to have been infected with the brain disease vCJD.

Before modern safety techniques were introduced, it was commonplace for haemophiliacs to be infected with deadly diseases such as HIV and hepatitis C from contaminated blood supplies.

Many deaths

The Haemophilia Society estimates that 95% of the people treated during the 1970s and 1980s were infected with the hepatitis C virus. Some 1,200 people were infected with both hepatitis C and HIV, and at least 800 have since died.

The modern screening and cleansing techniques have made infection with hepatitis C and HIV impossible.

However, two other infectious agents, parvo virus B19 and hepatitis A, are still able to infect supplies, while the risk of vCJD is still unknown.

The synthetic alternative carries no such risk as it contains very little organic material.

Karin Pappenheim, chief executive of the Haemophilia Society, said the Haemophilia Specialist Doctors Organisation had recommended as long ago as 1996 that Factor VIII should be replaced by a synthetic alternative.

She told BBC News Online: "The Haemophilia Society does not encourage or condone people not taking their treatment when they have a potentially life-threatening condition.

"But on the other hand we have been pressing the government for so long that we can understand why some people are taking their own very desperate individual action."

A Department of Health spokesman said a meeting had taken place with the Haemophilia Society, and an announcement would be made in due course.

People with haemophilia are unable to make blood clotting proteins naturally. This means that without treatment they risk bleeding to death from even the most minor cut or internal injury.

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30 Jan 01 | Health
Haemophiliacs face vCJD scare
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