Focus: Campaign of the week - Charity lobbies over drug treatment

Indira Das-Gupta,

The International Myeloma Foundation is launching its biggest drive yet to persuade the National Institute for Health and Clinical Excellence (Nice) to approve the drug Velcade for NHS use. It is part of the charity's Access Denied campaign, which was launched two years ago to lobby for access to the best possible treatment for all patients with myeloma, a cancer of the bone marrow, regardless of their background or postcode.

After Nice's preliminary ruling on Velcade stated the drug should not be supplied to patients on the NHS except in clinical trials, the foundation called on its supporters to object by the 14 August deadline. It has sent an email bulletin to supporters urging them to approach their local media with their experiences. About 24 people have responded to the email and several have sent letters to the regional and national press.

The charity has also appealed to the 700 doctors on its database to submit their own evidence to Nice and is asking members of the public to write to their MPs. "Velcade has been approved by Scotland, Wales and most European countries," said Sarah Smith, communications manager at the foundation.

"Nice has not questioned whether it's clinically effective - there's clear evidence that it is.

"Its main objection is cost, but this is because its calculations are based on every patient needing eight cycles of treatment at a cost of £3,000 each time. We hope to clarify this by proposing a 'stopping rule' - a treatment would be ended if a patient did not respond after the first few cycles."

The charity will now maintain pressure on Nice until it makes its final ruling in September. Smith said: "We're not saying that Velcade would work for everyone, but it would give patients more options and provide an alternative to those for whom chemotherapy is not appropriate."

Myeloma remains incurable. It affects about 20,000 people in the UK and the life expectancy of a newly diagnosed myeloma patient is between three and five years. Treatment is aimed at halting the progress of disease and maintaining the patient's quality of life.

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