The Velcade Three
Fury as two of Velcade Three miss out on drug
Three women who have campaigned tirelessly for access to a life-extending drug have been left angry and disappointed by a decision which will mean only one of them will be entitled to it on the NHS.
The National Institute for Health and Clinical Excellence (Nice) today ruled Velcade will only be given on the NHS to multiple myeloma patients when they relapse for the first time.
The decision splits the Velcade Three and means two of them will not be entitled to the drug on the NHS.
Janice Wrigglesworth, of Cowling, and Bradford midwife Jacky Pickles and Marie Morton, both of Keighley, all have multiple myeloma - bone marrow cancer - and have fought together for access to Velcade.
The final ruling means only Janice will be entitled to the drug on the NHS. It is a decision which has left her confused and angry.
"I am pleased but at the same time I feel disappointed and angry," she said.
"I know that it is good news but I am just so worried about the other patients."
The final draft guidance incorporates a risk-sharing scheme which means patients showing a full or partial response to Velcade will remain on it with their treatment funded by the NHS.
Patients who show no or minimal response will be taken off the drug and the costs refunded by the drug's manufacturer.
The Velcade Three issued a joint statement saying: "There are mixed feelings today among the Velcade Three. For Janice Wrigglesworth and any patients who have recently been diagnosed with multiple myeloma or those who haven't yet relapsed there is joy and relief. These patients will at least be able to be treated with Velcade on the NHS following the money-back guarantee offered by the manufacturer.
"For Marie Morton and those patients on their second or third relapse this decision is quite simply too little, too late.
"Under this guidance they will not be eligible for treatment with Velcade. For Jacky Pickles and those few patients in the UK who have been lucky enough to receive a course of Velcade already there is uncertainty and fear.
"Despite the fact they are living proof of the effectiveness of Velcade they will have to fight to get further treatment as and when they need it.
"On what should have been a day of celebration after two years of campaigning for access to Velcade on the NHS we are instead angry and disappointed that Nice has once again moved the goal posts.
"In the appraisal consultation document released in June, Nice indicated that Velcade would be available to all patients after relapse meaning that no-one would die of myeloma without having access to this treatment.
"But once again they have changed their minds, so while this decision will help a lot of myeloma patients there are some of us who are devastated because Nice gave us hope and they have taken it away again.
"Nice had nothing to lose by approving it for all patients at first relapse and beyond. The manufacturer had offered a money-back guarantee. If it did not work the NHS would not pay. Why should you not be able to have the treatment again if it worked the first time?"
Derryn Borley, head of cancer support services at Cancerbackup, said the charity was very disappointed with the decision. "Denying patients access to this treatment at subsequent relapses will be hard for patients and their families as the treatment can give valuable more months to people living with this incurable cancer," he said.
Eric Low, of the charity Myeloma UK, said the change to the guidance at this late stage was very disappointing. "We are very concerned about the implications of this decision for patients for whom there are very limited or no other treatment options available," he said.
Tony Gavin, of Leukaemia CARE, said the decision would not benefit the patients who really need it. "The entire appraisal process has been an ordeal for patients and it is a great shame that many will still lose out," he said.
Copyright © The Velcade Three, 2010.