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Clutching a priceless lifeline: David Rodgers and his partner Petra Dando |
PATIENT WINS BATTLE FOR WONDER DRUG
Companies are ‘trading in life and death’ over pill prices
A BLOOD cancer patient who spent eight months fighting for the right to be given a “wonder drug” has urged drug firms to slash their eye-watering prices.
Companies in control of breakthrough treatments were warned they are “trading in life and death” and there was no time to haggle with the government over fees.
David Rodgers, 60, from Tufnell Park, said he had been given new hope in his battle with myeloma – an aggressive form of blood cancer – after becoming one of the few patients to win an appeal to health authorities to get funding for Revlimid, a £4,500-a-month course of tablets.
The drug, yet to approved for widespread NHS use, has had dramatic effects in tackling a condition which doctors have historically struggled to treat and which is often deadly within five years of diagnosis.
But Mr Rodgers warned other patients faced a tough time convincing the government to pay for their treatments while prices remained so high and with Primary Care Trusts reluctant to commit to spending. Applications are still judged on a case by case basis.
Mr Rodgers, a well-known tenants’ campaigner who has been battling the debilitating disease for five years, said: “All patients should get the chance to have the drugs they need – but the decisions are being made on cost-effectiveness.”
Full story:
THE small blister pack looks like any other medicine cabinet painkiller. Nobody would think a row of five or six Revlimid tablets could be worth around £1,000.
And nobody, from their appearance alone, could understand how priceless these small white pills are to David Rodgers, or realise the rollercoaster battle he has faced to get them.
Mr Rodgers, 60, began a six-month course last week after spending the last eight months convincing health chiefs he needed the “wonder drug”.
It treats his myeloma, a rare but relentlessly aggressive form of blood cancer which chews away at nerve endings and is often deadly.
Authorities initially refused to pay for the drug, changing their minds only last month after his appeal.
The turnaround came just as the National Institute for Health and Clinical Excellence (NICE) – the body which decides which drugs should be made readily available on the NHS – made a preliminary decision not to fund wider use.
Mr Rodgers, who lives on the Camden and Islington borders in Tufnell Park, now fears other patients will face a battle to get Revlimid.
“The decisions NICE make are not on clinical effectiveness,” he said. “The decisions are about cost effectiveness and that’s wrong.
“People should get the drugs they need.”
The sticking point behind the advances that Revlimid – a trade name for a drug called lenalidomide – appears to offer is its cost.
The £4,500 price-tag for about a month’s worth of treatment got NICE spluttering and number crunchers are unlikely to budge until drug companies lower prices.
Professor Peter Littlejohns, the clinical and public health director at Nice, said: “Nice has to decide what treatments represent best value for the NHS.”
While the hard talking goes on, so does the wait for patients – and who wants to talk about money, when you’ve been told that you might not live beyond two or three years?
Mr Rodgers, who is known locally as a housing campaigner, proved Revlimid had a positive effect after participating in a trial of the drug run by the Royal Free Hospital in Hampstead.
Where other treatments had failed – one even sent him into a coma – Revlimid clearly cut the cancerous cells in his blood. But when the tests ended, his fight to get funding for further courses began.
“The wait to find out to see if you have been approved affects your state of mind and adds to the stress,” he said.
Holborn and St Pancras MP Frank Dobson helped Mr Rodgers’ campaign with a letter of recommendation to health chiefs, and he is full of thanks to his partner, Petra Dando, who in her angriest moments had visions of storming health authority buildings.
Mr Rodgers said: “Without these drugs, the diagnosis is an early death. With them, you start to think you can live longer. I have to thank the PCT.
“I don’t know why the drug companies do what they do, whether they develop drugs for humanitarian reasons or to make money, but they have to be pressured to bring the costs down.
“We can’t get to a situation where the drug companies know the drugs are so important to people that they feel they can charge what they like. They are trading in life and death. They have to start working with NICE, the government and the PCTs.”
It is five years since Mr Rodgers was diagnosed with myeloma. His mystery back pain went unexplained until it got so bad he went to the Royal Free’s Accident and Emergency department.
“You have to stay strong-willed through it,” he said. “You have to stay positive.”
While cancers like leukemia have a fearsome, worldwide reputation, myeloma, for all its destructiveness, does not have the same notoriety.
Actress Maureen Lipman, whose scriptwriter husband Jack Rosenthal succumbed to the disease in 2004, has helped increase awareness by working with charity Myeloma UK.
Its chief executive Eric Low described the to and fro between NICE and the drug companies as “a game of professional one-upmanship”.
He said: “There is now a window of opportunity for NICE and the companies to demonstrate they are capable of righting this wrong decision for patients.”
Ms Dando, who is also known for her work helping council tenants, said: “They say that David’s case is exceptional. It is exceptional that he has myeloma, but it is not exceptional that he has a right to life. Everybody has that right. The doctors must be tearing their hair out. It must be so frustrating that they know there is a drug that can help but that they can’t prescribe it because it costs so much.” She added: “When you have myeloma, you don’t have time for appeals. You can’t wait and wait for a decision because there is no time.”
Islington Primary Care Trust said: “There are no blanket bans on treatments but a treatment that might be appropriate for one patient may not be appropriate for another.”
Celgane, a company which manufactures Revlimid, said it was “disappointed” at the NICE verdict but added that it would work with the Institute ahead of a final licensing decision in January. |
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