The Velcade Three
The battle goes on for the Velcade Three
Three Yorkshire women fighting against blood cancer are campaigning to make a vital life-prolonging drug available to all patients who need it.
THE case of David Tetlow, a cancer patient denied a vital drug that could give him a few more precious years of life, sparked a wave of anger when it hit the headlines last week.
The 56 year-old, from Haworth, was told he couldn't receive the Velcade drug, which blitzes cancerous cells, because he didn't fit the national criteria for treatment. Although the Bradford and Airedale Primary Care Trust did a U-turn at the weekend and said David would be receiving the drug after all, its initial refusal highlights serious concerns over the gulf in treatment across the National Health Service.
At the heart of this particular controversy is Velcade. The drug can prolong patients' lives by up to five years, but the apparent lottery over who does and doesn't get it is at the centre of a campaign led by three cancer patients from Yorkshire.
Jacky Pickles, Janice Wrigglesworth and Marie Morton all suffer from multiple myeloma – a type of blood cancer that can be treated but remains incurable.
The "Velcade Three", as they've become known, are campaigning to make Velcade available to all myeloma sufferers in the UK when they need it, rather than when they first relapse. "We sat down and made a conscious decision to do something because myeloma had not had any new drugs made available in over a decade and we thought it was about time they did," says Janice, explaining why they started the campaign.
The three women live within five miles of each other in and around Keighley and came together after finding themselves struck down by the disease.
When Janice, a grandmother of two, was diagnosed with the condition in March 2002 it came as a complete shock. "I was a bit short of breath so I went to the doctors. I thought it might have been an allergy and I'd come away with an inhaler, but the doctor sent me for some tests and within a few weeks I was in hospital getting treatment for cancer."
She underwent a stem cell transplant and takes bone-strengthening drugs but is likely to require Velcade in the coming months. She expects she will get it because her condition is relapsing, but claims not everyone is receiving this treatment. "There's no point spending millions on research and then not making the drugs available to patients, it doesn't make sense. It's unjust and it's unfair," she says.
"Myeloma is a strange and cruel illness. It's not like a solid tumour that you can try and get rid of, it affects your whole body and it affects different people in different ways. Some days you don't get off the sofa but the only way of dealing with this disease is to be positive, which isn't always easy."
Although Janice hasn't received a course of Velcade yet, she's seen the difference it has made to Jacky. "It gives you your life back to a certain extent and hopefully this will be a stepping stone to other drugs that will make this a clinical condition rather than a terminal one."
Jacky, a midwife at Bradford Royal Infirmary, was also diagnosed with myeloma in 2002. She is the only one of the three campaigners who has received the drug, but claims in the two years she has it's made a huge difference.
"It's helped me lead a relatively active life. I've seen my son become a teacher so I'm one of the fortunate ones, if that's the right word."
According to the National Institute for Clinical Excellence (Nice) guidelines, Velcade is given to patients whose multiple myeloma has relapsed for the first time after having one treatment, and those who've had a bone marrow transplant. But Jacky says she's been contacted by people up and down the country who have struggled to get the drug.
"We recently helped a woman from Hull who has got Velcade, but it was after her third appeal and only after we had written to her MP, John Prescott.
"It sounds good that we've helped some people but we don't think it's right that they should be fighting for a drug to prolong their life when they should be concentrating on fighting their illness. When you're ill you want a drug like this in the bag and ready for you."
She argues that consultants should decide what drugs a patient is given. "Who are the PCTs to deny the experts? They don't have the same knowledge as the consultants who see the patients."
At about £21,000 for a 24-week course Velcade doesn't come cheap, but Jacky believes the costs are not prohibitive. "Having worked in the NHS for 28 years I believe in justice for everyone, but we hear stories of inequity and we hear there's not enough money in the pot and yet I see so much money wasted on bureaucracy," she claims.
"I'm pleased and thankful that I can have the drug, but there are others less fortunate. Does that mean that my life is worth more than theirs?"
Although Velcade can improve patients' quality of life, Jacky says it isn't simply a case of popping a pill. "The treatment is quite harsh, you're tied to the hospital twice a week and you're on a drip and there's injections as well. It's not easy but what it gives you is a bit of light at the end of the tunnel.
"People tell us we're brave but we don't see ourselves as brave, you just get on with it because there's no other option."
Like Janice, though, she believes that Velcade can help her and thousands of others battling blood cancers and will hopefully lead to further medical breakthroughs. "At one time, diabetes was a killer but with the introduction of insulin it has become a chronic disease and I think myeloma could eventually become the same, but maybe not in my lifetime."
Copyright © The Velcade Three, 2010.