A GREAT grandfather who is fighting terminal cancer is battling to make a drug he claims has helped extend his life available to all.
Max Smith, from Kintour Road, Ansdell, was first diagnosed with myelofibrosis, a type of blood cancer, 28 years ago, but says his quality of life has been improved by the drug – known as Ruxolitinib.
However, the National Institute for Health and Clinical Excellence (NICE) has recently offered draft guidance to the NHS saying it should not be legally obliged to fund the drug in all areas of the country due to cost implications.
The average survival rate of myelofibrosis is seven and a half years, but Max, now 74, has been using the drug since the late 1990s – having journeyed more than one million miles in total to attend clinical trials in the USA and Europe.
Now, he wants others to be able to get access to the drug which has helped him and gave evidence to the committee which produced the report.
He said: “The fight will go on and we’re not throwing in the towel. I feel truly sorry for other patients but all is not lost, I shall continue to help in anyway I can.”
The drug has been used in Blackpool since last July, and Blackpool Victoria Hospital (BVH) has confirmed it will continue to be available to myelofibrosis patients who meet certain criteria.
Around 40 patients are currently treated for the disease by the hospital but the drug is only suitable for those in its latter stages.
Dr Paul Kelsey, consultant haematologist at BVH, said: “It’s suitable for those with very large spleens, it’s helpful in patients who have got marked systemic symptoms such as weight loss, night sweats and exhaustion – that’s its key value.
“It’s a rare disease but people with it live a long time and I’m in favour of its use in selected patients, but it’s not a miracle drug and it’s not a cure.
“It’s been very helpful for Max and he’s responded to it well over the years.”
Prof Carole Longson, health technology evaluation centre director at NICE said the organisation needed to be sure the treatment “is both clinically and cost effective, because money has to be diverted from elsewhere to pay for it.”
A public consultation is taking place, with NICE’s final guidance to be published in June. Those wishing to comment may do so at www.nice.org.uk