A FORMER headteacher from Ainsdale who has incurable blood cancer, claims he can’t get the treatment he needs after being excluded from every clinical trial in the UK because his condition is so complex.
Simon Hulme, who was the head of St Michael’s High School in Crosby, is calling for ‘equal access to treatment’ after failing to qualify for a single clinical trial in the UK.
Simon was 56 when he was diagnosed with a particularly aggressive type of non-secretory myeloma back in July 2020, a cancer so rare it affects just 116 people in the country each year.
Such was the severity of his cancer that he was forced to give up his job and for the past two years the father-of-two has “whizzed through” every treatment possible but sadly none has worked so far.
As his battle with the disease draws to an end, his only chance to survive and spend a few more months, if not years, with his loved ones is a clinical trial.
Simon said: “It feels like discrimination. The problem now is that I’m whizzing through treatment very fast. I don’t have much time left. I’ve been told a clinical trial will be my only option but I’m finding out I’m not allowed to access trials.
“I already have this rare type of cancer and now I find out there’s soon to be no more treatment or possibilities for me. It’s very distressing. If the line of treatment I’m on now doesn’t work, or even if it does work, it will run out of use in a year and there will be nothing left. A clinical trial might just mean six more months or a year but if you’ve got children or grandchildren it matters.”
Around 5,800 people are diagnosed with the incurable blood cancer myeloma each year in the UK.
Non-secretory patients like Simon make up around 2% of all cases.
Being non-secretory means that, unlike the majority of those with myeloma, Simon’s cancer and his response to treatment cannot be picked up or measured by a blood test.
Instead, he needs to undergo costly scans and bone marrow biopsies to keep track of the disease and monitor his response to drugs.
As it stands, though, clinical trials for myeloma patients measure the return of the disease through regular blood tests, which is far less expensive.
Therefore, outliers like Simon are, by default, excluded from most clinical trials for practical and financial reasons, robbing them of their last chance to keep the disease at bay and to enjoy a few more months with their families and friends.
Shelagh McKinlay, acting director of research and Patient Advocacy at blood cancer charity Myeloma UK, said: “People like Simon are in an untenable position. The odds, sadly, are stacked against them before they’ve even started treatment and, although they’re more likely to need access to clinical trials sooner, they are by the very nature of their cancer effectively excluded from them because their disease doesn’t quite fit the mould.
“Opening up clinical trials to non-secretory patients is not impossible, but it requires funding, the willingness to put the effort in and to shake up the status quo.
“We will keep fighting to change the system and make sure the forgotten 2% get a fair chance to live as well as possible for as long as possible.
“Everyone should have equal access to treatment and we will not stand by while some patients are being treated like second-class citizens.”
Simon hopes that sharing his story will lead to much-needed change and fairer access to experimental drugs and treatments for future patients. He also hopes to finally be offered access to a trial before it’s too late.