Simon Hulme, a former headteacher with blood cancer, is calling for equal access to experimental treatments after he was denied the chance to participate in clinical trials in the UK (Photo: Supplied)

A former headteacher with an incurable blood cancer is calling for equal access to experimental treatments after he was denied access to every clinical trial in the UK.

Simon Hulme, from Ainsdale, Liverpool, was diagnosed with a particularly aggressive type of non-secretory myeloma in July 2020.

The cancer affects about 116 people in the country each year.

During the past two years, the 58-year-old father-of-two has rapidly exhausted a series of conventional cancer treatments.

Mr Hulme initially underwent six months of chemotherapy, which he says would usually put patients into remission or significantly reduce the level of cancer.

Unfortunately, within six weeks it all broke down, again, incredibly fast, he says. So they gave me some what they call salvage treatment, which sounds as bad as it is, where I was admitted to hospital for weeks at a time, having a huge combination of other chemotherapies to try and get it down.

This bout of treatment did reduce the cancer enough to enable Mr Hulme to have a stem cell transplant in July 2021.

In most cases, successful stem cell transplants provide patients with about three years of remission. After the procedure, Mr Hulme did not go into remission.

I had no remission whatsoever, which was a real gut-wrenching thing, he said.

Now hes been told that if his current treatment is not successful in slowing the spread of his cancer, it will be his last.

Mr Hulme, who was never able to return to his role at St Michaels Church of England High School in Crosby, hopes that by sharing his story, patients like him will one day have access to clinical trials.

About 16 new myeloma cases are diagnosed every day in the UK, according to figures from Cancer Research UK. Non-secretory patients account for about 2 per cent of all cases.

Earlier this month, GSK-funded ProMMise, a new trial to extend the lives of blood cancer patients, was opened thanks to Myeloma UK, which has been supporting Mr Hulme.

The trial, which was developed by the charitys Concept and Access Research Programme, will enable participants to have earlier access to belantamab mafodotin.

But Mr Hulme wont have any access to it.

Unlike other myeloma patients, those with non-secretory conditions have to undergo costly scans and bone marrow biopsies to determine the spread of the cancer and its response to treatment.

As it stands, clinical trials for myeloma patients measure the return of the disease through regular blood tests, a far less expensive procedure.

Shelagh McKinlay, acting director of research and patient advocacy at Myeloma UK, said: 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.

Mr Hulme added: Were not even talking about a cure: certain groups of myeloma patients arent getting access to treatments that could keep them alive. Im trying to raise awareness so that someone might step forward and do something before its too late.

This fight to widen clinical trial access is for fellow suffers, but Mr Hulme is also desperate to be afforded more time with his loved ones, particularly his six-month-old and three-year-old grandchildren.

Since I was diagnosed Ive had a second grandchild, Mr Hulme said. Just to be able to spend more years with my family is all anyone wants. Thats the most precious time, but when I look down this year and into next year it looks like Im staring down the barrel of a gun.

Were talking about its my wifes birthday this month. Will I be able to get to next years birthday? Well, if it stops in September, I dont know how.

His family, who he only sees outside due to the risk of exposure to Covid and other virus pose to his vulnerable immune system, are absolutely astonished he does not have the chance to benefit from clinical trials.

Its just hugely upsetting for the whole family because they thought that it wouldnt be as short as this, he said.

Mr Hulme will have a scan in September to assess how effective the current treatment has been. Bad news will mean a shift to palliative care.

I know there are the trials out there that would give me that time, he says.

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Headteacher with blood cancer fights for treatment after being denied all clinical trials in UK - iNews