We must incentivise research into treatments for rare cancers like glioblastoma
Ivor and his wife Sylvia (centre), surrounded by grandchildren including Ruth and Ben (left, back row)
4 min read
My lovely daughter, Ruth, is going to run a marathon. The training is proving difficult, but she is keen to raise money for The Brain Tumour Charity after losing the grandfather she loved to the condition. His name was Ivor Hutchison.
When I asked my son, Ben, what his strongest memory of his grandad was, he said it was being in his shed with him. Of course, it was more of a sun lounge-come-workshop than a shed, but it was his space. When Ruth’s primary school project was on American Indians, in the shed her grandad made her a beautifully inscribed wooden tomahawk (Ben got a mini version) to take to school. A few years later, when Ben had a fascination with Chinook helicopters, his grandad made him a large wooden one, complete with folding rotor blades and display stand. These and many of the other things he made were not trivial undertakings – they would have taken days to complete.
The brain tumour, a glioblastoma, robbed Ruth, Ben and their cousins of a fantastic grandfather.
Ivor was a dignified, loving and thoughtful man, but glioblastoma did not respect this. Following a trip to the GP to explore a new speech problem, he was quickly diagnosed in November 2017. We were blessed with a happy Christmas and New Year with him, but by May 2018 he had died surrounded by his family.
Ivor was a dignified, loving and thoughtful man, but glioblastoma did not respect this
I assumed Ivor’s story was an unusual one until Siobhain McDonagh reached out to me after I was drawn in the Private Members’ Bill ballot. She explained that 95 per cent of people diagnosed die within nine months or so, and that no new drugs had been released in decades. Siobhain, of course, has been a tireless campaigner on the issue after glioblastoma took her sister, the formidable Margaret McDonagh – the woman who was key to Labour winning the 1997 and 2001 landslide victories.
The problem with glioblastoma, like many cancers, is that it is rare. With only just over 3,000 diagnoses per year, the pharmaceutical industry needs to be incentivised to find treatments.
My family connection, combined with the evidence Siobhain armed me with, felt like stars coming into alignment, so I decided to make rare cancers the focus of my Private Members’ Bill.
Rare cancers are defined as fewer than six people out of every 100,000 diagnosed each year. Although rare, they account for about 24 per cent of cancer cases diagnosed in Europe and the UK per year. And these individual cancer types can be widespread – for example, I’ve been in contact with several MPs who have been touched by glioblastoma.
While we are still working with others to decide on the exact approach to take, our focus is the ‘orphan drug act’ model. In the late 1970s in the USA, it became evident that many citizens were being left out of medical advances. One of the key reasons for this was the small size of some condition populations. The low prevalence of a particular disease (an ‘orphan disease’) acted as a barrier for commercial investment in the research and development – this was a market failure.
In 1983 the orphan drug act was introduced to provide financial incentives to attract industry’s interest through tax credits and an extended period of market exclusivity for a drug approved to treat an orphan disease, even if it were not under patent. When the orphan drug act launched in 1983, only ten drugs for orphan diseases were on the market for patient use; by 2015, 550 were approved.
I am not wedded to the ‘orphan drug act’ model, but it is a good starting point for my Private Members’ Bill – it has been tried and tested, and could inject much needed cash into researching treatments for conditions like glioblastoma. We can no longer afford to remain idle. Ruth’s marathon, while commendable, is just one step. We must strive for a future where glioblastoma is no longer a death sentence.
Scott Arthur, Labour MP for Edinburgh South West
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