A bill to highlight the need for research into cancers which are designated “rare”, and which was introduced by Dr Scott Arthur, MP for Edinburgh South West, has now progressed to the House of Lords.
A first reading of the Rare Cancers Bill has already been heard in the Lords, it is expected to returns there in the autumn for its second reading.
The purpose of the new law is to “make provision to incentivise, research and investment into the treatment of rare types of cancer”. These are the group of cancers in respect of which little progress has been made in researching treatment or a cure.
The Rare Cancers Bill is what is known as a ballot bill – a type of Private Members’ Bill used in the House of Commons. Around ten months ago Dr Arthur was chosen to pick a numbered ping pong ball out of a goldfish bowl at the start of the parliamentary term to give him the chance of proposing a Ballot Bill. He was then able to choose his own subject matter.
Dr Arthur said: “It feels like things are lining up. The vast bulk of these bills do fail, so it’s tremendous to get this far. And let’s hope it doesn’t fail, but what it’s done so far is it’s really got people talking about rare cancers, and it’s really put some of the charities which support this sector in the spotlight, and it’s been a chance for them to connect with people as well.”
He continued: “What got me started on this was that my father-in-law died of a type of brain tumour called glioblastoma, which is a rare cancer type. It wasn’t until I drew the ballot and people started to contact me about what I could focus my bill on that I found that the type of brain tumour he died from – there’s been no real progress in terms of treatment for decades.
“And what happened to him, he died around six months after a diagnosis. That is not unusual. I think on average, glioblastoma, nine months. Some people do live significantly longer than that, particularly if they manage to get surgery. But nine months is the average life expectancy after diagnosis. And it’s the same for a lot of cancers in this field where there’s just not been the progress.
“I spoke to the father of a preschool child, she had neuroblastoma, which is a type of cancer which attaches itself to your internal organs, and she died. And again, same story, he found out there’s just so little money going into researching that cancer type and just not enough progress. And people in Edinburgh will remember Kira the Machine, the teenager, she had the same type of cancer and she’s been able to access trials and cutting edge treatments, but still 10 years on, she still has the cancer and it’s still a big part of her life.”
“The bill has the backing of around 40 charities which was useful as the bill came to the House of Commons for its Third Reading to be met with many amendments from fellow MP Sir Christopher Chope. The charities sent 120,000 emails to their supporters and some contacted their own MPs which meant the bill had a lot of support to get through the Commons.
“I think I’ve said this many times, I’ve always felt it was better to come away with something rather than nothing. Some of the private members bills, what MPs do, because they know how difficult it can be to succeed. What they do is they aim really high and they create a fantastic campaign because it’s about raising awareness and they accept that ultimately there’s a good chance it’s not going to succeed. But our focus is on succeeding and actually delivering something.”
His parliamentary colleague Tracy Gilbert also secured a Ballot Bill – hers was a different topic completely – the Absent Voting (Elections in Scotland and Wales) Bill, and that has also passed to the House of Lords for a Second Reading.
Third Reading
Dr Arthur said in the House of Commons during the Third Reading that when he was successful in having his bill supported he got “so many emails, many of which were about glioblastoma. The reality is that someone who was diagnosed that day with glioblastoma would more than likely be dead by now – that is how serious the condition is”.
The Edinburgh South West MP has used the parliamentary time to mention several constituents who have or have had a rare cancer. He said: “I shared the tragic stories of a young constituent called Tilly, who passed away from neuroblastoma, and Kira, who has lived with the same condition for a decade—half of her life. I am proud to wear the Solving Kids’ Cancer badge, which Kira’s mother Aud gave me when I last met her.
“One lady travelled quite far to meet me at my constituency surgery in July in Tesco in Colinton Mains. Her daughter was diagnosed with a sarcoma. In Tesco, next to the bleeping self-checkout aisles, she told me about the uncertainty she had faced after that diagnosis and how she had found it impossible even to understand which trials were available, let alone access them. I could see that she had felt powerless and had lost hope. The other reason she was in Edinburgh – perhaps the most important reason – was that she was meeting her ex-husband to scatter her daughter’s ashes in a local park. What is happening to people who face these conditions is quite incredible, so it is right that we seek to address them.”
He explained to the House that there are three recurring themes in all the stories he has heard – the first is frustration, the second is perseverance and the third is that every story concludes with an offer of help from those patients who “know that their options are limited”. Dr Arthur said: “For far too long, rare cancer patients have been left behind—as medical science makes significant progress in many other complex fields, we have not seen enough progress in this one—but they feel this piece of legislation could mark a meaningful shift for many and turn out to be life-altering, perhaps even lifesaving, for some. There is one statistic that I often mention: rare cancers are not really rare, as they account for 47% of all cancer diagnoses in the UK each year. That equates to 180,000 people. If you are one of those 47%, two things are true: you are more likely to face outdated treatments and you are more likely to die.”
The bill should spark a government review of what are known as “orphan drugs” – a term which Dr Arthur says he dislikes.He prefers to talk about rare conditions – to explore new ways of getting the drugs companies to try to find innovative treatments for rare cancers. He hopes this will reduce barriers to research and also mean more trials are conducted in the UK, so saving more lives.
