Edinburgh MP Scott Arthur wins unanimous support in Commons for his Rare Cancers Bill

His Rare Cancers Bill passed its Second Reading in the Commons on Friday after more than three hours of debate, with the Government announcing its support and saying it would do all it could to ensure it becomes the law.

The Bill, which Dr Arthur was able to bring forward after winning a top place in a ballot of MPs for Private Member’s Bills, would initiate a review of “orphan drug” regulations which could incentivise companies to trial existing cancer drugs for treating rare cancers, encouraging life-saving treatments to be trialled in the UK.

Edinburgh South West Labour MP Scott Arthur and Public Health Minister Ashley Dalton | supplied

It would also promote clinical trials by requiring the Government to appoint a named person to provide leadership on the delivery of rare cancer research and creating a single UK database for clinical trials and patient data on an opt-out basis, giving patients increased access to trials and giving researchers easier access to relevant patients.

In his Commons speech, Dr Arthur - MP for Edinburgh South West - said: “We all know someone who has suffered from a rare cancer—a brain tumour, childhood cancer, pancreatic cancer, liver cancer, or one of the other cancers on a long list that are unfortunately all too familiar.

“Each of them may statistically be considered rare, but collectively they are anything but rare. Blood Cancer UK states that rare and less common cancers account for 47 per cent of all UK cancer diagnoses—a staggering 180,000 a year.”

And he told of the case of Tilly Anderson, who died at the age of four after being diagnosed with neuroblastoma. “Her father Jonathan, a headteacher in my constituency, is in the gallery. He reached out to me after reading about the Bill. He explained his frustration that the development of new treatments for neuroblastoma has been moving at a glacial pace for too long.”

Tilly Anderson was just 4 when she died of neuroblastoma | supplied

After the debate, Mr Anderson said: “I am so happy to see MPs choose to back Scott’s Bill. It’s an essential bit of legislation that will do so much to help prevent what happened to my family happening to others.”

Dr Arthur also cited the case of Kira Noble - known as Kira the Machine because of her resilience - who was diagnosed with neuroblastoma at the age of 11 and has now been battling the disease for more than a decade. She and her family raised £500,000 and travelled to New York for specialised surgery after being told by NHS surgeons that her abdominal tumour was inoperable.

Kira Noble has battled cancer for more than a decade | supplied

And Dr Arthur spoke of his own father-in-law, Ivor Hutchison, a teacher from Fife, who died of glioblastoma, aged 76, eight months after being diagnosed.

“He had a good life. However, as a physically fit man, Ivor should have lived longer: he should have lived to see his birthday last weekend, and if he had done so, he would not have missed two of his grandchildren getting married and his first great-grandchild being born in December last year.”

More than 20 MPs from across the political spectrum spoke during the debate, many relating the stories of friends, relatives or constituents who had suffered with rare cancers.

At the end of the debate Ashley Dalton, Minister for Public Health, told the House: “On behalf of the Government, it is my great pleasure to pledge our support for the Bill. We are undertaking fundamental reform of the NHS. People living with rare cancers must be at the heart of that change. Rare cancer patients deserve better, and the Bill gives them something that has been spoken about across the House today: new hope.

“Clinical research is one of the most important ways in which we can improve healthcare, by identifying the best way to prevent, diagnose and treat cancer.

“The Government are committed to making a real difference for patients with rare cancers. For those affected by this devastating disease, every discovery, every treatment and every moment matters. We will do all we can to facilitate the passage of this Bill.”

Dr Arthur said afterwards: “I was deeply moved by the debate and Madam Deputy Speaker perfectly captured my sentiments when she concluded the session by saying, ‘That was most definitely Parliament at its best.’

“I was also humbled to hear the charities in the gallery applaud as the bill passed. Although this may not have been ‘orderly’ behaviour, it filled me with joy.

“I am immensely grateful for the support of the Minister for Public Health, Ashley Dalton MP, who herself lives with metastatic breast cancer. Her commitment to ensuring the Government does all it can to facilitate the passage of this Bill is exactly what I wanted to hear.

“This was such a powerful step for all the patients and families who deserve better. She was saying she recognised the injustice, and will now support action to correct it.

“I am incredibly proud of what my office has achieved with this Bill in just a few months. While passing the second reading with unanimous cross-party support is a significant milestone, the Bill still has ten more stages to pass before becoming law. I have already met with some of the 40 charities who support it to discuss the next steps.”