Edinburgh cancer campaigner Kira the Machine backs Scott Arthur's Rare Cancers Bill

Kira, 21, was diagnosed with aggressive rare cancer neuroblastoma when she was 11 and a pupil at the Capital’s Firrhill High School. Kira and her family raised £500,000 and travelled to New York for specialised surgery after she was told by NHS surgeons that her abdominal tumour was inoperable. She also had Proton Beam Therapy in New Jersey which was also not available on the NHS.

She also underwent countless rounds of chemotherapy, suffered eight relapses and was nicknamed Kira the Machine because of her resilience.

Kira is now on a treatment which was developed to treat adults with Non Small Cell Lung Cancer, and which hadn’t been used in children until 2019, when Kira first started using it.

Kira Noble was diagnosed with neuroblastoma when she was just 11 years old | Submitted

And now she is backing the Rare Cancers Bill, put forward by Edinburgh South West Labour MP Scott Arthur, which aims to improve access to cutting-edge medicines for patients and boost rare cancer treatments.

The Bill would require the UK Government to appoint a named person to provide leadership on rare cancer research; create a single UK database for clinical trials; and initiate a review of “orphan drug” regulations which could incentivise companies to trial existing cancer drugs for treating rare cancers.

Kira said: "Being diagnosed with neuroblastoma in 2014 introduced me to a horrendously petrifying world where I witnessed, and still continue to witness, innocent children die too often of this disease.

“It's a relentless cancer that desperately needs more research and more funding. Treatments for relapsed neuroblastoma are limited in the UK, which forces families to have to fundraise to pay for overseas treatment and available clinical trials.

“Scott's Bill offers real hope to those that are diagnosed with a rare cancer. It is so important that patients, particularly young people, are able to get access to clinical trials here in the UK, and that the Government takes action on tackling these left-behind cancers. It's time for stories like mine to become a thing of the past."

Kira, who now spends time raising awareness of childhood cancers, recently visited Dr Arthur’s constituency hub to talk about his Bill and what more can be done to support the fight against the disease in young people.

Dr Arthur said: “It is exactly stories like Kira’s that are the reason I chose to do my Bill on rare cancers, it’s not right that families find themselves having to fundraise to get treatments when they’re already fighting these horrific diseases.”

He added, “My Bill would mean that there are more clinical trials for cancer in the UK that focus on these left behind rare cancers, meaning that children are able to access world-class treatment for their diseases, it’s time that the UK caught up with other countries that are pushing ahead in delivering new treatments for their patients”.

Dr Arthur has support from across the political spectrum for his Bill and 35 charities have backed it. If it passes its Second Reading in the Commons today it has a reasonable chance of becoming law.