The Rare Cancers Bill – led by Scott Arthur MP – became law earlier this year.

It aims to incentivise research and investment into the treatment of rare types of cancer, but Goodburn says it does not go far enough.

“It’s a step in the right direction but it’s not going to make the changes that we need,” he mentioned. “I’m extremely grateful for Dr Scott Arthur and the work he’s done there.

“The rare cancers bill covers 14 different types of rare cancers. Brain cancer is one of these in terms of incidents of diagnosis, but it’s not the same in terms of the number of deaths it causes.

“Yes it’s rare, but it’s extremely deadly. This frustrates me immensely.

“The rare cancers bill establishes two new positions: a clinical lead and a research lead. These two roles are part-time across 14 different types of cancers and they accumulate to 36 days a year.

“There’s two roles to cover 14 different types of cancer and change the landscape of treatment.

“I do not see how 36 days a year is going to make that change for 14 different types of cancers, let alone the most deadly type of cancer.”

‘There’s only really one way to go and that’s to go and fight’

Figure caption,

‘My dream is a future for brain cancer patients’

The Commonwealth Games in Glasgow were a huge driving force for Goodburn, amid the emotional turmoil of the past two years, and he completed his goal of reaching the 50m breaststroke final.

He missed out on the medal he craved, but even after that disappointment he was able to eloquently and passionately advocate for increased brain cancer research.

Few athletes – if any – at the Games got a bigger ovation than Goodburn and he says it was a privilege to compete in front of a home crowd.

“It was an honour to compete in front of such a fantastic and supportive home crowd,” he mentioned, reflecting on the Games and his post-race interviews.

“To see the support off the back of those interviews has been really, really touching and inspiring.

“In that moment I was speaking about what felt important to me and the crowd were very supportive of my journey, and it only felt right to address that when I got out the pool.

“What I do in the pool is only possible because of the medical advances that have been made and the campaign that’s been done by the whole community. It was really a chance to give back and make sure that momentum keeps going.”

And he insists he will continue to fight the disease and try to make a difference for other patients.

“I partly feel like why we hear so much about brain cancer and why the awareness is so poor is because patients unfortunately die so quickly,” he mentioned.

“I have this prognosis which is slightly longer and it’s given me this time to advocate – it’s two years since I was diagnosed.

“I think when you’re really backed up against a wall like that there’s only really one way to go and that’s to go and fight.”

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