Tamworth resident, Ryan Harding, is currently going head-to-head with the Australian Government in a bid to get the drug Belzutifan on the Pharmaceutical Benefits Scheme (PBS). The 27-year-old has spent most of his life battling with Von Hippel-Lindau syndrome (VHL) an inherited disorder that causes multiple tumours to form around his body.
VHL is a form of neuroendocrine cancer and, with the support of NeuroEndocrine Cancer Australia, Mr Harding has now amassed some 18,000 signatures on a petition, which will be presented to parliament later this year.
“Last year I was accepted to go on an Australian trial of Belzutifan, but the day I was supposed to travel to go and start the trial I got a phone call saying the company had cancelled the Australian part of the trial because they had already filled their spots in Europe,” said Mr Harding.
“That was a big blow – this drug could be life-changing for me. Belzutifan can shrink or in some cases stop my tumours growing completely but to pay for it privately will cost $12,000 a month.”
Belzutifan, which was approved by the Australian Therapeutic Goods Administration (TGA) in December 2022 has been successfully used in VHL patients in America and England for a number of years now.
So far, however, Belzutifan has not been placed on the PBS, making it an unaffordable treatment option for most VHL sufferers.
Mr Harding, whose father died of VHL at just 32, has undergone multiple surgeries from the age of 11. Many of these surgeries, whilst lifesaving, have impacted his ability to lead a normal life. He’s scheduled for his 8th surgery in June this year.
One of Mr Harding’s two brothers has also been diagnosed with the condition.
“There was a space of three years where, between me and my brother, we underwent 6 separate surgeries,” said Mr Harding.
Regardless of this, Mr Harding stays highly motivated, and positive, crediting his mum as his biggest support through darker times.
“My mum is my best friend, I couldn’t have made it through what I’ve been through without her,” said Mr Harding.
“I’ve lived with this my whole life, there’s no room for negativity it doesn’t help.”
When asked what keeps him driven on his quest to get PBS funding for Belzutifan, Mr Harding said, “Obviously I want it for myself, but also, if I can prevent another young kid having to go through what I went through growing up, it’s absolutely worth it.”
Mr Harding is now working closely with NeuroEndocrine Cancer Australia on the final details of when the petition will be presented to the House of Representatives, in the interim, he will also travel to Canberra to speak at a special parliamentary event on July 4.
CEO of NeuroEndocrine Cancer Australia, Meredith Cummins, said they have high hopes for the event.
“Our host MP is Zali Steggall, but we’re receiving a lot of support from the medically minded MPs in parliament, Mark Butler has also been incredibly supportive,” said Ms Cummins.
“Our parliamentary event will feature statements from three representatives who all suffer from NeuroEndocrine Cancer, including Ryan [Harding], we’ll also have some of the country’s top doctors and professors, including Dr John Leyden who is a co-founder of NeuroEndocrine Australia, and journalist Michael Usher, who is one of our ambassadors.”
The hope is that the overwhelming evidence will produce a fast-tracked entry to the PBS for Belzutifan.
“The standard PBS approval means that even if it is approved, it will be 466 days before Belzutifan is available on the PBS, this is too long and we will lose people in that time,” said Ms Cummins.
“We have one gentleman in Australia who is self-funding his Belzutifan treatment and he has had a 60% reduction in his tumours – It works.”
Ms Cummins has been CEO of NeuroEndocrine Cancer Australia since 2022 and is a highly experienced oncology nurse, she is also pivotal in the implementation of the Australian Cancer Nursing and Navigation Program, which aims to provide more support, both in person and via telehealth for cancer patients nationwide.
On her advocacy work with patients such as Mr Harding, she said, “Honestly it’s a privilege to work with them and we will keep pushing, not only for Belzutifan but also for more progress in the fields of awareness and support.”
For more information about NeuroEndocrine Cancer Australia, visit their website.
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