Wollongong's first official marathon for cystic fibrosis will take place in December following approval from Wollongong City Council and the hard work of Bradley Dryburgh.
Mr Dryburgh was born with cystic fibrosis and wants to use the event to raise funds and awareness for Cystic Fibrosis Australia (CFA).
While the inaugural marathon on December 12 will largely be virtual with only 15 runners physically taking part around Stuart Park and along the Wollongong foreshore, Mr Dryburgh has plans to make the #42forCF Marathon an annual event for the city. He said that would mean a lot for people with CF around Australia.
"I was born with CF and due to a lot of physical activity and great care I've been blessed to live a really healthy 24 years," he said.
"Taking 50 tablets a day and a consistent care routine is second nature. Yet like all CF patients I have my ups and downs. In mid July I had three episodes of bleeding on my lungs.
"To demonstrate the power of a positive outlook and the importance of healthy practices in CF I decided while I was in emergency recovering that I'd run a marathon by end of year. There the event and idea was born."
News of council approval coincided with a revelation this week that people with CF are set to begin another long wait for life-changing and life-extending medicines.
Vertex Pharmaceuticals submitted Trikafta to the Therapeutics Goods Administration in February and best-case scenario is that the Pharmaceutical Benefits Advisory Committee will review it in March.
Step One in the Australian Health Technology Assessment process took 13 months and Step Two involves the PBAC deciding whether to recommend Trikafta for reimbursement.
A decision is expected in April and if a positive recommendation is made commercial negotiations can begin.
Clinical trials around the world have proven Trikafta's efficacy so CFA is asking that Vertex provide immediate compassionate access to all eligible people following the PBAC decision.
CFA chief executive Nettie Burke said Vertex Trikafta revenue was estimated to be $6.6 billion by 2025 and while that was great for shareholders, "why should people with CF have to wait as commercial negotiations drag on?"
Mr Dryburgh said as a CF patient who would be one of the 90 per cent set to benefit from Trikafta he agreed with Ms Burke.
"I am blessed to be one of the healthier CF patients here in Australia and while I'd love to reap the benefits of Trikafta's proven success in clinical trials, there are many CF patients that urgently need this treatment.
"If they do not have access to this drug in a timely manner the result could be fatal."
"Trikafta is the most exciting drug to enter the cystic fibrosis world in human existence.
"I am extremely impressed in its success in the clinical trials and for those overseas who have been blessed with access to the life saving medication the results have been visibly life changing.
"If we want to save CF lives, Trikafta needs immediate compassionate access."
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