Twelve-year-old Canberra girl Bella Mitchell is more than aware how lucky she is to be on a trial for the cystic fibrosis drug, Orkambi, even knowing that, any day, access to it could end and the only way she could continue to take the drug would be by her parents somehow paying $250,000 a year for it.
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The young Canberra Girls Grammar student says the impact of the drug on her health has been remarkable and she wants every young Australian who needs Orkambi to have it, even writing last year to then federal health minister Sussan Ley to plead her case for the drug to be put on the Pharmaceutical Benefit Scheme (PBS) and its cost subsidised by the government.
"Being on the Orkambi drug trial has meant so much in terms of my health," Bella wrote in her letter to the minister.
"I have put on weight, am breathing well and have stayed out of hospital.
"It's hard to write a letter like this to someone that holds such a high title and is a role model and a leader.
"It is hard trying to convince people that this drug is worth lives, and that it is worth helping young Australians.
"Quite frankly, I don't feel like the government cares."
Bella further wrote in her letter: It saddens me to hear that families are now waiting for access to these drugs after seeing their child's health improve but are now watching these improvements slip away just because it costs too much and because it is apparently not worth it".
The Federal Government earlier this year extended listing on the PBS of the cystic fibrosis drug Kalydeco to also include children under six. But it rejected a submission for Orkambi to also be listed on the PBS. The drug company Vertex says about 1000 Australians with cystic fibrosis, as a result, "have no access to the only medicine to treat the underlying cause of their disease".
A Year Seven student, Bella is believed to be one of only three children in Australia in her age group who are on the Orkambi trial run by Vertex.
Her mother Fiona said the family was approached to be part of the trial through their connection to Westmead Hospital, where Bella was treated. The Orkambi trial started in 2015.
Mrs Mitchell said the positive changes had been almost immediate.
"Within the first two weeks, she gained two kilos, which is usually unheard of in a CF child," she said.
"She felt like she could breath easier and felt better."
Bella also had to take a range of other medication and do physiotherapy. Mrs Mitchell said it was unknown how long her daughter would have access to Orkambi.
"At any stage, the drug company could actually stop supplying it," she said. "I don't think that's their intention at the moment."
Mrs Mitchell said it was the third time Orkambi had been rejected for listing on the PBS.
"It was devastating for the whole CF community," she said.
Bella is also a keen fundraiser for Cystic Fibrosis ACT and its Santa Speedo Shuffle, which is on again on July 30.
Brave Canberrans will don speedos and Santa hat to shuffle around Lake Burley Griffin, starting from the Southern Cross Yacht Club in Yarralumla.
Cystic Fibrosis ACT hopes to raise $200,000 from this year's Santa Speedo Shuffle to continue to help more than 100 sufferers in the Canberra region.
"Bella participates every year in the Santa Speedo Shuffle under Team Bella and her team has raised in excess of $14,000 every year," Mrs Mitchell said.
"She's the most amazing, resilient kid."
Registrations for the Santa Speedo Shuffle are at https://santashuffle.org.au/
