Canberra girl with cystic fibrosis lobbies the Federal Government to give all access to the drug Orkambi Twelve year black and red oakley sunglasses old Canberra girl Bella Mitchell is more than awarehow lucky she is to be on a trial for the cystic fibrosis drug, Orkambi, even oakley official 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. 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 thePharmaceutical Benefit Scheme (PBS) and its cost subsidised by the government. The Federal Government earlier this year extended listing on the PBS of the cystic fibrosisdrugKalydeco 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 changeshad been oakleys on clearance almost immediate. "Within the first two weeks, she gained two kilos, which is usually unheard of in a CF child," she said. "She felt closest oakley store 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 donspeedos 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.
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