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Petition runs hot with support to get child life saving drug

PETITION PRESSURE: Rockhampton mum Chantelle Honeyman is hoping a petition will help her daughter Victoria Evans gain access to a drug for children with cystic fibrosis.
PETITION PRESSURE: Rockhampton mum Chantelle Honeyman is hoping a petition will help her daughter Victoria Evans gain access to a drug for children with cystic fibrosis. Madeline Mcdonald

CHANTELLE Honeyman just wants her daughter to have the best life available for a child living with cystic fibrosis.

Chantelle's one-year-old daughter, Victoria Evans, was diagnosed with cystic fibrosis (CF) when she was three weeks old and has been fighting off lung infections with daily doses of medication, teaspoons of salt and morning physiotherapy sessions ever since.

CF is a genetic disorder that affects the lungs and digestive system because of a malfunction in the exocrine system, responsible for producing saliva, sweat, tears and mucus.

In recent months Chantelle and Clinton, Victoria's father, were given a beacon of hope for their daughter's illness when the drug Kalydeco -- used to consistently treat the CF G551D gene which Victoria has -- was approved for the Pharmaceutical Benefits Scheme (PBS) in December last year.

But the Rockhampton mum's sighs of relief quickly turned to disappointment and frustration when she discovered Kalydeco was not approved for use by children under the age of six, even though it is approved for children aged two and above in the United States.

Chantelle, 23, said there were no words to describe the feeling of knowing there's a medication out there that could help her daughter but not be allowed access to it.

"Victoria will celebrate her second birthday next month which means she is not eligible for the drug for another four years, that's a long time to wait for something to go wrong.

"People with CF are prone to reoccurring lung infections as children and lung disease further down the line. When a person with CF gets sick it causes scarring to their lungs which is why lung transplants are very common for people with CF.

"It's so important to be super hygienic around Victoria and do everything we can to prevent her from getting sick which is why we're really pushing for this drug, so she can go to childcare without the worry that she'll come home every week and end up in hospital."

According to Vertex Pharmaceuticals Australia Kalydeco is the first medicine to treat the "underlying cause of CF in people aged six and older". It's an oral medicine which helps the defective gene function more normally at the cell surface to help hydrate and clear mucus from the airways.

Chantelle and Clinton decided to start a petition last week to gain support to approve the drug for children under six.

So far the petition has over 1500 signatures.

"When she was first diagnosed Kalydeco wasn't even approved in America but in the last two years it's been approved in most countries including Australia," Chantelle said.

"But if it's approved for two-year-olds in the United States how come it's not for two-year-olds here? We know it's not a cure but we just really want this drug approved so Victoria and other children diagnosed with CF have a chance at a better quality of life early on.

"She's still so young and as soon as she gets this drug her risks of the infections, transplants and everything else decrease plus this drug has proven to give CF suffers an extra 10 years of life.

"For us it would be relief but for Victoria it would be a chance for the best start in life and a better quality of life."

Chantelle and Clinton have a meeting with Capricornia MP Michelle Landry in the coming weeks.

You can sign the petition at change.org.

Cystic Fibrosis:

Lung failure is the major cause of death for someone with CF.

From birth, a person with CF undergoes constant medical treatments and physiotherapy.

There is currently no cure.

In Australia, one in 2,500 babies are born with CF, that's one every four days.

On average one in 25 people carry the CF gene, most of whom are unaware that they are carriers.

Topics:  cystic fibrosis, petition, rockhampton




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