Plea for access to new drug for girl diagnosed with brain cancer
Laylah Smith, 12, has a deadly form of brain cancer and a new, experimental drug may help, but it is not available in Australia. Now her family are considering selling their home to travel to the US to try and gain access to the drug trials.
NSW
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A family is preparing to sell their home to get access to a new drug to try and help their daughter, who has a deadly form of brain cancer.
Laylah Smith, 12, was diagnosed with an aggressive brain stem tumour called diffuse intrinsic pontine glioma (DIPG) in May last year.
Doctors told her parents that, apart from radiation, there was little available to halt DIPG, which has a survival rate of between eight and 12 months and kills about 20 Australian children a year.
The new drug, ONC201, is being trialled in the USA and Germany but not Australia. It costs about $1800 a week.
“When the doctors tell you there is no cure, there is nothing they can do (and your child) has only nine to 12 months and that’s it, you start researching and finding anything you can,” her mum Kiera Mercer, 33, said.
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Over the past two years, The Sunday Telegraph has followed the fight for DIPG treatment and hope for Josie Dun, 4; Annabelle Potts, 5; Annabelle Nguyen, 5; Carys Bradshaw, 8; Doris Sun, 4; Kye Funch, 6 and Amity Rogers, 6. All have passed away.
ONC201 has been shown to kill tumour cells in studies overseas but the family cannot access the drug in Australia.
“Overseas they have clinical trials open that aren’t here yet. I have also reached out to the Health Minister (Greg Hunt) to get the ONC201 drug, but is not happening,” she said.
“What needs to change is we need to be on the same level as overseas, we need to have the same options. We have four weeks left of the drug. It is the only drug that seems to have any hope.”
Ms Mercer said her only option was to travel overseas to try and get on a trial or access the drug on a compassionate basis.
Dr Matt Dun, a Newcastle-based cancer researcher was in a race against time to try and save his four-year-old daughter Josephine from DIPG. Josephine died on December 14 — 22 months after she was diagnosed with DIPG.
Dr Dun managed to get her onto a ONC201 by travelling overseas and Josephine lived a year longer than her prognosis.
“It helped in combination with other drugs,” Dr Dun said.
“She got 55 weeks post-progression — 668 days when survival is less than 300.
“We need to be more open in Australia to experimental treatments with DIPG.”
Kathie Potts lost her five-year-old daughter Annabelle last January. In the face of no treatment options, her family went to Mexico to trial experimental treatment that also failed. Now she is trying to get ONC201 into Australia.
“It is the new go-to drug and it is prolonging children’s lives,” she said.
“I’ve been working with charities to try and get this into the country for these families but we are having a lot of trouble.
“This should not be happening in Australia when you are given that terminal prognosis. It makes me angry these families are having to do this.”
Dr Geoffrey McCowage, head of the Australasian Children’s Cancer Trial and paediatric oncologist, said preparations for an Australian trial of ONC201 were underway but it would take time.
“We are navigating the complex process to provide a way to access the drug,” Dr McCowage said.
Laylah’s family has turned to crowd-funding to access ONC201. To donate, go to
gofundme.com/f/ljs-fierce-battle-against-dipg
Originally published as Plea for access to new drug for girl diagnosed with brain cancer
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