Families with children suffering from a rare and deadly form of cancer are pleading with the federal government to allow Australians access to a life-saving drug.
Neuroblastoma is a deadly disease that kills more children under five than any other cancer, but an innovative drug called DFMO could save them.
DFMO is not yet approved in Australia, so children like two-year-old Harris (known as Hazzy to his family) have to fly to the United States to receive the treatment.
The long trip is expensive and risky for children who are already immunocompromised, like Hazzy.Parents Tyler and Alix are lobbying the government to allow them access to DFMO before it is approved in Australia.
“We don’t understand why we can’t just be here so we can access it and why we can’t just go to the hospital we already go to,” Alix said. A current issue.
“It seems so ridiculous.”
Tyler said Hazzy is “an absolute legend” but shouldn’t have to leave the country to get the medication he so desperately needs.
“We fly (to the United States) to go to the hospital, get these pills and take them home, five or six times a year with a child who is so sick, and what that trip could do to him makes absolutely no sense to us,” Tyler said.
Pictured are Tyler, Alix and baby Hazzy. Hazzy’s parents are lobbying the Australian government to allow them access to a life-saving medication known as DFMO.
Tyler said that while “it’s been a horrible time” for his family, the DFMO is helping.
“(Hazzy) has taken this in his stride and looking back at him today, it makes you realise it’s all worth it,” he said.
The boy was diagnosed with neuroblastoma just before his first birthday and his parents Be aware that the risk of relapse is very high unless you can access the medication.
The family moved from Hobart to Melbourne to have better access to the help Hazzy needs, although this does not include DFMO.
“They have no choice but to stick together and take home a happy, healthy little boy,” Alix said.
“It’s a full-time job for both of us just to take care of him.”
The family moved from Hobart to Melbourne to have better access to the help Hazzy (pictured) needs, although this does not include DFMO.
The federal government is considering funding the cost of overseas travel for families who need to travel to countries outside the United States for treatment.
However, Hazzy’s parents want the drug’s approval to be expedited so that immunocompromised children do not have to travel for treatment.
“These are kids five years old and younger who are just trying to stay alive,” Tyler said.
‘How is this some kind of question? “(Not allowing drugs in Australia) doesn’t make any sense.”
