Pleas for federal funding to help kids like Luna access a life-saving treatment overseas
Desperate parents of children with rare forms of cancer are pleading with the federal government for funding to access a drug which helps prevent the disease returning. The drug is going through a fast-tracked approvals process, but there are fears it will not come quick enough and millions in funding is needed immediately.
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00:00Luna Khemri is a pint-sized dynamo.
00:05She's just your regular two-year-old, happy, sassy, bubbly, very, very active.
00:12But she's faced trials almost unimaginable for a kid her age,
00:16diagnosed two years ago with a rare form of cancer known as neuroblastoma,
00:21which cruelly targets children.
00:23You want to hold on or do it by yourself?
00:25Most kids don't live past their fifth birthday.
00:27After five rounds of chemotherapy, surgeries, stem cell treatment,
00:31a bone marrow transplant, radiation and now immunotherapy,
00:35Luna's health is improving, but she's not out of the woods,
00:38and a drug available in the United States could hold the key to her survival.
00:42It can reduce the relapse odds that are already at 60%.
00:46They can reduce it by 25% to 50%.
00:49The treatment is called DFMO, a couple of tablets a day for two years.
00:53The current cost to access it, staggering.
00:56Right now, families are having to fundraise hundreds of thousands of dollars
01:00to take their vulnerable children overseas to get that drug.
01:05Around 40 to 50 Australian kids are diagnosed with neuroblastoma every year,
01:10and Australia's Therapeutic Goods Administration is going through
01:13a fast-tracked approvals process for DFMO's use here.
01:17That could still take 12 months.
01:19We don't want paperwork to get in the way of saving young children's lives.
01:24The pleas from desperate families is for $15 million in federal funding
01:28to help them access it now.
01:30Health officials telling Parliament the drug could be provided now through other means.
01:35Hospitals simply do not have the budget to cover the cost of this drug.
01:40This is why we are asking the federal government to step in and support it.
01:45The federal health minister, Mark Butler, says he remains concerned
01:48about the plight of young children suffering neuroblastoma,
01:51and he is looking into ways to support them and their families.
01:55Options could include funding their travel overseas
01:59so they can access the drugs they need.
02:01For parents like Samantha and Taylor, that can't happen soon enough.
02:04We're just hoping that it gets here in time for Luna.
02:08Hope and love, perhaps the strongest drugs of all.