A rare condition affecting hundreds of Australians is gaining new attention, with patients calling a breakthrough drug life-changing.
Families say they finally have hope for the future, but advocates warn more research is needed to find a cure.
WATCH THE VIDEO ABOVE: Breakthrough drug offers hope for rare cancer patients
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Lana Hallowes has spent most of her life in hospital, diagnosed with Von Hippel Lindau disease at just 11 years old.
“I’ve had numerous countless surgeries including four brain surgeries, spinal cord surgery and I’ve learned to walk about five times,” she said.
Lana has lived surgery to surgery all her life. Credit: 7NEWSShe hopes this new drug will help her plan her life. Credit: 7NEWS
VHL is a rare hereditary condition causing recurring tumours all over the body. There is no cure.
“You basically live scan to scan or surgery to surgery,” Hallowes said.
But a breakthrough drug, Belzutifan, has changed everything.
For the first time, Lana doesn’t need surgery and is planning holidays with her boys.
“I have hope. I can envision my children graduating high school and maybe even having children of their own someday and meeting my grandchildren,” she said.
She is hoping to live to see her kids’ grandchildren one day. Credit: 7NEWS
Before it was listed on the Pharmaceutical Benefits Scheme, treatment cost up to $12,000 a month. Now it’s just $25.
“It’s just a demonstration of the magic of the PBS bringing the world’s best medicines to Australia at affordable prices,” Health Minister Mark Butler said.
Advocates say neuroendocrine cancers remain widely misunderstood and with limited treatment options available, they’re calling for greater funding for more targeted therapies.
