A RACE AGAINST TIME
Cancer families desperate to save kids in mire of red tape
Zai Abdollahi’s passion for soccer and rock climbing have helped him endure a punishing 12 months of surgery, chemotherapy, a bone-marrow transplant and immunotherapy. Despite the gruelling treatment there is a 50 per cent chance his rare cancer – neuroblastoma – could return.
His family is up against a desperately tight timeline to raise $300,000 for lifesaving treatment in the US that he has to start taking by July.
And the plight of Zai – and four other children who could benefit from the drug – has highlighted major inadequacies in a federal government scheme set up to cover the costs of patients who have to go overseas for treatment not available here.
“As a parent, you’re not going to take any risks. If these tablets will help Zai’s chances you’ll do everything that you have to do,” Zai’s mother Kalee Abdollahi said.
“Zai has been incredibly strong and resilient throughout his treatment.
“Zai is the one who has kept us strong. He’s an inspiration to us all,” Ms Abdollahi said.
Zai is one of five Aussie children who could benefit from arepurpose ddrugDi fluoromethyl or ni hine(DF MO) that clinical trials show could slash the risk of the cancer returning by almost 50 per cent.
The medication has previously been used to treat African sleeping sickness and facial hair growth but in a different concentration was approved to treat neuroblastoma by the US FDA in December last year. Pharmaceutical company US WorldMeds has not yet applied to have it marketed or subsidised in Australia and it could take years.
Years that Zai and other children may not have.
The government’s Medical Treatment Overseas Program (MTOP) is meant to cover the costs for treatment, airfares and accommodation for Australians who need lifesaving medical treatment in another country.
But, instead of being able to use the scheme, families who are accessing the medication for free under a US clinical trial have had to resort to raising money through GoFundMe, Instagram and charity balls.
This is because the scheme does not cover clinical trials.
To meet the conditions of the government scheme, the families would instead have to pay $15,000 for the drug every month for two years (a total bill of $360,000) and then wait for the government to reimburse them.
Four-year-old Jack Schofield also is set to join the US trial of the new treatment later this year, while Harry Sammut, 10, was accepted into the US trial for DFMO in December – after 18 months of brutal and exhausting treatment.
His strength is slowly improving and he has grown 2cm.
He has to travel to the US five times over a two-year period with a total cost exceeding $130,000, including medical costs, airfares, transfers and travel insurance.
“I’m just a mum trying to save my son,” Harry’s mother Julia
par“As a ent, you’re not going to take any risks. If these tablets help Zai’s chances you’ll do everything that you have to do
Sammut said.
CEO of Neuroblastoma Australia Lucy Jones said her organisation – together with cancer specialists – have asked the federal government to pay for the treatment in Australian hospitals under a special access scheme.
Health Minister Mark Butler said the experiences of these children were “heartbreaking”.
“The government does have options to support families wishing to access experimental treatment overseas such as the Special Access Scheme,” he said.
“And I would encourage these families to ask their treating doctors to apply under these schemes as soon as possible.”