Australia

Community rallies to raise funds for child’s cancer treatment, as Medicare not an option

Uma Tomarchio was first diagnosed with a rare form of leukaemia in May 2020.
The four-year-old was born in Australia and has spent her whole life in the country, however she does not qualify for Medicare because her parents are not permanent residents.

Highlights:

  • A bone marrow transplant could save Uma’s life but the cost is at least $300,000 
  • Uma’s private health insurer does not cover the transplant and she is ineligible for Medicare 
  • Uma’s parents are temporary skilled workers from Italy, and Uma’s health conditions could make it harder for them to gain PR
Italians, Giuseppe and Lucia Tomarchio, are on temporary skilled work visas and came to Australia in 2016.
“In May 2020, our youngest daughter Uma started to feel weak. She didn’t feel like walking or playing, she was pale,” Mr Tomarchio told SBS Italian.
Their GP said Uma needed a blood test and when the results came through, their entire reality changed.

“They told us it could be leukaemia and they sent us immediately to the Royal Children’s Hospital,” Mr Tomarchio said.

In a moment, our life changed forever. We went from thinking: ‘She may be low in iron’, and expecting Uma would be given supplements, to finding ourselves entering a hospital without knowing when we would come out.

Uma was diagnosed with acute lymphoblastic leukemia, a very rare type of blood cancer but one of the most frequent among children.

Out of 307 cases each year in Australia, 200 are children.

Uma Tomarchio at the Royal Children’s Hospital, Melbourne. Credit: Giuseppe Tomarchio

Uma started her first round of chemotherapy the morning after being diagnosed and stayed in the hospital for weeks.

Within seven days, the tumour was in remission, but the total treatment protocol lasted for two years between relapses, therapies, and check-ups.
“Uma was in remission for about a year and we thought we were seeing the light at the end of the tunnel,” Mr Tomarchio said.

For the past two years, Mr Tomachio’s private health insurance has covered most of the costs associated with his daughter’s chemotherapy at the Royal Children’s Hospital.

‘Devastating diagnosis’: Cancer returns after remission

Uma’s treatment was supposed to finish in October, but in May this year, her family got some devastating news.

“I must admit that this time the shock was a lot worse than when we first heard Uma had leukaemia two years ago,” Mr Tomarchio said.

For three days I could not think, I could not talk. I could not stop crying.

Uma’s cancer had come back in a more aggressive form, known as acute myeloid leukaemia.
Her doctors believe the mutation was likely a rare side effect of her initial chemotherapy treatments.
They said Uma’s best chance of avoiding another relapse and beating the cancer for good rested with more chemotherapy and a bone marrow transplant, which would cost at least $300,000, and possibly up to $500,000 if there were complications.
An online fundraiser, set up by a family friend, has so far raised more than $377,000 towards Uma’s transplant.
The fundraiser set up on GoFundMe has received 5,100 donations.
One of donors, who wants to be known only as Claudia, told SBS Italian that Uma’s story had touched her deeply, perhaps because she’s also a mum to a two-year-old.

“I decided to donate because if my family was in this situation, we would need the community’s support,” she said.

Giuseppe Tomarchio and Lucia Gardini with their daughters Solejai, 8, and Uma, 4. Credit: Giuseppe Tomarchio

“Thanks to the incredible support we have received from the community, we were able to pay for the first deposit and get the medical team to start organising for the transplant: luckily they found a donor with compatible bone marrow,” Mr Tomarchio said.

Ubaldo Aglianò, president of the Italian organisation COMITES Victoria and Tasmania, told SBS Italian the organisation has put together “a taskforce” ready to start a larger fundraiser once Uma’s transplant details are confirmed.

He said the organisation was “deeply perplexed by the fact that a universally recognised fundamental right, such as health care” was dependent on a person’s visa status in Australia.

Temporary residents still pay tax just as those who, as permanent residents, have unlimited access to the national health service.

Mr Tomarchio and his family are on a Temporary Skill Shortage visa (subclass 482).

Uma’s ill health could jeopardise family’s PR application: agent

Mr Tomarchio’s current visa allows him to apply for permanent residency in 2025, but Uma’s health conditions could make the application process more challenging, according to Sydney-based immigration agent, Alessia Comandini.
“An applicant, and of course any dependants included in the application, such as wife, children etc., must pass a health test to be granted the visa they have applied for,” explained Ms Comandini.
“The family, including Uma, could apply when eligible for the 186 TRT Employer Nomination, [permanent residency], but they will need to obtain a health waiver,” she said.
Mr Tomarchio is a partner in a construction business that employs 20 Australians.
He says he’s been paying tax just like every other Australian.

“I feel that I should be allowed to access free medical care here, even more than in Italy where I have not been paying taxes over the past months,” he said.

Uma playing with her sister Solejai. Credit: Giuseppe Tomarchio

Meanwhile, Uma’s need for a transplant and care is a race against time that cannot wait.

SBS Italian contacted the Minister for Health and Aged Care Mark Butler’s office on the family’s behalf.
A spokesperson urged the family to investigate whether they qualified for assistance under Reciprocal Health Care Agreements (RHCAs) in place with eleven countries, including Italy.
“The purpose of the RHCAs is to ensure immediately medically necessary health care is provided in Australia’s national health system to eligible visitors during temporary stays. The same care is extended to Australians temporarily visiting Italy,” the spokesperson said.
“A temporary visa holder who is both a citizen of Italy and eligible to use Italy’s national health insurance may enrol in RHCA Medicare to receive immediately medically necessary health care.”
Uma was admitted to the hospital on August 8, 2022, and, after a promising round of chemotherapy, she is looking forward to spending a few days at home before the transplant to play with her eight-year-old sister, Solejai, Mr Tomarchio said.
“She’s never lost her enthusiasm; it is quite extraordinary. Last night, she was running around the hospital corridors dragging her drip-line hanger,” he said.

“Every experience, even the toughest, can teach you something: I have learnt to accept, respect, and that kids are incredible teachers of honesty and resilience.”

One day [Uma] told me: ‘don’t worry, dad, I am not going to leave you and mummy alone.

The medical team has scheduled the preparation treatments to start by mid-September for the transplant to happen on the 22nd.

Listen to SBS Italian every day from 8am to 10am. Follow us on Facebook, Twitter and Instagram.

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