When Louis Lifshutz was rushed to the emergency department with unbearable chest pain in February, he knew what was coming.
In 2005 he was diagnosed with a rare and aggressive cancer of the thymus gland, which spreads easily and has a poor survival rate.
After two open-chest surgeries and several rounds of chemotherapy and radiation, the last few annual scans signalled he was in the clear.
But as he lay in agony earlier this year, he rightly assumed the reoccurring tumours under his breast bone were back.
“I was vomiting and in enormous amounts of pain and from that point on it had to be dealt with again,” he said.
After another gruelling round of chemotherapy, he was told all conventional methods would be ineffective; his only hope was the more targeted approach of immunotherapy.
He currently travels weekly from Canberra to Sydney to trial a new, ground-breaking treatment — even when needing only a 15-minute check-up — but the program will become available in his home town by next year.
The ACT Government will today announce $436,000 funding for the three-year Molecular Screening and Therapeutics (MoST) clinical trial, thanks to a new partnership between the Canberra Region Cancer Centre and Sydney’s Garvan Institute of Medical Research.
The program uses an individual’s genetic makeup to look for personalised therapies, as opposed to the traditional technique of guessing the best treatment based on the appearance of cancer cells.
Clinical director of Canberra Hospital’s Regional Cancer Centre, Associate Professor Paul Craft, said the trial could save lives.
“Rare cancers are a problem because they’re very hard to treat in the conventional setting,” Dr Craft said.
“As they’re all little individual tiny groups they’ve been very hard to study until this has come along.
“It would … also provide much more rapid accumulation of knowledge about how to treat these cancers.”
Concerns over prohibitive post-trial cost
Many rare cancers are incurable and collectively result in half of all cancer deaths.
While people with all types of rare cancers will be eligible to enter the trial, Dr Craft said the drug would not work for all genetic variations.
He also said continued access to drugs could be unaffordable once the trial closes.
Many rare cancer treatments are not listed on the Pharmaceutical Benefits Scheme (PBS), with immunotherapy purchased privately costing between $50,000 to $60,000 a year.
Dr Craft said that was because PBS-approved drugs required evidence from a large group of patients, which was not always attainable with uncommon diseases.
“I know there is work being done behind the scenes to develop a new way of assessing treatments for this class of cancer,” he said.
“Hopefully the evidence coming from this trial that shows effectiveness will contribute towards making availability through subsidies better.”
But Mr Lifshutz said he tried not to think about the possible financial burden, focusing only on whether the treatment would work.
He believes the opportunity to take part in the Canberra trial could “make the world of difference”.
‘Weekly slog’ travelling to Sydney for 15min appointment
Mr Lifshutz said he was so grateful for the Grattan Institute opening the trial in Sydney in August, he has been willing to make the weekly trip.
But managing the travelling and medical care with full-time work has taken its toll.
“Canberra and Sydney aren’t too far apart, but it’s a slog going up to Sydney every week just to see doctors,” he said.
“It is tiring because you’re getting up early in the morning, you’re getting home late at night … you feel like you’re already behind and catching up on everything [at work].”
ACT Health Minister Meeghan Fitzharris said she expected up to 100 rare cancer patients to enrol in the trial in the territory.
“We will be able to ensure Canberrans with rare cancer who are eligible for the latest therapies get direct access to them,” she said.
“The ACT medical community will also benefit from collaborating with a world-class institution in improving patient health outcomes and in attracting high quality clinicians to the ACT.”