Hundreds of cancer patients may soon have cheaper access to a life-saving drug they currently fork out thousands for just to survive. 

The Pharmaceutical Benefits Advisory Committee has recommended extending access to Retevmo (selpercatinib) on the Australian Pharmaceutical Benefits Scheme to patients with medullary thyroid carcinoma (MTC). 

MTC is a rare, sometimes hereditary, type of cancer that forms in the thyroid gland. 

The drug has demonstrated strong response rates in patients with advanced MTC, including NSW South Coast father-of-three Clinton James. 

The 42-year-old accessed the medication through pharmaceutical company Eli Lilly’s compassionate access program, after the Albanese government initially indicated the drug would be on the PBS for MTC by March 2025.

Mr James was told he would have to pay $8,000-a-month after his subsidised access to Retevmo was withdrawn by Eli Lilly – more than his family’s monthly income.

Other MTC patients were told it would cost them up to $16,000 per month.

Rationing the supplies he had left against his doctors’ wishes, Mr James launched a last-ditch bid to get affordable access to the drug keeping him alive.

South coast father-of-three Clinton James (pictured) has welcomed news that a life-saving cancer drug has been recommended for PBS listing

Clinton (pictured with his family) hopes the drug will be on the PBS sooner rather than later

He welcomed the recommendation but noted several processes still need to be ticked before it receives the green light for the PBS, which could take up to five months. 

These include pricing negotiations between the manufacturer and the Department of Health, Disability and Ageing, finalising details for the PBS listing, quality and availability checks, and consideration by the federal government.

Retevmo currently costs $25 for eligible lung cancer patients on the PBS.

‘This isn’t just about me – it’s about every Australian cancer patient who deserves access to the best available treatment regardless of their financial situation,’ Mr James told the Daily Mail this week. 

‘While the PBS listing is fantastic news, it’s incredibly hard knowing patients may still have to wait another three to six months before they can actually access the treatment at an affordable price. 

‘For many cancer patients, time isn’t something we have in abundance. Every month of delay matters when you’re fighting for your health and your own financial circumstances.

‘Our hope is that the medication will be streamlined through the necessary processes so those who need it sooner rather than later will benefit.’

Mr James was first diagnosed with MTC in 2016, a rare thyroid cancer that cannot be treated effectively with chemotherapy or radiation. 

Clinton and his mother Debra Gibson (pictured with Liberal MP Phillip Thompson) recently travelled to Canberra to lobby department officials and both sides of parliament

The NSW South Coast dad is desperate to see Chris, 14, Shayla, 11 and Thomas, 2, grow up

Despite numerous surgeries, the cancer has continued to spread. 

However, Retevmo has stopped both existing and new tumours and dramatically improved his quality of life since he began taking it two years ago. 

The prognosis would be dire if Mr James stopped taking it.

‘The success it has had in halting the cancer would be for nothing,’ he said. 

‘Doctors have told me that the cancer will come back aggressively and spread.

‘No one should have to explain to a loved one’s family that their early death could have been avoided.’

Mr James launched a fundraiser so that he can continue life-saving treatment as he waits for Retevmo to be listed on the PBS.

Aussies rallied around him and raised $40,000 to give him a fighting chance.

The drug is subsidised for MTC in several countries, including the UK for the last five years.

Up to 436 Australians are diagnosed with MTC each year, according to NeuroEndocrine Cancer Australia chief executive Meredith Cummins.

Ms James has been battling medullary thyroid carcinoma for the last decade

The PBS listing of Retevmo for MTC patients has been delayed by inconsistent advice and excessive bureaucracy

‘PBAC’s recommendation is an important step forward for Australians living with medullary thyroid carcinoma and for families who have been carrying the financial and emotional burden of accessing this treatment on their own,’ she told Daily Mail. 

‘For some of these patients, selpercatinib (Retevmo) has the potential to be life-changing. No one should have to fundraise to access a treatment that could extend or save their life. 

‘This recommendation has brought real hope to patients and families and marks meaningful progress toward affordable, equitable access through the PBS.’ 

The PBAC acknowledged that feedback from patients, healthcare professionals and organisations played a vital role in its recommendations.

‘The PBAC noted there was evidence that selpercatinib delayed the time before cancer worsened compared with current treatments,’ it stated.

‘The PBAC considered that the price proposed for selpercatinib was unacceptably high, and value for money was unclear because it was uncertain how long patients would stay on treatment and what the long-term benefits would be.’