Pharmac will fund an alternative anti-cancer drug for brain cancer patients after one they were taking was cancelled.

But it is not Medsafe approved and advocates say the solution doesn’t solve New Zealand’s shortage of treatment options for brain cancer patients.

The cancellation of oral anti-cancer drug lomustine, which would have made it unavailable midway through 2024, left some brain tumour patients and survivors such as Mount Maunganui’s Stacey Gardner uncertain about their future treatment options.

Pharmac this week said in a statement the Cecenu brand of lomustine would be available from mid-2024.

 “We are funding an alternative, unapproved brand of lomustine from 1 July 2024 while we work on a longer-term solution,” the statement said.

“We’re also widening access to temozolomide for people with all types and stages of gliomas to help reserve supply of lomustine for those who need it most.”

But Ministry of Health medicines regulator Medsafe has not approved the Cecenu brand of lomustine.

Pharmac director Geraldine MacGibbon said there would be no difference in how people using lomustine will access the funded treatment from July next year.

 “But because the new product isn’t registered, it will need to be prescribed and supplied in line with the requirements of Section 29 of the Medicines Act 1981,” MacGibbon said.

Section 29 permits the sale or supply of an unapproved medicine to a medical practitioner provided the Director-General of Health is notified of that supply.

MacGibbon said Pharmac preferred to fund Medsafe-registered products.

“We have made this decision now to make sure that people who need lomustine continue to have access to a product while we work on a longer-term solution.”

Mount Maunganui brain cancer survivor Stacey Gardner. Photo / Alex Cairns

According to the Act, reports of the sale or supply of Cecenu brand lomustine would need to be reported to the Director-General every month and include the name of the patient and the time and place where the medicine was sold or supplied.

Brain tumour survivor Stacey Gardner, a mother of two, said if her cancer recurred, she would not like specific reports of her treatment to be sent to the Director-General each month.

“I’d like to know why they need all that information,” Gardner said.

“It seems very invasive.”

Gardner said the ideal solution would be to have a medication that was readily accessible without all the extra pressure of knowing her information was being regularly recorded and sent to the Government.

“Having cancer is hard enough, especially when dealing with radiation and chemo. We don’t need the extra stress of having all our information shared.”

Brain Tumour Support New Zealand chair and founding trustee Chris Tse.

Brain Tumour Support NZ chair and founding trustee Chris Tse said the brain tumour community would be breathing a “huge sigh of relief” at the news that Pharmac had secured an alternative supply of lomustine.

“One of Pharmac’s strengths is their expertise in global drug procurement and we are grateful that they have used this to secure supplies of this important medicine,” Tse said.

“While lomustine is not a new drug – it was first approved in 1976 – it remains an important part of the treatment landscape for brain tumours in New Zealand.”

However, Tse said, the fact that New Zealand was still relying on an old drug developed in the 1970s showed a lack of new brain cancer treatments.

“We desperately need better treatments, and these will only come through investment in brain cancer research, including clinical trials.”

Tse said the brain tumour community was still waiting for a newer drug, bevacizumab, to be funded for patients whose tumours return.

“Bevacizumab was first approved to treat brain tumours by the US Food and Drug Administration (FDA) in 2009 and is now funded in many countries around the world, including Australia,” Tse said.

Bevacizumab helped patients with brain tumours feel well for longer, Tse said.

“Quality of life is important to our patients because when faced with a terminal illness they want to enjoy the time they have left as much as possible.”

“Access to bevacizumab can be the difference between someone staying much of the time bedridden at home or being back at work, out and about exercising or enjoying time with friends and family.”

A Pharmac spokeswoman said bevacizumab was “under assessment” for funding.

She said the procedure for unapproved medicines under the Medicine Act fell to Medsafe.

According to Medsafe’s website, only registered medical practitioners are permitted to process the sale or supply of unapproved medicines.

Reporting on these transactions was delegated to Medsafe by the Director-General of Health.