Blood cancer multiple myeloma hope with drug daratumumab price cut

Multiple myeloma, a common blood cancer, is incurable, but can be survived for years with the right treatment and medicines, which have greatly improved. Kiwis have been left out of that progress because Pharmac hasn’t funded new myeloma drugs for a decade. Now, the private cost of one vital medication, daratumumab, is set to be slashed - but only for some eligible patients.

The price of a life-extending blood cancer drug is set to halve, saving those eligible tens of thousands of dollars.

Pharmaceutical company Janssen is set to bring in a cost-share scheme for some multiple myeloma patients who privately fund the medicine daratumumab (brand name Darzalex) in New Zealand.

However, details of who will be eligible are still to be worked out, raising the possibility that a significant number of multiple myeloma patients could be excluded. Even those who are eligible will still face a bill of more than $100,000 for the first year.

The change comes after recent Herald articles on the lack of funded medications for multiple myeloma patients. One retired GP is selling his family home to fund daratumumab. The family of another patient, Simon Clark, collects aluminium cans to sell as scrap to try to fundraise.

Currently, a first year on the medicine costs about $223,000; around 23 injections or doses are given, weekly at first, then every fortnight, and later monthly.

(The cost greatly decreases in any subsequent years, because the injections are given more frequently when somebody begins on the medication.)

The Herald understands under the new scheme, a patient would pay for one dose, and Janssen would fund the next.

Confirmation of the details is likely within a month. It will not cover all patients and likely be on a case-by-case basis.

Currently many myeloma patients receive the drug “off label”, because daratumumab - like many other registered drugs - is commonly prescribed beyond its initial indication approved by Medsafe, including in combination with other proven medicines such as pomalidomide. That means health insurers often decline coverage.

Eligible patients for the Janssen scheme would still need to cover all extra costs, including an “oncology treatment fee” charged by private clinics for every dose. These can reach almost $17,000 for the first year.

Pharmac wants to fund daratumumab (brand name Darzalex), but does not have enough money. Photo / Jason Oxenham

Myeloma: A common cancer without decent funded treatments

Multiple myeloma is the second most common blood cancer in New Zealand, with about 450 new cases a year.

Currently incurable, it can be kept below detectable levels (remission) for years by treatment and medicines.

Each combination of drugs eventually stops working and myeloma returns, more aggressively. A patient must then try another option.

These lines of defence have deepened over the past 10 years. Newer medicines like daratumumab have greatly increased life expectancy and more are being released and developed.

New Zealanders haven’t benefited from that progress, however, because no new myeloma drugs have been funded since 2014.

A number of proven myeloma medicines are on Pharmac’s “options for investment” list, meaning the government drug-buying agency wants to fund them but doesn’t have the budget.

That includes daratumumab, which is funded and standard of care in the rest of the developed world, including in Australia, the United Kingdom, the United States and Canada.

Pharmac first received an application from Janssen to fund daratumumab in July 2017. About 270 to 290 New Zealanders could need the drug each year.

“Given the substantial delays that myeloma patients have faced in New Zealand, Janssen is exploring alternate access pathways for some patients,” a spokeswoman for the company, which is owned by Johnson & Johnson, told the Herald.

“The New Zealand Government now has an opportunity to make a positive difference for myeloma patients by funding daratumumab, a gold standard in the treatment of multiple myeloma, which is available in at least 48 other countries around the world.”

Haematologist calls on Government to increase Pharmac funding

Auckland City Hospital haematologist Dr Rodger Tiedemann has lobbied the Government and Pharmac to fund daratumumab and other blood cancer medications.

He told the Herald the impending price discount “will be a huge boon for the patients and families that may now be able to afford it”.

However, even the discounted cost may be too great for many, Tiedemann said, and there was still an urgent need for Pharmac funding.

“Daratumumab is a highly effective medicine that reduces the risk of multiple myeloma progression by more than 60 per cent.

“Our Government spends less than a third of what other nations spend on medicines - after accounting for population size and GDP. There’s no justification for this stinginess. In real terms, things have only been getting worse over the past decade. Something needs to be done about it.”

Pharmac negotiations with drug makers are confidential, but any price agreed would be a fraction of that charged to patients.

Before the election, National pledged to introduce ring-fenced funding for 13 cancer treatments that are available in Australia.

Blood cancer medicines weren’t included. Health Minister Shane Reti said that omission was because analysis was needed by the Cancer Control Agency, which should be done by the end of June.

“I’m continuing to take advice and consider the wider scope of work needed in the cancer diagnosis and treatment space,” he told the Herald.

“Our aim was and is to increase the number of cancer drugs and reduce the gap with Australia.”

Nicholas Jones is an investigative reporter at the Herald. He won the best individual investigation and best social issues reporter categories at the 2023 Voyager Media Awards.