Blood cancer patient charity campaigns for Pharmac to fund medicine

Blood cancer patients are urging Pharmac to fund a medicine that would restore the quality of life of those suffering with the disease.

The charity Myeloma New Zealand started a campaign to press Pharmac into funding a treatment that has been standard-of-care throughout the Organisation for Economic Co-operation and Development (OECD) for more than five years.

Myeloma is a type of terminal blood cancer that inhibits the body’s ability to fight infections and it can also cause bone thinning, reduce kidney function and cause anaemia.

According to the charity, 450 people are diagnosed with the disease each year.

Myeloma NZ trustee Nichola Oakenfull discovered she had myeloma in 2021, during Covid-19 alert level three, after years of pain without diagnosis.

Patients who had had one line of treatment lived in dread of the next inevitable, more aggressive relapse, for which there were no modern treatment options in New Zealand, she said.

“We’re not talking about just prolonging people’s lives; we’re talking about restoring quality of life, keeping people well and able to continue to be a parent, a grandparent, a productive, contributing member of society, or anyone who simply wants to continue to enjoy life.”

Offshore myeloma treatments in recent years had turned blood cancer to a manageable disease that was practically a chronic illness, Oakenfull said.

But the lack of affordable access to the medicine in New Zealand held back the more than 2500 people suffering with myeloma in this country, she said.

“You could never imagine say to a diabetic – ‘Hey your disease it’s incurable, so we are going to stop your treatment after a certain amount of time.’ It’s essentially what happened to the myeloma patients,” she said.

Daratumumab is a targeted monoclonal antibody that helped slow or stop the progression of multiple myeloma in several ways.

Oakenfull said the medicine had been available and funded overseas for quite a long time, but not in New Zealand.

Nichola Oakenfull with her husband and son.
Photo: Supplied

The medicine can be found privately in the country, and it can cost up to $220,000 per year for its first year of use, she said.

“After the first year, the price privately would cost you around $120,000 a year, because once you been on it for a while, we can have a monthly dosage.”

Pharmac had been weighing up daratumumab for the past five years, despite there being extensive, compelling evidence of its significant impact on survival rates, Oakenfull said.

“Pharmac has just released a response to the Pharmac Review Panel’s report and says it plans to do more to achieve health equity. We hope that means they will treat every life as worth the same, because currently they don’t.”

The charity had put together a submission setting out the clinical evidence for funding the treatment, she said.

“It also includes a compelling volume of evidence from 17 patients of the impact of myeloma on their lives.”

Myeloma NZ was asking permission to present the submission to Pharmac in person, to give patients a chance to be heard, Oakenfull said.

The submission was the first of a number of initiatives designed to maintain the pressure until the medicine was funded, she said.

In May 2022 the government announced a $191 million budget increase over 2022/23 and 2023/24 for Pharmac’s spending on pharmaceuticals.

Oakenfull said the agency needed more money.

“The reality is Pharmac needs a much bigger budget. As they have a responsibility to keep us alive, I think it’s really important that the government is giving them more funding, so they are able to do it.”

Almost 200 New Zealanders die with myeloma every year.

Pharmac response

Pharmac director of operations Lisa Williams said medicine to treat myeloma such as daratumumab are all on Pharmac’s Options for Investment (OFI).

“This means they are medicines we would like to fund when we have the budget available,” she said.

The medicine daratumumab and other medicines were also being assessed for funding when used later in disease progression, Williams said.

Unlike other countries Pharmac worked within a fixed budget, meaning that the entity needed to make difficult choices about which items to fund within the available budget, she said.

“Therefore, unfortunately, we cannot, at this stage, provide a definitive timeframe for if or when these medicines would be funded,” Williams said.

Pharmac was working its way through options for investment list, negotiating agreements with suppliers, she said.

“We anticipate funding many more products over the coming 12 to 24 months, which should include more cancer treatments.”