Australia miles ahead in embedding the patient voice

Benchmarking research in Australia has revealed how a culture of patient involvement and further development of interactions between patient groups and the pharma industry can evolve. While embedding the patient voice has been on the agenda for the local industry, regulators and policy makers, Myeloma New Zealand has only just become the first patient advocacy group to present directly to Pharmac’s Pharmacology and Therapeutics Advisory Committee (PTAC) in New Zealand.

“We’re grateful to be able to hear directly from people who use the medicines we fund, and to talk about the medicines we are considering funding,” said Pharmac’s Chief Medical Officer, Dr David Hughes.

“Inviting the community, whānau, and individuals to share their lived experiences means we can make better-informed decisions and helps us to deliver the best health outcomes for New Zealanders.”

In reflecting on her advocacy journey, Krystal Barter, Founder of Humanise Health, said at the recent HTA Summit in Sydney “Being included in conversations…was never conceivable nor possible when I started my advocacy work over 20 years ago. We had more doors shut in our face than opened as patients. It’s different now and if you’ve been around for a while, the change is evident. We still have so much more to do.”

In 2021, new terms of reference for Pharmac’s external advisory committees came into effect. These changes meant an expanded focus on the consumer perspective, part of which included our clinical advisory experts inviting patient advocates to present directly to them.

Myeloma NZ Chair Barbara Horne said they had made a very detailed submission to Pharmac about the specific need to fund Janssen’s Darzalex (daratumumab), a myeloma treatment urgently needed by patients and clinicians, and they were very pleased Pharmac had agreed to hear this in person.

“We’re delighted Pharmac is showing the way to including meaningful patient input into its decisions on medicines funding,” said Ms Horne.

“Our objective was to give PTAC the opportunity to look beyond the clinical data and consider the profound impact that funding modern myeloma treatments would have on NZ patients’ lives. They have the power to turn myeloma into a chronic but manageable disease for patients in NZ, just as it is in other countries,” added Ms Horne.

Dr Hughes said “We currently fund thalidomide, bortezomib, and lenalidomide for multiple myeloma, but we do understand that New Zealanders have high expectations about having timely access to new cancer treatments.

“Daratumumab, as well as pomalidomide and carfilzomib, are on our Options for Investment (OFI) list, which means they are medicines we would like to fund when we have the budget available. Pomalidomide, carfilzomib and daratumumab, when used later in disease progression, are also currently being assessed for funding,” said Dr Hughes.

“They have received positive recommendations from our specialist advisory committees and the next step will be for us to rank these as options for investment.”

“It’s really important that we listen to the people who are directly affected by the access to these medicines,” said Dr Hughes.

“Hearing from patients and advocates, as well as clinical experts, helps us better understand the impact of funding myeloma treatments in Aotearoa. We look forward to inviting other patient advocate groups to present to our Advisory Committees when they’re considering funding applications for medicines the patient advocates are interested in.”

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