Hearing from the people who matter most
PHARMAC had made a big effort early on to get input from clinicians and health professionals into its evidence-based decision-making processes.
But what about the people consuming the medicines PHARMAC was working hard to secure and subsidise? A 1999 report noted that PHARMAC needed to do more to listen to the voices of the people being impacted by their decisions.
So in 2002 the agency formed the Consumer Advisory Committee (CAC), which was to give users of medicines an opportunity to present their perspectives on the best approaches for delivering effective medicines to the public and provided consumer input into PHARMAC’s decision-making processes.
The CAC is not directly involved in assessment of pharmaceutical funding applications but is influential in ensuring PHARMAC is thinking about consumer issues in its decisions, talking to the right people and gathering the right information.
Its founding chair was Sandra Coney, a feminist and a women’s health advocate, whose work helped in the establishment of the office of the Health and Disability Commissioner and who had led a groundbreaking investigation into cervical cancer treatment during the 1980s at Auckland’s National Women’s Hospital.
“I was very sympathetic to what PHARMAC was trying to do, because it was trying to pay reasonable prices which would make more medicines available for New Zealanders,” says Coney.
“Pharmaceutical companies very often had countries over a barrel in terms of what they were charging for products,” she adds.
Coney’s role as chair sent a clear signal that the new Consumer Advisory Committee would not be a tame body or box-ticking exercise. The rest of the Committee was made up of equally passionate people bringing differing perspectives to PHARMAC’s role.
“They were all very seasoned activists,” says Coney. “They were people who in different fields had been very effective and outspoken.”
“Pharmaceutical companies very often had countries over a barrel in terms of what they were charging for products.”
– Sandra Coney
The Committee has been particularly active in advising PHARMAC on how best to consult with the public, especially on the introduction of new pharmaceuticals or changes to existing medicines and devices that may have an impact on the community of users.
Over the years it has pursued specific initiatives, such as helping non-governmental organisations (NGOs) navigate their often compromising relationships with pharmaceutical companies.
“We stuck our neck out and developed a guideline for consumer groups who were contemplating having a relationship with a pharmaceutical industry player,” says Coney, who admits the move was “a bit unpopular” with the pharmaceutical companies and, initially anyway, the NGOs advocating for funding of specific medicines.
Coney had gained an insight into the influence of Big Pharma on advocacy groups in her work examining the techniques used to promote, often inappropriately, hormone replacement therapy to women.
The CAC came up with best practice suggestions for NGOs to work with pharmaceutical companies without sacrificing their independence and these guidelines have been widely adopted.
The CAC has been an integral part of shaping the way PHARMAC engages with consumers, which can be seen in the public forums PHARMAC has hosted for the Operating Procedures and Policies, the Factors for Consideration review and more recently the Pacific Responsiveness Strategy.
Former CAC chair Shane Kawenata Bradbrook noted in the 2016 Year in Review that “CAC has also influenced PHARMAC to become a little softer and more approachable – we see that in the way it now goes out to the community”.
The CAC’s influence was an important part of the development of the Pacific Responsiveness Strategy in particular. David Lui, current CAC chair, notes in the 2017-2026 Strategy that “the way that PHARMAC has gone about developing the Strategy has buy-in from the pacific community that will underpin its long-term success”.
“They truly engaged and listened to understand – and that can be seen in this final Strategy document which reflects much of what the community told PHARMAC.”
The work of the CAC is as diverse as ever and the Committee, currently chaired by Auckland health consultant David Lui, who has extensive links into Pacific communities and health networks, continues to include a mix of people passionate about improving health outcomes for New Zealanders.
Last updated: 13 September 2018