New patient alliance magnifies voice

By Megan Brodie 3 years ago | In Industry, Regulatory
  • 3 years ago
Nettie Burke, Mark Brooke, Jane Hill, Sharon Winton and Deidre Mackechnie of APAA

17 May 2021

An alliance of 21 patient groups representing more than half the Australian population is working to give consumers a louder voice and a more experienced presence in health technology processes, with a high-powered executive that is already kicking some big goals.

In what is a growing trend in patient advocacy circles for like-minded groups to band together, the Australian Patient Advocacy Alliance (APAA) is one of the newest alliances on the block but has now grown to employ former MS Australia CEO Deidre Mackechnie as its first CEO, albeit in a part-time role.

While still finding its feet after getting started with a funding grant from Swiss pharma giant Roche, the alliance’s high-powered committee is co-chaired by well-known consumer advocates, Cystic Fibrosis Australia and Ovarian Cancer Australia CEOs Nettie Burke and Jane Hill.

Together with the heads of the Lung Foundation, Haemophilia Australia and Lymphoma Australia Mark Brooke, Sharon Caris and Sharon Winton, the six heavy-hitters in Australian patient advocacy are working together for the benefit of a much larger cohort.

“We get stuff done,” Burke told MedNews in her usual, straight-to-the-point way of talking. “Patient alliances are the way of the future – it’s the only way to get a strong enough voice, especially for small to medium not-for-profits.”

“A lot of patient groups out there don’t have the internal skillset or the staff for advocacy, nor do they have the knowledge of government relations,” adds Hill. “The fact is we need to have a consumer voice that is coordinated and we are all wanting the same thing – better health outcomes.”

Burke says the country’s five largest patient groups are well resourced and capable of managing their own advocacy and policy development but “the rest of us need to come up with policy asks that we can all agree to, to agree that’s the direction we’re going in and to get on with it,” she says. “That’s what APAA does.”

The birth of APAA stems back to a consumer conference in late 2019 when the 21 member groups met to identify key health policy issues they felt would benefit from a collaborative consumer approach. Throughout 2020, the alliance quickly grew its presence, gaining a representative on the Government’s Preventative Medicine Review Committee and putting forward a joint submission to the Parliamentary Inquiry into Approval Processes for New Medicines and Novel Medical Technologies.

“We’ve actually got quite a few runs on the board,” says Burke. “Australia has 26 million consumers and there is room for plenty of voices to represent them. Some of those voices are passive and provide advice and some are activists who want to get out there and celebrate change.

“The Alliance is definitely the latter. We don’t sit still – we forge ahead with everything very quickly. Advocates like us are going to make things a little bit uncomfortable sometimes but fight for consumers and their rights.”

Patient push for PBAC submission transparency

Burke says one area where the alliance is looking for change is in PBAC drug submissions, saying these “should be provided to consumers and consumers should be able to comment on the submissions”.

The Department of Health recently trialled providing a ‘summary of information’ for BMS’ PBAC submission for its OPDIVO (nivolumab) and YERVOY (ipilimumab) combination in non-small cell cancer, considered in November 2020, and then again for malignant pleural mesothelioma considered by the PBAC in March, yet Burke says consumers want more than this.

“We want to be co-authors on submissions, but the sponsors won’t even give me a look-see,” says Burke. “There should be a part of the form that says you need to get support from your consumer community. That’s how it should be. We’re not asking to get the numbers page but everything else that is in there we need to see.

“It’s done in different parts of the world – in Switzerland, consumers are at the table during the finance negotiations. People can say that’s never going to happen but nobody thought there would be Covid either. Take out the finance page but everything else in the PBAC submission should be open to consumers to comment on, and we should also see the PBAC’s reply.”

Looking at the next stage of growth, the APAA is now looking to establish itself as a company and is approaching both pharmaceutical companies seeking funding and the government, looking to secure grants. As with the National Oncology Alliance and the Patient Voice Initiative, the future of patient advocacy is fast-changing, providing an opportunity for patients to have a stronger voice at the HTA table.

One response

Leave a Reply