Patient doyenne looks to next chapter

3 November 2021

When Nettie Burke walks the corridors of Parliament House in Canberra, it would be a brave politician who doesn’t open their parliamentary office door and welcome her in.

The CEO of patient group Cystic Fibrosis Australia (CFA) may be small in stature but everyone in Canberra knows that when Nettie Burke comes calling, it is best to put the jug on, settle down and listen to what she has to say.

“You get more bees with honey,” says Burke – a phrase she repeats often and that very much depicts her advocacy style as much as it does her sense of fashion. Raised in Sydney’s eastern suburbs and educated at prestigious Catholic girls’ school Kincoppal in Rose Bay, Burke never turns up looking anything less than the doyenne she is.

It is now more than six years since Burke first took the helm at CFA, a long innings for any patient advocate but particularly one who is not directly affected by a rare disease such as cystic fibrosis (CF). Yet for Burke, it wasn’t her first gig in patient advocacy. She previously worked as CEO of Arthritis NSW, served on the Board of Muscular Dystrophy NSW, and had been Marketing and Communications Director for the National Breast Cancer Foundation.

Yet arguably it was Burke’s earlier experience as Group Account Director of Saatchi & Saatchi that best prepared her for the CFA job as, among her many other talents, Burke is well known for staging effective, high-profile publicity stunts.

When campaigning to have Vertex’s CF therapy Orkambi listed on the PBS, for example, Burke organised a tribe of families to appear on Channel 7’s Sunrise before walking across the bridge to Vertex’s head office – all dressed in red T-shirts and carrying red balloons, oxygen tanks at the ready, just in case.

“The patient experience brings a strategy to life,” she says. “The patient experience has to be at the centre of everything you do, but having the policy experience to back it up is what makes the difference.

“In Canberra, politicians want to hear about policy solutions that are doable.”

As Burke prepares to hang up her CFA designer heels this week, it is of little surprise to her many friends in the industry that she is not planning to retire quietly. Instead, she is preparing for the next chapter in her life – a new venture called GoodWorks – a platform offering a range of advocacy services to patient groups. It is enough to leave many a politician quaking in their electorate seats.

As CFA this week paid tribute to Burke and prepares to transition the CEO role to her yet-to-be-named replacement, a spokesperson credited “Nettie’s strong leadership and extraordinary capacity to transform and inspire” for raising the profile of CF nationally. In truth, she has almost single-handedly turned a rare disease into a household name.

For her part, Burke says one of the most valuable lessons learned was the importance of collaboration. Not only has she worked with other high-profile advocates to form the Australian Patient Advocacy Alliance, but she has also worked with colleagues globally to form a network of CEOs representing CF patients in different countries.

“We have CEOs from the UK, Ireland, Canada, Europe, New Zealand and Australia, and while we initially came together for peer support, over time we have learned to share knowledge that has made the movement so much more powerful,” she said.

“Too often pharmaceutical companies want to believe they are Father Christmas when it comes to patients, handing out gifts that patients should be grateful for when in fact they can learn so much from patients, and it should be seen for what it is – a partnership.

“We are all operating in a global world and patients need to think globally. With GoodWorks, I want to be able to help even the small patient groups get their voice out there.”

While Burke has tackled numerous challenges at CFA, not least securing Government funding for some of the world’s most expensive drugs, one of the biggest challenges came at this year’s patient conference.

Targeting medical events where data from unpublished papers can prove to be a lucrative haul for blackmailing purposes, hackers hijacked the event and, while they didn’t get through the multiple firewalls, did manage to get it closed down. The conference went ahead last weekend without incident.

“Zoom, Netflix and TikTok were all hacked that weekend, so we were in good company. In these situations, you’ve just got to stay calm and see it through,” says Burke, always the consummate professional.

While there was never going to be a good time for Burke to depart CFA, she does so knowing she has done all she can. In six years, she has overseen three important therapies listed on the PBS for CF patients, with a fourth is up for reconsideration by the PBAC in December.

Having brought all stakeholders to the table earlier this year in an attempt to broker a deal, Burke knows there is little more she can do at this stage but is confident patients will get access to Trikafta.

“At the end of the day, the PBS is not big enough – the Government needs to put some more money into it,” she says frankly. “Treasury is putting the brakes on the PBS when the Government should be going to an election on PBS spending. Hopefully, I can make some noise and get the PBS back on the table as an election issue.”

And with that last word, Health Minister Greg Hunt will be scrambling to come up with a policy because more than anyone, Hunt knows that when Nettie Burke wants something, it’s best to be prepared.

©MedNews 2021