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A bitter pill

I am writing a few words tonight as I listen to the beat of my own heart. That’s not some sort of metaphor for how much I believe in what I’m saying - though I do - but rather a habit borne out of living with chronic heart disease and wondering whether I’ll ever receive the drug that will let me grow old.

It’s been quite a week.

In the latest chapter of a story that has been widely reported on, Pharmac's Chief Executive Sarah Fitt has made an apology of sorts for her inappropriate comments about journalist Rachel Smalley. These comments were made in a series of internal emails with other senior staff, revealed in an OIA request lodged by Smalley herself. Despite the public outpouring of disgust at the comments, Steve Maharey, Chair of Pharmac, has stated to the media that the board has accepted her apology.

Well I guess that is that. 

Unfortunately for those of us who have been involved in the increasingly quixotic endeavour of trying to reform Pharmac - a quest that we’ve pursued while losing colleagues and loved ones along the way -  this lacklustre expression of regret by the Pharmac CEO is a bitter pill to swallow.

In the interests of full disclosure I suffer from a rare disease for which there is no funded therapy in New Zealand. I’ve taken part, enthusiastically, in Smalley’s Medicine Gap campaign and I’ve had many conversations with her about the lack of medicine access in our country. I took part in the review of Pharmac and, as Chair of Rare Disorders NZ, I have discussed medicine access with three Ministers of Health and several Health Select Committees. 

On the one hand we face a systemic problem which requires deep changes within a reformed health system. On the other, it's personal: the choice in front of me this Christmas is to leave NZ with my family to seek treatment elsewhere - an uncertain path - or to stay here and die young - which I suppose has the benefit of being more certain, if somewhat less appealing. 

I’ve always felt that Pharmac might, one day, be our greatest ally in removing the barriers facing those seeking treatment, but unfortunately and for reasons well enumerated by The Pharmac Review, it often ends up taking on the role for patients and advocates of a great adversary.

But I guess I am nothing if not an optimist.

Wherever possible I’ve sought to engage with Pharmac constructively. When they offered me the chance I was among the first patients to participate in the Advisory Committee process to provide a patient perspective. Over the fifteen minutes we were given, my brothers and I presented our case to a panel of experts to convince them to recommend life-saving medication for me. I’ll never forget saying, through my own tears and those of my brothers, that I deserved to live.

To beg for your life is not an uplifting experience. 

Ultimately, however, I came to see this plea as a personal act of trust, a gesture of good faith in a system that was trying to reform itself and which might yet hear this plea and act upon it.

Then I saw the emails.

The comments made about Rachel are bigger than a CEO’s frustration with the demands of a headstrong journalist. These comments hurt every advocate who has ever worried they might not be taken seriously, who has ever thought an official was rolling their eyes at them. They reinforce the thoughts of anyone who has hesitated to raise their voice for fear of being slapped down again. 

They revealed, in all of their puerile inanity, something ugly in the culture of Pharmac: contempt for the people they are meant to help.

This contempt is poisonous. It spreads throughout an organisation. It colours the way people are perceived. Patients seeking treatment are at risk of being seen as problems first and as people second. Given that Pharmac is seeking more patients to be involved in the decision making process, and given the importance of understanding the lived experience of those seeking treatment, this erosion of trust among the very people Pharmac is meant to be engaging with is a critical problem.

I’d like to point out, however, that these criticisms are not a personal attack on the staff at Pharmac. Those I’ve encountered have been passionate, committed, and empathetic people. They deserve better from their leadership too. 

All of which brings us to Steve Maharey and the Pharmac board. Faced with evidence of this contempt at the highest level and the erosion of trust in an agency already beset by a lack of credibility, their response has been an insincere apology (which fails to say sorry to the people these emails hurt the most, including Rachel Smalley) and a list of actions that do not address the core problem: that patients do not have confidence Pharmac is acting in their best interests.

This is foremost a failure of governance. In light of this, Rare Disorders NZ has called for the removal of Steve Maharey as Chair of Pharmac. Will such a move restore trust in the agency? Probably not, on its own, but it will create the opportunity Pharmac needs to evolve into the agency it ought  to be - our greatest ally in the struggle to provide equitable access to medicines in New Zealand.