Lisa Burns: Courageous advocacy should be admired, minister

Glenn Ford and his son Charlie Ford who has cystic fibrosis. Photo / Andrew Warner, File

OPINION

Despite best efforts to do all the right things for the community you serve, there will always be something with the potential to undermine this.

Community organisations such as the one I lead are resource-constrained in people and funds. We work hard like everyone else in the sector, trying to get our voices heard and address the issues affecting our communities.

So, it was a shock and disappointment with a section on Q&A with Jack Tame on Sunday, May 7. He was interviewing the Minister of Health Dr Ayesha Verrall on the state of our health system. A question was put to the minister: “Pharmac appeared to deliberately mislead some media in order to co-ordinate a made-for-TV moment with the Pharmac boss hugging cystic fibrosis patients, was that an appropriate rollout?”

With clever precision, the question wasn’t answered. The minister was able to apply sympathy to the question, flipping it and stating what a tough job Pharmac has, and that she doesn’t envy them. My response to that was it’s not all sunshine and rainbows for patients and their families either, minister.

Brothers Ashley, right, and Troy Watson have Cystic Fibrosis. Ashley had access to Trikafta while Troy didn't because he was considered 'too well'. Photo / Andrew Warner, File

Verrall’s following comment is at the heart of my dismay. “Campaigns for various drugs are funded by concerned citizens but pharmaceutical companies can have influence in that way as well. We don’t see what that influence is in terms of how those campaigns are run, so I think Pharmac’s in a really tough position.”

The Cystic Fibrosis community courageously paraded their pain, suffering, and grief to the Government, to Pharmac, and to the media in a campaign, described by one journalist as a “blueprint for advocacy”.

We had the statistics, the research, and the evidence that backed up the efficacy of the medicine. This was grounded in the knowledge that more than 30 other countries already funded Trikafta, and Kiwis were going overseas to save someone they love.

Could it be that the minister believes we are not smart enough to run a great campaign fuelled by grit, perseverance, creativity, and determination; that we needed the influence of the pharmaceutical company?

Or was it just too good that we made the decision too difficult to justify saying no?

What damaging doubts could a comment such as this place in the minds of supporters and donors?

OJ Daniels, a 19-year-old living with cystic fibrosis, had a one-month supply of Trikafta anonymously gifted to him. Photo / Andrew Warner, File

Many community organisations source funds through the generosity of Kiwis, sponsors, and funders.

In the current economic climate, this is more difficult than ever before. Our revenue from donations is down by 50 per cent.

Raising such doubt about the campaigns we run is insulting and offensive.

Meanwhile, changes are being made in section 193 of the new Therapeutics Products Bill which suggests organisations like ours may no longer be able to advocate for unfunded and unregistered medicines.

As community organisations, fighting for fairer access to medicines and treatments, we have to raise our voices, deliver petitions to Parliament, ask for Health Select Committee hearings, and get stories in the media.

All this is needed to make it difficult for Pharmac and the Government to keep making excuses as to why they can’t invest in medicines and get New Zealand off the bottom of the OECD for funding new medicines.

With better investment in medicines, we could ease the current pressure on the health system and treat conditions before they become serious and cost the Government even more money.

Kiwi families are adding money to their mortgages, taking out loans, and fundraising to access medicines that aren’t funded. Those that can’t do it anymore are packing up their lives, leaving their families and friends to move to a country where the medicine they need is funded.

Lisa Burns. Photo / Supplied

How does this become a priority in the election, to help New Zealanders understand the size of this issue, that the average time to have a medicine funded in NZ is nearly eight years?

Without the ability to advocate, lobby, protest, and campaign, Kiwis needing these lifesaving medicines will lose their voice, and their right to fight for what is at the heart of it, unfair.

We were fortunate with Trikafta, we had a committed, passionate community full of courage to share how cruel cystic fibrosis is. Now we fight to keep the funding we desperately need, so we can continue providing services to our community.

Despite medicines being a huge help, they are not a cure. People with cystic fibrosis still have cystic fibrosis, and they are still navigating a life-threatening condition.

Cystic Fibrosis NZ will continue to fight to help raise awareness for what’s fair. We need a strategy for rare disorders, we need a medicines framework, and we must invest in medicines to give Kiwis a better future.

And we must continue to have the right to advocate for the medicines that New Zealanders so urgently need.

- Lisa Burns is the chief executive for Cystic Fibrosis NZ.