The Voices

These lives can’t wait; New Zealand needs to fund this drug now

Cystic Fibrosis

Opinion by Ed Lee, 5 November 2021

Ed Lee with wife Kalyn Ponti

No parent ever imagines their new-born baby won’t live to see adulthood.

That thought is every family’s nightmare.

I know.

I have a medical condition where the median age of sufferers is 18 years old.

No parent ever gets used to watching their child struggle to breathe. Imagine witnessing your child’s lifetime of suffering from chronic lung infections, liver failure, cirrhosis of the pancreas, risk of diabetes and a declining lung function, all of which result in frequent hospitalisations and a severely shortened life expectancy.

Now imagine asking what you can do to prevent this and being told there is no treatment available in New Zealand.

This is the reality of Kiwis with cystic fibrosis (CF).

There is no sugar coating this condition. CF was a death sentence – until now.

The new treatment, Trikafta, treats the underlying cause of CF. It is funded in more than 20 countries worldwide, including the USA, Ireland, Canada, the UK, Switzerland, Germany and Malta.

Pharmac, New Zealand’s drug buying agency, has confirmed that Trikafta supports patients with CF to lead a nearly normal life.

I am living proof that Pharmac is correct.

CF can mean a lifetime of suffering from chronic lung infections, liver failure, cirrhosis of the pancreas, risk of diabetes and a declining lung function.

I have had privately-funded access to Trikafta for 588 days and can confirm that it has saved my life. My wife and I were starting to plan for the worst, but I now live a normal life and we are planning for the future.

In the last 18 months, my lung function has increased significantly, my liver is functioning and I’m no longer at risk of diabetes. My scheduled sinus surgery has been cancelled, the lung transplant conversation is off the table and I am no longer at risk of needing daily insulin.

My mental health has improved and I’ve stopped worrying about leaving my wife a widow.

Physicians crowd around my results in disbelief, and my specialist recently informed me that we can reduce my check-ups, freeing up time to help others who desperately need it.

If you saw me in person, you would not know that I suffer from CF.

All of this requires just three pills a day. Trikafta is a miracle drug.

Pharmac has independently stated it wants to fund Trikafta. It gave the drug its highest level of recommendation, rating it a “high priority”.

Despite Pharmac completing a positive economic health assessment, and its expert clinical advisory panel strongly recommending the funding of Trikafta, it is still not funded in New Zealand.

In the last 18 months, my lung function has increased significantly, my liver is functioning and I’m no longer at risk of diabetes.

There are some key financial metrics that support the funding of this drug, not least the significant reduction in hundreds of hospitalisations every year and an 80 per cent reduction in lung transplants.

CF places an enormous burden on our health system. If the government funds this drug, it removes that burden.

Last week, in a shift away from its usual language, Pharmac described Trikafta as a “paradigm shift” in the treatment for patients with CF. It treats the cause of the disease, not the symptoms.

You might think that given Pharmac’s expert, clinical advisors have recommended the drug be funded, it might happen soon. But this is when reality kicks in.

Pharmac, even after it negotiates a discounted price with the pharmaceutical company, does not have the budget: It is a critically underfunded agency.

New Zealand ranks last of 20 OECD countries for per capita medicine funding.

Pharmac simply doesn’t have enough funding, and hasn’t for years, with its mandate being expanded to include not only pharmaceuticals, but also medical devices, vaccines, hospital mattresses and beds. Most budget increases were simply made to cover these additional items.

I shudder to think of the effect that Covid has had on Pharmac’s budget.

Ed Lee and wife Kalyn Ponti conquering the Routeburn Track

Medicines may cost more, shipping costs continue to rise, and, all the while, our population and its health needs continue to grow.

Pharmac is starting price negotiations with Vertex Pharmaceuticals, and once a price has been agreed, Pharmac will need to make sure it has the budget capacity.

One thing we know for sure is that Pharmac will only receive its next budget increase in 2022, so Pharmac and Vertex need to get creative now.

One idea could be for Vertex to immediately strike a five-year deal with Pharmac, perhaps with Vertex providing Trikafta at minimal cost for the first 12 months, with annual payments scaling up over the five-year term.

Perhaps Vertex could provide the medicine for free, immediately, in good faith, on the assumption that it will be funded in May next year? Or perhaps there could be a balloon payment at the end of the initial term if the assumed cost savings were achieved?

Waiting until next year is not acceptable; these lives can’t wait. Trikafta needs to be funded now and New Zealand needs to play catch-up with the rest of the developed world.

So, Grant Robertson, Andrew Little and Prime Minister Jacinda Ardern – Pharmac is coming knocking on your door to enable it to fund this miracle treatment to save lives.

Pharmac has done its job and independently stated it would like to fund Trikafta, so why not send out an early Christmas present to the cystic fibrosis community by announcing a new, significant boost to Pharmac that would allow it to fund not only Trikafta, but also other medicines flagged as a high priority?

There are 74 medicines on Pharmac’s waiting list that it would like to fund.

Labour would be viewed as a hero if it gave the go-ahead to fund these. It would save lives, change lives and ultimately save money for the hospital system.

Don’t let us wait until May – Pharmac has spoken and made its decision.

Our lives count. Please, on behalf of every sufferer of cystic fibrosis, don’t look the other way.

So many lives depend on it.

Ed Lee and wife Kalyn Ponti celebrating “Happy Trifakta Anniversary”!

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New Zealand needs access now to modern medicines to treat Cystic Fibrosis.

Other Voices

Let’s close the Gap

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Achieve a measurable, political commitment to reform Pharmac and create a fit-for-purpose drug-buying agency that supports and enables greatly improved access to modern medicines – and ensure a direct line of political accountability.




Introduce a globally accepted modern, cost-benefit analysis for medicines and medical devices which looks at the ‘value’ of a medicine, and considers the financial, economic, and social impact of untreated disease on our society.




Develop a Medicines Strategy to guide the decision-making process, create measurable targets to reduce Pharmac’s waiting list, and detail how the agency will respond to rapid developments in modern medicine to improve health outcomes for New Zealanders.

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