Edward Lee: Why non-funding of cystic fibrosis treatment is unacceptable

Edward Lee has self-funded the Trikafta drug that alleviates the symptoms of his cystic fibrosis since 2019. Photo / Supplied

OPINION

Just 31 years. That is the median age of someone born with cystic fibrosis (CF) in New Zealand. It isn't a myth, it's a fact and we have the statistics to back it up.

Just 31. At 31 years of age, one has barely lived. That is roughly a third of the life expectancy of the general population. Not many people will understand how painful it is living with a condition that is going to kill you early. It is devastating, and we are forced to live differently to others.

Imagine how the CF population felt after learning about a drug, Trikafta, that could add 27 years of full health! Imagine how our parents, partners, children, and siblings felt. Twenty. Seven. Years. That is essentially double the life expectancy.

That is exactly what happened to the CF community last month when Pharmac announced that Trikafta would add 27 years of full health to the lives of people suffering from CF.

It's hard to believe that this could even be possible but it's true, and it is directly coming from a government agency.

This kind of statement would lead you to believe that this must be one of the highest priority drugs in all of history. It is on par with the discovery of penicillin, or drugs like Spinraza for SMA.

Trikafta doesn't just add a 5-10 per cent improvement, Trikafta changes CF from a life-limiting disease to a manageable condition. It lets people live.

Edward Lee suffers from cystic fibrosis, an inherited life-threatening disorder that damages the lungs and digestive system. Image / Supplied

This is why Trikafta has become the standard publicly funded treatment for over 30 countries around the world. It transforms one's life from constant hospital admissions, lung transplants, surgeries, medical scans, antibiotics, steroids, and bronchoscopies (Google it, it's horrific), to a relatively normal, healthy life. All within a few days.

I know firsthand the miracle of Trikafta. I have been on it for 2.5 years now and haven't had one lung infection, one hospital admission, and no longer have to fear a life of pain, mental health problems or leaving my wife a widow. Best of all, I get to live for a further 27 years.

Edward Lee and his wife Kalyn Ponit. Photo / Supplied

Trikafta has made me feel like I do not have CF. It is, literally, a miracle.

But here comes the kicker. Despite Trikafta being such a life-changing drug, and despite Pharmac stating that it wants to fund Trikafta, it still isn't funded. We still wait.

We still die.

We are still clogging up our already stressed health system, lying in hospital beds for weeks at a time, some of us are about to have an extremely risky (and expensive) lung transplant and we continue to further put pressure on our families, doctors, and nurses.

Without Trikafta, we continue to suck on inhaled salt water twice a day and continue to inject antibiotics into our bodies in the hope that it will clear the infections in our lungs. It's appalling.

Our doctors want to be able to prescribe Trikafta, but they can't.

Price isn't the problem anymore, that has been essentially figured out at the usual Pharmac discounts (Cystic Fibrosis NZ has stated that the price is substantially lower than $60m per annum).

Considering the current annual economic and social cost of Cystic Fibrosis is $116m, it would literally save our country at least $56m per year.

So why isn't the Deputy Prime Minister and Finance Minister Grant Robertson advocating for this to be funded? After all, he is trying to save our country from wasting money. Right?

So where is the health and disability system accountability? Where is our Health Minister in all of this? Minister Andrew Little has met with Vertex and heard firsthand from patients and doctors why we need Trikafta. He has met with Pharmac. He has met with me.

So Little must be advocating for us, right? Surely he wants the best health outcomes for this country. It should be at the core of every decision he makes.

Sadly, his silence is not the right response to such an important Pharmac announcement.

Little should be jumping up and down at the benefits and savings to our health system of such a miracle drug and doing everything in his power to make it our reality.

Our Health Minister could and should be advocating for the people of New Zealand and the often-repeated mantra of "not my decision, it's Pharmac's" is wrong, especially as Pharmac itself has publicly stated earlier in the year that it wants to fund it.

There also needs to be accountability. The people of New Zealand should not have to give away their dignity by going public about their health.

Our Minister should be the advocate, not us.

We should be advocating to Little, and he should relay that information to Jacinda Ardern, Robertson and to Pharmac, just like Australia does.

It's time for change.

The Government must be held accountable and Pharmac must move on from its focus on getting cheap, old, generic drugs for Kiwis.

Its mandate must change and Pharmac must adapt to be able to purchase precision medicines like Trikafta.

One day a cure will be announced and, when that day comes, neither Pharmac nor the government will be ready. That's not good enough.

According to Treasury data the value of a human life in Aotearoa New Zealand is worth $4.9 million dollars. So isn't every patient worth that level of investment?

Let's also not forget that fact or the broader social, equity and human costs when the health system fails them.

If we continue to under-value patients' lives and the impacts their suffering and premature death has on their whānau, communities and both our society and our economy, then we will continue to be dead last in terms of novel medicine access in the developed world, and we the patients, will continue to die waiting.

I can think of 4.9 million reasons why that is totally unacceptable.

• Edward Lee is a financial advisor with cystic fibrosis.