‘Cruel’ cancer bill: couple move to America to pay for life-saving treatment

Joseph and Julie Moon are leaving the life of their dreams in New Zealand, forced to return to the United States to pay for the drug treatment they need to fight terminal cancer.

Joseph Moon doesn’t remember much about the three weeks after he found out that the love of his life had been diagnosed with lung cancer.

“I cried a lot, I cried in the morning and at night. That’s pretty much all I remember. She didn’t, she was very strong and she just coped with it.”

Now, a year later, the fear of losing Julie is the first thought to enter his mind when he wakes up and the last thing he thinks about each night before going to sleep.

“She means everything to me and without her, I am nothing … I wish Julie didn’t have cancer.

“I’m just focused on doing everything I can to save her.”

The “brutal reality” is that the “miracle drug” that keeps Julie alive, known as Osimertinib (Tagrisso), costs them nearly $ 11,000 a month in New Zealand because it is not funded by Pharmac and is not covered by any health insurance.

That has meant selling his boat and car, and re-shipping the family home to pay more than $ 22,000 for drug treatment so far.

On Friday, the couple watched their son marry his soulmate as he prepared to leave them, their daughter and their grandchildren in a week to return to the United States indefinitely.

“I will do whatever it takes to save her, even if it means we have to live in a basement to avoid Covid.”

In the US, Tagrisso will cost you just $ 700 a month under the country’s ACA (Affordable Care Act) insurance.

“In some ways we are lucky, many people do not have money to move to another country and cannot afford drugs in New Zealand, so they die,” Moon said.

“It is cruel and unfair, and I cannot believe that inequalities like this exist in a public health system.”

A Givealittle page has been created to support the family and has already raised over $ 8000.

Although lung cancer advocates say Tagrisso could benefit more than 200 New Zealand patients a year, Pharmac says more evidence is needed before its officials can make a decision on its funding. So far, that process has taken 10 months and an update will come “in due course.”

Meanwhile, Julie, and hundreds of others in her situation, are running out of time.

The “fit nonsmoker” was diagnosed with stage 4 metastatic lung cancer in September last year when the couple was on vacation in the United States, where they were born.

He began to experience shortness of breath and the doctor assumed it was asthma, as he had a history of the disease, and gave him an inhaler.

A few days later, she was rushed to the hospital with a collapsed lung.

They returned to New Zealand, where they have been living for the past 19 years while paying for health insurance. Julie started on a publicly funded drug that had “horrible side effects,” including severe skin rashes.

Unfortunately, the drug was ineffective and by July her cancer had spread to the liver, lymph nodes, and abdomen.

His doctor gave him months to live, Moon said.

The couple and their two children moved to New Zealand and became citizens here after Moon “fell in love with the place” during a working vacation.

“I remember our children’s eyes were wide when we arrived, they couldn’t believe the beauty in front of them … neither did we. We feel very lucky to be near the beach.”

They never expected that the country of their dreams would be one of the few places in the world that could not prolong Julie’s life.

Health Minister Chris Hipkins told the Herald on Sunday that while he “absolutely understood” why New Zealanders with lung cancer wanted the drug funded, good evidence was needed and he respected Pharmac’s independence and impartiality.

“It is not for us as politicians to guess the Pharmac experts on what drugs it buys,” Hipkins said.

A centerpiece of National’s health policy is $ 200 million over four years for a dedicated cancer drug fund. Labor is to announce its health policy next week.

Pharmac COO Lisa Williams said that publicly funding this drug would cost them about $ 8,000 per patient per month.

“The Pharmacology and Therapeutics Advisory Committee (PTAC) met to provide advice on a number of funding requests, including that for Osimertinib, late last month,” Williams said.

He said the minutes of that meeting would be posted on the Pharmac website in due course.

“The Subcommittee on Cancer Treatment is also expected to consider osimertinib, which will provide Pharmac with expert advice,” Williams said.

“While we recognize the challenges that patients and their whānau face, and their understandable desire to try new treatments, our job is to review all the evidence and make a decision that is in the best interest of all New Zealanders.”