“Having a terminal illness is confronting and it makes you feel vulnerable,” Theresa said.
“You become acutely aware that you’re not going to live as long as you thought, and you know you’re going to miss important milestones in life.
“I will no longer be able to receive Tagrix . . . this will have a devastating effect and means I will die prematurely.”
Under the current arrangement, her oncologist writes a prescription which is received by humanitarian business Hope Pharma Connections and passed on to Beacon Pharmaceuticals Ltd in Bangladesh.
The medication is then mailed to her from Beacon Pharmaceuticals at a cost of about $1000 a month.
While there is an FDA (Food and Drug Administration) approved medication for her condition, the cost of that is significantly higher at around $10,000 a month, she says.
The only way she would qualify for that drug — Tagrisso — is if her lung cancer metastasised so significantly that it reached her brain.
Meanwhile, Tagrix has given her a new lease of life.
The cancer metastasis on her bones and liver has cleared, the tumour in her left lung has shrunk and the cancer as a whole has thinned.
“At my last CT (scan) in February, it showed I am stable, which means there is no progression and Tagrix is working effectively.
“It’s delaying the onset of my cancer, relieving my symptoms and preventing complications.”
Theresa only became aware of the bill’s impact after her husband happened to turn the television on one morning, and heard Patient Voice Aotearoa chair Malcolm Mulholland voicing concerns about the proposed changes.
Speaking to Local Democracy Reporting, Mr Mulholland said the Government was trying to prevent New Zealand patients from receiving medications that weren’t fit for purpose, even though there wasn’t any evidence to suggest this was an issue.
He felt it was a double hit for patients who were already having to fund their own medicines more than in other “developed countries”.
“The Government isn’t aware of the consequences of what it is they’re proposing,” he said.
“I think it’s a really good case of a really badly drafted bill, where they have not thought through what the consequences are.”
He was also concerned about new rules preventing people from talking about unfunded medicines.
Under the proposed legislation, there were rules against advertisements of unfunded medicines which could extend to channels such as Givealittle pages and media, he said.
“It is going to prevent patients from being able to access medicines that in many instances keep them alive.”
Theresa said she was aware of 47 other New Zealanders accessing Tagrix through Hope Pharma Connections, but Mr Mulholland suspects that number is a lot higher.
Tagrix, from Beacon Pharmaceuticals, is a generic version of another brand, meaning the medication costs around just 8 to 10 percent of the original.
Health Minister Ayesha Verrall is in charge of the bill. Her office said it would not be appropriate for her to comment as the Health Committee was still considering it.
The minister will get a report from the Ministry of Health on the submissions and proposed amendments to the bill in June.
The bill is set to replace the Medicines Act 1981.
