A terminally ill mum-of-two is pleading with the Government to reassess proposed legislation that will make it illegal for her to access life-extending medication.
Patient Voice Aotearoa said if the Therapeutic Products Bill is not changed, it will not only cost lives but stop the media and advocates from publically advertising unfunded treatments.
Theresa Zame is terminally ill.
Last June, she was diagnosed with stage four lung cancer and was told she had just nine months to live.
"All the things that you had planned for life, that's all going to change and some of them aren't going to happen, it's hard," Zame said.
But since taking the medication tagrix, she said the cancer, which had spread to her liver, has gone and the tumour in her left lung has shrunk.
"It's completely changed my life," Zame said.
Tagrix, a generic version of the AstraZeneca drug tagrisso, is not funded or registered in New Zealand. So Zame accesses it from Bangladesh via a prescription from her oncologist.
Tagrix costs $1000 a month and tagrisso costs $10,000.
"We just don't have those sorts of funds," Zame said.
But under the proposed Therapeutic Products Bill - which will replace the dated 1981 Medicines Act - it will be illegal for patients like Zame to privately import medication via the mail.
"If this legislation goes through, those patients will not be able to receive those medicines. As a result - in some instances - those patients will die," Patient Voice Aotearoa chair Malcolm Mulholland said.
Patient Voice Aotearoa believes thousands of patients will be impacted by the Bill, which has passed its first reading.
Mulholland is concerned about a number of clauses including the broad definition of the term "advertisement".
He said it will make it illegal for patients to publically advertise unfunded treatments like creating a Givealittle page or speaking to the media.
"That is the means by which they raise awareness, by which politicians give Pharmac more funding," Mulholland said.
"It's just a form of censorship that I think most New Zealanders will find abhorrent."
Newshub put these concerns to Health Minister Dr Ayesha Verall on Wednesday but was told it would be inappropriate for her to comment as the case is in front of the Select Committee.
Those proceedings continued on Wednesday with the proposed Bill drawing criticism from a range of agencies.
"It is one of the worst examples that I have seen of legislation being rushed through," Auckland University law Professor Jane Kelsey said.
"We have sought much more clarity," Health Select Committee chair Dr Tracey McLellan said. "It's absolutely on our radar."
But patients hope it becomes a priority - because time is not on their side.
