Patient Voice Aotearoa’s Dr Malcolm Mulholland will today at 3.30 appear before the Health Select Committee to voice opposition to parts of the Therapeutic Products Bill on behalf of Kiwi patients.

“The Bill threatens to obstruct access to unfunded medicines by making it illegal for New Zealanders to import prescription medicines via post” says Dr Mulholland. “We are aware of countless Kiwis who have turned to importing medicines to save their lives. The Therapeutic Products Bill in its current form would be a death sentence for these patients.”

Patient Voice Aotearoa is also gravely concerned about the Bill creating a barrier to clinical trials, and making it illegal for patients, advocates, doctors, and media from publicly discussing the need to fund unfunded medicines.

Appearing with Patient Voice Aotearoa will be Lydia Pei-Pereira who has gastrointestinal stromal tumours (GIST) and is privately funding Qinlock. She will speak about how the proposed legislation could prevent them from accessing their life extending medications.

“I am struggling to understand why the Government would draft a Bill that could prematurely end the lives of terminally ill New Zealanders or make them criminals” says Dr Mulholland. “The Government needs to remedy a number of glaring issues with the Bill. Prime Minister Chris Hipkins needs to urgently get across this and make a leadership call. This is clearly an error. No one could possibly think that banning New Zealand patients from privately importing medicines to keep them alive is ethical.

So, what is being proposed?

Under the proposed bill, pharmaceutical companies are expected to pay a licence fee to Medsafe for patients to continue accessing an unfunded medicine either through their own pockets or through compassionate access schemes.

The Bill also threatens to make it illegal for patients to import medicines through the post – even with a prescription from their doctor or specialist. If this Bill passes, this would force vulnerable patients to travel overseas to procure the medicines they need to stay alive.

The Bill also proposes to transfer responsibility to approve clinical trials to Medsafe, an agency that takes twice as long to approve the registration of a medicine compared to its equivalents across the developed world.

Finally, the Bill proposes to curtail the advertisement of unfunded medicines, with the definition of an advertisement of an unfunded medicine being so wide that groups such as the Media Freedom Committee have urged caution.

“The Bill should be sufficiently clear not to create a chilling effect around news media coverage of issues relating to therapeutic products” states the Media Freedom Committee, which represents NZME, Stuff, RNZ, TVNZ, Newshub, The Spinoff, The Health Media and Newsroom.

The definition of ‘advertisement’ in the current Bill, could arguably include Givealittle pages and media coverage of unfunded medicines. If the definition of an advertisement is permitted to remain, this could greatly encroach on freedom of speech and amount to censorship. It should be noted that Pharmac, Medsafe, The Ministry of Health and the Government are exempt from this provision.

“Patients with a terminal disease have already contacted PVA to say that they are prepared to be taken to court by the Government to either receive a fine of up to $200,000 or to face a five-year jail sentence” says Dr Mulholland. It is bad enough that Pharmac doesn't fund the medicines that Kiwis need to stay alive. It beggars’ belief that the Government would propose additional barriers for patients to self-fund medicines or access them via compassionate schemes.”

We can only hope that good intentions were behind this Bill but lack of consultation, until now, has led to a Bill that doesn’t consider patient outcomes. Either way, questions need to be asked with urgency.

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