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DEAD LAST: Patient Voice Aotearoa Calls For Urgent Government Funding To Clear Pharmac’s Waiting List

The IQVIA ‘International Comparison of Modern Medicines’ Report, released today, which compares the public funding of modern medicines in 20 OECD countries, makes grim reading for New Zealanders who desperately need access to modern medicines.

Despite Patient Voice Aotearoa’s 100,000 strong Parliamentary petition delivered in May 2021 calling for an immediate doubling and then tripling of Pharmac’s budget to bring us in line with Australia, New Zealand yet again comes last, with the worst access to modern medicines out of 20 OECD countries.

Until Pharmac’s budget is significantly increased, New Zealand patients will sadly continue to be “dead last”. Claims by the Government that they have increased Pharmac’s budget by 25% is simply spin; over half of the increase was money transferred from the hospital pharmaceutical budget.

The Government must immediately increase the pharmaceutical budget so that New Zealanders can at least access the medicines sitting on Pharmac’s waiting list in order to improve, prolong and save lives.

“There are 74 medicines that Pharmac’s clinical experts have recommended for funding, sitting on a list, in some cases for years, with no action” says Patient Voice Aotearoa (PVA) Trustee and Spinal Muscular Atrophy (SMA) advocate Fiona Tolich.

“Today’s IQVIA Report shows that the average time from a treatment being registered in New Zealand to actually being funded by Pharmac is a painful 822 days.”

“With COVID medicines, funding has been achieved in record time, with arguably less clinical data than those on Pharmac’s waiting list,” says Tolich. “We understand the Government has allocated half a billion dollars to a ringfenced Pharmac fund for Covid medicines, while patients with rare disorders, cancers and chronic conditions deteriorate or die waiting for modern medicines.”

“Pharmac revealed in May 2021 that it would cost just $417 million to clear the list of 73 medicines it desperately wants to fund. Pharmac has since also added cystic fibrosis medicine Trikafta to the list” says Tolich.

“What does it say about how we treat our most vulnerable when the Government refuses to fund Pharmac to lift us from the bottom of the OECD year after year for access to modern medicines? We have children with conditions like SMA and cystic fibrosis who are painfully vulnerable to Covid because of a lack of access to modern medicines. There are two SMA treatments ranked with a high priority by Pharmac, and one for cystic fibrosis, all sitting on a list with no funding to clear them” says Tolich.

Brent Walker, who lives with SMA says, “We have been told time and time again that politicians cannot intervene in the funding of medicines, but they have with COVID. The Government won’t provide myself and other SMA patients with the best defense against the virus by funding either Spinraza or Risdiplam. Even more insulting is that they are prepared to fund drugs to end my life. I am in my twenties and have so much more life to live. I just wish they thought I was worth it.”

Patient Voice Aotearoa believes that Pharmac’s ‘Options for Investment’ medicines list must be cleared immediately, particularly due to the impact of Covid-19 on New Zealanders with underlying health conditions, and the delay to the Pharmac Review.

The interim Pharmac Review report was due to be released in August 2021 and the final report in December 2021. Patient Voice Aotearoa understands that the final report is now not due until February 2022.

Elisa Wijohn, who lives with advanced breast cancer and participated in the Pharmac Review process, says she is “gutted at the delay to the Pharmac review. We presented to the Review Panel in good faith. These people may have time to wait, but we don't.”

“The review was reluctantly agreed to as part of electioneering and then became a handy tool for the Government to deflect any Pharmac questions. Further delay certainly makes you think that this is not about wanting to find out how best to deliver pharmaceuticals to our nation.

“Pharmac's funding and processes continue to perpetuate gross inequity by making health, and life itself, more available to those who can afford to fund medications that are available as a standard in countless other OECD countries.”

Lisa Foster of Rare Disorders New Zealand (RDNZ) hopes that the IQVIA report will encourage Pharmac, the Ministry of Health and Government to fix New Zealand’s medicines access crisis. “Instead of fighting to be seen we hope our leaders will choose the option for co-creating solutions,” says Lisa.

“In other developed countries person's with rare disorders are viewed as a public health priority so why not here? We entrust our leaders as kaitiaki to care for our most vulnerable and yet there is no formal recognition or actions to offer clear pathways to care, medicine and support – why is that?”

Lisa Foster (RDNZ) and Fiona Tolich (PVA) were recently invited to present to the United Nations about the state of SMA treatment in New Zealand.

“Many in the international community reacted with shock that a country like New Zealand treats its most vulnerable so poorly” says Tolich. “But there is hope – our medicines crisis can be fixed, and the solution lies in the hands and hearts of Grant Robertson, Andrew Little and Jacinda Ardern. When we say we are a team of five million, we should mean it.”

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