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Trikafta Parliamentary Petition Delivered Today

Today, the New Zealand Cystic Fibrosis community are calling upon the Government and Pharmac to fund a wonder drug, Trikafta. We, Patient Voice Aotearoa, stand in solidarity with them. For many people with cystic fibrosis, the drug will make their condition a thing of the past, enabling them to live a relatively normal and long life. States Chair of Patient Voice Aotearoa, Dr Malcolm Mulholland “However, without Pharmac receiving a significant increase in funds in the coming budget, cystic fibrosis patients and their whānau will be left in limbo, with no timeframe by which they might expect the medicine to be funded. Sadly, some cystic fibrosis patients may die waiting, a story all too familiar from others who wait for Pharmac to fund other medicines.”

“Last year when the Minister of Health Andrew Little was questioned about the Government providing Pharmac with funding for Trikafta, he stated “Pharmac’s role is frankly to cut through their [Vertex’s] bullshit and actually negotiate prices that are realistic.” What the Minister neglected to inform the public is that some $2.8 billion dollars’ worth of shares in biopharmaceutical companies are held in the investment portfolios of the NZ Superfund (also known as ‘The Cullen Fund’ which was set up by the late Sir Michael Cullen when he was Minister of Finance) and ACC. The biopharmaceuticals sector is one of the largest categories of industry shares that the Cullen Fund invests in. And more specifically, the Government, through both the portfolios holds $63 million dollars’ worth of shares in Vertex. This is the very company that produces Trikafta and the same company that the Minister has asked Pharmac to cut through “their bullshit.” If the Minister wishes to take a principled stand against biopharmaceutical companies, he and his Cabinet colleagues should instruct the Chair of NZ Superfund, Catherine Drayton, and the Chair of ACC, Steve Maharey (who also happens to be the Chair of Pharmac), to withdraw their shareholdings in biopharmaceutical companies” says Mulholland.

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“What the Minister also neglected to state is that New Zealand has a medicine funding crisis. Since October 2018, numerous petitions that collectively hold over 350,000 signatures, have been submitted to Parliament for specific medicines to be funded. Prior to Trikafta being added to Pharmac’s Options for Investment (OFI) list, some 70 plus medicines needed to be funded at a cost of over $400 million. Knowing that the OFI list is so long, what hope do those with cystic fibrosis have in getting Trikafta funded in a timely manner? The first step in addressing a crisis (as seen with our Cost-of-Living Crisis) is admitting that one exists.”

“If you also factor in that there are another 280 applications slowly grinding their way through Pharmac’s notoriously slow process, and that even if we were able to fund all of those medicines, we still wouldn’t be funding all the medicines in the world, it clearly demonstrates that Pharmac is in desperate need of a massive injection of funds. Not only that but attempts made by the Minister that claim Pharmac’s budget has been increased 25% since Labour came into power, doesn’t bear closer scrutiny. Over half of that amount ($130 million dollars per year) was already used to purchase medicines in the hospitals by the DHBs, and that was simply shifted over to be under Pharmac’s responsibility.”

“The slow funding of medicines stands in stark contrast to the open cheque book policy and fast movement the Government has introduced to purchase medicines needed to treat Covid-19. Pharmac hasn't funded just one medicine but a total of six for Covid-19. Adding insult to injury for patients awaiting a drug to be funded in New Zealand, these medicines have been funded in record time, the most time being taken being seven months and the quickest, just one month. Thus far, it is estimated around $300 million dollars has been spent or set aside to secure Covid-19 medicines to treat patients in need.”

Patient Voice Aotearoa is calling upon the Government to stop with its hypocrisy regarding medicine funding in New Zealand. More specifically:

1. Don’t criticise the cost of a medicine produced by a biopharmaceutical company, unless you declare you are also a shareholder in that company.

2. Admit New Zealand has a medicine funding crisis and don’t spin Pharmac’s budget.

3. Implement the same processes and speed used to obtain medicines and the vaccines to treat Covid-19.

4. Rather than place more value in a life affected by Covid-19, place the same value in a life for those with a chronic illness, cancer, or a rare disorder.

States Mulholland, “New Zealand patients deserve honesty rather than hypocrisy when it comes to questions about life saving medicines like Trikafta and the over 70 medicines sitting on Pharmac’s waiting list. Without a significant funding increase to Pharmac in Budget 2022, patients will continue to suffer in their hour of greatest need.”

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