Those with cancer and rare medical conditions have asked the Prime Minister to relax Pharmac's rules on drug funding to reduce their heightened chance of death during the coronavirus outbreak, and to relieve pressures on public hospitals.
Tegan Hollier, 26, is one of those to be directly affected.
She discovered she had bowel cancer on January 15, had half her bowel removed on February 7 and is starting chemotherapy on April 1.
"My world is falling apart and to now have the rest of the world falling apart is a pretty scary thing.
"The last 74 days of my life have been madness."
Hollier's year ahead was frightening enough. The discovery of cancer revealed Lynch Syndrome, meaning she has a genetic predisposition to bowel cancer. Even if beaten this time, she has a life sentence of careful health management.
Coronavirus has turned that frightening year into a nightmare, facing the prospect of managing her cancer with a lowered immune system during the outbreak with potentially jammed hospitals and a continued lack of funding for potentially life-saving drugs.
Today, more than 30 advocacy groups and health-related charities have joined to call on the Prime Minister to increase access to drugs by telling Pharmac - the Government's drug-buying agency - to urgently start paying for medication it had previously refused to cover.
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Advertise with NZME.In an open letter to be published in Wednesday's NZ Herald, Patient Voice Aotearoa chairman Malcolm Mulholland told Jacinda Ardern: "Those with compromised-immune systems are extremely defenceless against Covid-19 and our country leads the world in funding the least amount of immunotherapy drugs.
"Also, the burden on the healthcare system would be alleviated if we funded more medications."
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Pharmac has already shifted in response to the coronavirus outbreak but largely by removing red tape to access drug pathways rather than opening the door on new treatments.
For Hollier, the drug in question is Keytruda. It is available in New Zealand but only to those with melanoma. It works with other cancers yet Hollier can't get it without paying for it, so she's looking at a shot at life she doesn't currently have in the public health system.
"In the eyes of the public health system, I'm terminal and they can no longer help me."
Without Keytruda, she faces being locked into rounds of chemotherapy, possible further surgeries, hospital visits and eventually death at a young age. Hollier is aware that doing so would mean she was trying to work in with a public health system that is predicted to be buckling - if not breaking - under the weight of Covid-19 admissions.
Already, coronavirus has led her to step away from the public system and use carefully saved funds to be treated privately. Raising more money is a difficult prospect - Givealittle was the go-to service for those trying to raise money for medical care but Hollier says the uncertainty caused by coronavirus appears to have hit the website's ability to harvest public donations.
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"There's the potential we will be left behind," she says of her situation, and of others with cancer and rare disorders. "It just gets scarier and scarier with each day that goes by.
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Advertise with NZME.Cancer survivor Steve Wilson advocates for those with Lynch Syndrome, a condition which left him especially vulnerable, and says his experience shows cancer sufferers could travel a different path through the coronavirus crisis.
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Wilson - like Hollier - was diagnosed with Stage 4 bowel cancer. When he started on Keytruda, he watched an 84cm tumour shrink to the size of a fingernail - small enough for a surgeon to tackle.
Funding Keytruda would reduce the burden on the public health system, he says. "It just makes sense to get on and treat the poor girl."
The issue of Pharmac funding - a long-vexed political football - extends beyond cancer treatments to other medications for rare or complex disorders not available publicly in New Zealand.
Fiona Tolich advocates for those, such as herself, with spinal muscular atrophy. Her current focus is on the 30-35 children in New Zealand with the condition who, she says, have a strong case to access the drug Spinraza.
It's a drug available in dozens of countries, but not here. A Pharmac subcommittee found it was medically beneficial in November and it is currently sitting before another committee with a focus on the financial benefit.
Spinal muscular atrophy leads to nerve degeneration that can affect, among other parts of the body, the lungs. It makes vulnerable the part of the body that would face sustained attack by Covid-19.
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"Every winter with just the common cold going around, these kids wind up in ICUs with collapsed lungs.
"If they were to get Covid-19, it would honestly be a death sentence."
Spinraza is administered at a hospital by lumbar puncture - injected into the spine - and is only done at Starship in Auckland. It's a one-day treatment under local anaesthetic and has shown such positive effects in children with spinal muscular atrophy that some of the most seriously affected have even walked after the drug.
In terms of lung vulnerability, Tolich said the drug reduced the chance of nerve damage while providing other benefits.
Were the drug to be provided free, it could relieve pressure on hospitals over the year ahead. She is concerned failing to do so, and leaving vulnerable patients to find their own way in the potential crisis ahead, is effectively carrying out an early triage to work out who dies.
"Just fund the damned thing and get it started."
Mulholland, whose wife Wiki had just undergone chemotherapy for breast cancer ahead of lockdown, said funding drugs currently out of reach would "give a person a fighting chance if they're unlucky enough to contract Covid-19."
"We already had a medicine funding crisis but it's been amplified in the Covid-19 environment. It always comes back to the lack of money."
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The $500 million immediately released by the Government for the health system, and the extraordinary spending that came with it, has Mulholland asking why spending couldn't be extended to cover the particularly vulnerable. He estimated $200m would cover the cost of the 100 drugs currently on Pharmac's waiting list.
He said the case of Tama, aged 3, who had spinal muscular atrophy, showed the awful plight of parents.
His mother Lisa told Mulholland: "If my son contracts Covid-19, he dies. If I stay in New Zealand, he dies. If I rely on Givealittle, he dies. I have nowhere to turn to save the life of my son".
Mulholland: "I'm not being too dramatic. I've no other way of couching it. It's the cold, hard reality and it's a shit reality. That's the reality people are confronted with."
Pharmac's director of operation Lisa Williams said the drug-buying agency had received fresh requests for funding new treatments with the advent of Covid-19. She said its staff, with clinical specialist advice, was currently assessing what was appropriate or possible.
She said organisations representing patients should make fresh contact with Pharmac to discuss concerns or requests.
Williams said the budget for medicines had not been increased but Pharmac was talking to the Ministry of Health about extra costs likely to be incurred during the outbreak.
"Pharmac will continue making the best choices we can, expanding available treatments for all New Zealanders based on a robust, evidence-based approach."
Health minister David Clark said decisions on buying drugs sat with Pharmac and it was respected for the "independence and impartiality" of its work.
"It is not for us as politicians to second guess the experts at Pharmac about which drugs it purchases."
• Covid19.govt.nz: The Government's official Covid-19 advisory website
