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Image: Getty Images; additional design The Spinoff

OPINIONScienceOctober 30, 2024

The impact of long Covid will be huge. So why is New Zealand doing nothing about it?

Guest writer
five silhouetted purple heads and shoulders with green clouds around them, against an orange "static" background
Image: Getty Images; additional design The Spinoff

The cost is set to go far beyond human suffering, yet almost five years into the pandemic, not only are there still no treatments for long Covid, there aren’t even any diagnostic tools – and we don’t seem overly interested in finding them.

The jig is up. People are catching on that “mild” Covid-19 may not be so mild, and that the mysterious lingering symptoms they’ve experienced after catching the virus, such as fatigue and brain fog, may just be connected. For others, this will be the first time that they put two and two together. I hate to be the bearer of bad news, but strap in for what comes next.

Recently, RNZ ran a piece outlining the estimated $2bn per year economic cost of long Covid in New Zealand and signalling that further research would be needed to determine a more precise figure. The average reader would assume that this research is under way or has at least been planned and funded. Human suffering aside, such a hit to productivity would surely raise alarm bells across the political spectrum!

I say this solemnly: yeah… nah.

Almost five years into the pandemic, not only are there still no treatments for long Covid, there also aren’t even any diagnostic tools – and we don’t seem overly interested in finding them.

At present, a long Covid diagnosis relies on a patient finding a doctor with up-to-date knowledge, who will believe their symptoms, and who will spend time investigating further to rule out other possibilities. This mythical trifecta is out of reach for most people, particularly women, who are affected by immune conditions at far higher rates, but have their symptoms written off as hysteria; and Māori and Pasifika, who face barriers to healthcare, and have their symptoms written off as laziness. Obtaining accurate data on prevalence under these circumstances is simply impossible.

In this way, and several others, long Covid mirrors ME/CFS (myalgic encephalomyelitis), a brutally debilitating biophysical condition, though the oft misused term “chronic fatigue” doesn’t quite convey that. Around half of long Covid sufferers meet the criteria for ME/CFS, which by the World Health Organization’s scale has a worse disease burden than HIV/Aids, multiple sclerosis (MS), and many forms of cancer. But again, there are no treatments.

I suffer from ME/CFS myself. My illness predates Covid-19 and came on after an infection with cytomegalovirus (CMV). I went from a fit and active young man to debilitatingly sick and fatigued, with several unexplained symptoms.

Pre-pandemic there was estimated to be more than 25,000 people in New Zealand suffering from ME/CFS, and only one specialist in the country, working one day a week, who has since retired (well earned, bless her). For years I had been praying for any sort of diagnosis, even if it was bad, so that I could get on the path to recovery. I got the diagnosis – but for a disease with no path to recovery.

As the pandemic unfolded, patients and advocates in the ME/CFS community warned that a tsunami of disability was approaching. They were of course ignored, as they have been for decades, and are now joined by masses of long Covid sufferers facing the reality that the medical profession has no answers for them, except perhaps euthanasia.

Image: Tina Tiller

Frustrated with my lack of options, I connected with cellular immunologist Dr Anna Brooks, who had become a leading expert on long Covid, so I assumed that her biomedical research would be well supported. Alas, she detailed the uphill grind that it’s been to gain traction compared to other countries, and that generous donations, usually from patients themselves, had been the driving force of funding.

Together we founded DysImmune Research Aotearoa, with the goal of developing diagnostic tools leading to treatment for post-viral illnesses like long Covid and ME/CFS. In layman’s terms, we collect blood samples, analyse differences in cells, and put together an immune profile. My priority is ensuring that Māori and Pasifika patients and researchers are at the table and taking action into our own hands.

We’ve made a small start, and we have some incredible collaborations lined up, with far-reaching implications for community health. We’re in the process of seeking partnerships to take things forward. The expertise exists, it’s here in New Zealand. Still, the barrier to progress across the research space is the urgency for resourcing. It is dire to say the least.

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    Without some long-term project certainty, it’s difficult to pull the necessary teams together. While study after study illuminates more horrifying long-term effects of Covid infections, and prevention has been completely abandoned, research and development for treatments for long Covid is tanking. The private sector is at the whim of the quarterly financial report, and with no guaranteed short-term profit in treating us, it has very little incentive to take the risk.

    So, barring some philanthropic miracle, only government can fill this gap. Yet where Australia had set aside A$50m specifically for long Covid research, and the US Senate considers a billion-dollar long Covid “moonshot” bill, New Zealand has allocated nothing. We’re fast asleep at the wheel. No other country can determine how many of our people are impacted by post-viral illnesses. No other country can address our specific needs.

    Since this government is focused on ambition, productivity and fast-tracking, I assume they’d want to be world leaders in research, warp-speed some projects, and get long Covid sufferers back into work, no? This is what we are calling for. Not surveys. Not “talk” therapy and positive thinking. Biomedical research.

    Put the money down and commit to this. Seize this opportunity to right decades of neglect. There are tens of thousands of us fighting for our lives, and millions more around the world. You think it won’t be you, then after your next inevitable Covid-19 reinfection, it is, and you’re left to wonder why nobody stepped up.

    Government, iwi and whānau ora groups, health organisations, philanthropists – reach out. Let’s work.

    Rohan Botica (Te Ātihaunui-a-Pāpārangi, Ngāti Tūwharetoa) is a lived-experience researcher and co-founder of DysImmune Research Aotearoa.

    Keep going!
    A drawing of caulerpa brachypus superimposed on a beige and brown background.
    Design: Liam Rātana

    ĀteaOctober 23, 2024

    There’s a silent killer threatening the mauri of our moana

    Ātea editor
    A drawing of caulerpa brachypus superimposed on a beige and brown background.
    Design: Liam Rātana

    A new documentary examines the impact the invasive algae caulerpa is having on a community that depends on kaimoana.

    In 2021, while the country was distracted with the final Covid lockdowns and what Te Pāti Māori co-leader Rawiri Waititi was wearing around his neck, a silent killer was taking over our waters. It wasn’t a foreign navy or microplastics, but a type of invasive algae suffocating everything in its path.

    Described as the “cancer of the sea” and “a national emergency”, exotic caulerpa is already drastically changing New Zealand’s seafloor habitat, and it appears the problem is only going to get worse. Officials don’t know exactly where or when the toxic, sticky green algae first entered New Zealand waters, but it is believed to have arrived on a vessel travelling from Australia or the Pacific. 

    It was initially discovered on the west coast of Aotea in the outer Hauraki Gulf in July 2021, but the Ministry for Primary Industries says the amount of caulerpa found in various locations suggests it had already been here for several years. “It is chaos… No one’s got a handle on it. No one,” says Aotea kaumātua Rodney Ngawaka (Ngāti Rehua – Ngāti Wai ki Aotea) in Mauri Moana, a new documentary focusing on the impact caulerpa is having on Aotea.

    In the three years since it was first found, caulerpa has covered the seafloor along the entire western coast of Aotea and is now beginning to spread to the eastern coast. It has also been found as far south as Ahuahu, near the Coromandel Peninsula, and as far north as Pēwhairangi. According to Chris Ollivier, co-chair of the Aotea Caulerpa Response Team, large infestations of caulerpa overseas have led to 50% loss of amenity, or use of the area, and 50% loss of the fish life in those areas.

    “Our identity of who we are as Ngāti Rehua – Ngāti Wai ki Aotea people, our identity will change because of [the loss of] our food source,” says Ngawaka.

    Nathaniel Howe (Ngāti Wai, Te Whānau-ā-Apanui, Ngāti Porou, Ngāi Tahu, Ngāpuhi) and Stevie Davis-Tana (Ngāpuhi, Ngāti Porou ki Harataunga, Te Arawa, Ngāti Raukawa ki te Tonga) are the director and producer of Mauri Moana. The duo were documenting historical kōrero for local iwi and looking at contemporary issues when they realised there was a lack of awareness about the impact caulerpa was having on the people who are “very connected to the taiao and live a lifestyle that requires them to be connected intimately with the moana”, Howe says.

    Underwater scene showcasing a dense field of caulerpa brachypus on the ocean floor. The blue-green water is clear, allowing a view of the aquatic plants swaying gently with the current.
    Caulerpa destroys everything in its path, creating barrens under the ocean (Photo: Supplied)

    While there is great awareness and politicisation around issues like deep sea mining, Howe says there needs to be an increased focus on caulerpa, which is already having a huge impact on the ocean environment, but there’s been “a lack of response over the last three years to tackle the problem”.

    Locals in Aotea have been enforcing rāhui, or controlled areas, and carrying out their own surveillance and removal efforts, but the problem is larger than any small-scale community initiative can tackle alone. Since caulerpa spreads via ocean currents, removal in one place can be undone after a storm or strong swell. “Because of how far it’s spread and how quickly it’s spread, it requires critical mass,” Howe says.

    In August, the minister for biosecurity Andrew Hoggard announced the government would be adding an extra $10m in funding to develop tools and techniques to contain and remove exotic caulerpa, bringing the total amount of government funding to $15m in the three years since it was first discovered here.

    ‘He mea tautoko nā ngā mema atawhai. Supported by our generous members.’
    Liam Rātana
    — Ātea editor

    Last month, the Northland Regional Council said its world-first caulpera eradication trials were removing tonnes of caulerpa from the seafloor every day in Pēwhairangi.

    Despite the positive news, there are fears that progress is too slow and not happening at a large enough scale to effectively tackle the issue. According to the Northland Regional Council, $100 million is needed to fight the invasive species nationwide.

    A man with long, gray hair and a beard is looking towards the camera. The background is a blurred outdoor setting with muted colours, indicating a beach or open area. The lighting suggests it might be late afternoon.
    Rodney Ngawaka fears caulerpa will change his people’s way of life forever. (Photo: Supplied)

    “The Pākehā perspective looks at the economic impact at a macro level. The Māori perspective looks at the whakapapa impact – both are equally valuable in terms of being able to quantify what the issue is,” says Howe. “What we need to do is accelerate the awareness, so that everyone understands and is aware of what is at stake… When you’re dealing with the bureaucracy that we’re dealing with, the government is really slow to put enough resources into tackling the problem.”

    According to Izzy Fordham, chair of the Aotea/Great Barrier local board, a key reason the issue has seemingly flown under the radar for so long is that caulerpa exists under the water, where most people can’t see the impact it is having on the environment. In other words, it is literally out of sight, out of mind.

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    “Because it is underwater and you can’t see it, you don’t really resonate with how serious it is… I don’t think the government truly understands what is at stake here,” Fordham says.

    While bureaucracy is being blamed for an apparent lack of adequate action and resourcing from the government, caulerpa continues to destroy vital sources of kaimoana generations of New Zealanders have depended on. Just how bad the problem will get remains to be seen. But for Howe, the solution needs to be now. “I’d hate to have to write an apology letter to our kids and to our grandkids, because at this time, this point right here, we said nothing and did nothing about it.”

    This is Public Interest Journalism funded by NZ On Air.