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“Personally, I think New Zealand did an exceptional job of saving lives, but I believe this virus isn’t over yet – and putting our heads in the sand and pretending it is, just because we are bored of it, is going to be one of the stupidest things that human beings have ever done...”
In July 2023, Jenene Crossan, a dynamo in NZ’s business and IT landscape, was three years into coping with Long Covid, the invisible adversary that has redefined her life. She sat down with Listener health writer Nicky Pellegrino to talk about Long Covid Support Aotearoa, which had grown from a Facebook post to a fully-fledged patient-driven platform.
This week, Pellegrino again wrote about Covid and living with the virus which, far from ending in 2020, the year the Covid pandemic caused global chaos, is now into its fifth year. As her latest story The virus that came to stay points out, although waves of new variants keep coming, and hospitalisations and deaths remain high, most of us have stopped taking the sorts of precautions we once relied on.
Listener.co.nz went back to Jenene Crossan and Larisa Hockey, two of those interviewed for Pellegrino’s 2023 Long Covid: New research offers hope to those devastated by the virus, to find out from them how life has improved, or changed, since then.
Reflecting on the nine months since she was last interviewed for the Listener, Crossan, as her opening quote shows, is unequivocal about the longterm consequences of a virus that isn’t going away.
Studies estimate that between 4-14% of those who get Covid will go on to develop Long Covid – and it doesn’t matter how many times they’ve had the virus before, it remains “a throw of the dice”. There’s no predictable endpoint for Long Covid recovery and for some, like Crossan, it will trigger other autoimmune conditions.
While her initial fatigue and brain fog have passed, she has now been diagnosed with four autoimmune conditions. They include Hashimoto’s disease, which affects the Thyroid gland that makes hormones that control how the body uses energy, and Serrated polyposis syndrome (SPS), which means regular occurrences of polyps in the large intestine which, in turn, is linked to increased risk of colorectal cancer.
She says perhaps one of the most significant changes has been going from being a lone voice to one of a number now standing up and speaking out about Long Covid.
“There’s a team of us who do what we can, when we can,” says Crossan. “Earlier, we used to have people tell us that they had heard Long Covid was ‘a thing’, but increasingly we hear people saying they know someone who has it – a relative, a friend, a work colleague. That’s been a significant change in the last few months.
“I also feel like when government ministers are asked, they no longer say things like, ‘we’re keeping an eye on the data.’ Instead, they acknowledge it is debilitating and that they know it’s a problem. That’s a huge step forward, but what I would really like to see now is some action to respond to this because there’s still literally nothing.”
However, when it comes to a nationwide management plan for Long Covid, defined as symptoms that developed during or after Covid-19 infection, which continue for more than 12 weeks and that are not explained by any other condition, Crossan says the situation remains uncertain.
Management plan?
In March, the Public Health Communication Centre Aotearoa released a briefing paper that points out four years of observing “this evolving new virus” is not long enough to provide a full picture of Long Covid.
However, it stressed, its impacts are already substantial and measurable in individuals, sectors, and societies. The briefing made three urgent recommendations to the NZ government:
• Identity a proportionate response by conducting Long Covid risk assessment.
• Rapidly reduce infection and reinfection rates by ensuring public settings are safer to access.
• Expand Covid-19 eligibility and coverage (eg, to younger age groups) to benefit from the ability of vaccines to reduce the risk of Long Covid.
Crossan was one of the 14 researchers, clinicians and people with lived experience of Long Covid who wrote the briefing paper, participating as a University of Auckland researcher and a person with Long Covid.
The response to the paper has not left her feeling confident it will be acted on. When asked about its recommendation - essentially, that the government do more to help - Health Minister Shane Reti and Finance Minister Nicola Willis said there was already a Long Covid Expert Advisory Group. It turned out, though, the group was established in 2022 and disestablished that same year. Reti and Willis each said that the Ministry of Health had provided incorrect information; ministry officials apologised.
“And now we’ve got the government setting up groups to push people to go back to school and make sure that they’re not absent from school, but we’re not thinking about clean air in classrooms,” says Crossan, shaking her head.
Larisa Hockey, who also spoke with Pellegrino in July 2023, shares this concern, more so since the release of research in February. That research points out that children and young adults with a long-term health condition before they got Covid were “significantly more likely” to report new health symptoms after infection while other children were likely to experience ongoing symptoms.
These included coughs/colds/stomach bugs, concentration difficulties, fatigue, persistent cough, muscle aches, anxiety, tremor, balance problems, problems seeing, difficulty hearing, shortness of breath, difficulty breathing, chest pain or heart palpitations.
The report, Understanding the impact of vaccination on long-term health outcomes from Covid-19 in children and young adults, pushes for a national respiratory illness strategy, that includes “multiple components” such as good ventilation and air filtration in schools and “a strong emphasis on staying home when sick”.
It went onto say: “Upskilling of educators about post Covid-19 symptoms in children is also important, especially the impact these symptoms are having on children’s ability to attend school and other activities. Support to ensure students are continuing to learn is essential.”
Family impact
Covid struck the Hockey family in 2020, changing Hockey and her three active teenagers from people who enjoyed hiking, mountain biking and riding horses over their 300ha property near Gisborne, to being largely housebound. Unable to go to school or work, they struggled to leave the house, get out of a car, or walk more than a few metres.
Hockey says improvements are slow, but her son, Daniel, 20, is now studying engineering at the University of Canterbury – doing fewer papers so taking longer to complete his degree – and her daughters, Ashley, 18, and Ella-Rose, 16, are doing some study at home. Elle-Rose tried returning, part time, to school but has been unable to do more than one class a fortnight.
Hockey and her daughters remain “very limited” in what they can do, but she says accepting the situation, resting, and pacing activities rather than trying to push through, and keeping calm have been helpful.
“I’ve got a greater appreciation for energy – and what you can do with it. How amazing it will be to go for a walk on the beach, so a renewed appreciated for the little things of life,” she says. “I’m just really proud of my kids and the way they’ve handled this. Being able to process and deal with tough things will set them up for life.
“I can do some part-time work at home – just five hours a week – and help out with Long Covid Support Aotearoa, which gives me a sense of purpose. I’m very thankful that my husband didn’t get sick. He’s been amazing, but it hasn’t been easy for him to have to carry on working and doing everything around the house. We’re incredibly lucky to have had supportive friends and a church community that rallied around.”
But she worries about the people who don’t have any support because friends and family are unable to help out or because they’re suspicious about whether Long Covid – indeed, Covid itself – is real. Crossan, who doesn’t come across as easily shockable, saw this first hand when Long Covid Support Aotearoa ran a Facebook promotion asking respondents to answer a handful of simple questions.
Help needed
Some 6500 people took part, answering questions about whether their health had been better or worse since the pandemic (more than half said worse).
“But what happened is that we had to deal with all of the trolls. There were 8500 accounts that I blocked; all of these people who had not just an opinion but dangerous and wilful viewpoints, with added violence,” says Crossan.
Crossan and Hockey have both been questioned about whether their ongoing symptoms are from “vaccine injuries”, but both point out they were not vaccinated when they caught Covid.
“I wasn’t vaccinated until 2022,” says Crossan, “but first caught Covid in 2020. If anything, the vaccine helped some of my Long Covid symptoms improve. I’m not here to invalidate people who may well have had some sort of negative experience, but often they don’t have data to back it up.”
Treating those with Long Covid, and the additional conditions that develop because of it, now adds $377 million per annum to our health bills, says Crossan. What’s more, those with Long Covid will visit their GP, on average, 7.8 times a year. The average Kiwi goes 2.4 times.
“We hear, anecdotally, from our group, that many people have to go to their GPs to get their medical certificates signed off on a very regular basis. So, how much time is being utilised right now where people are being pushed to prove that they’re sick and they’re struggling to be heard?
“The Long Covid patients in New Zealand we’ve been working with on the registry have a lower quality of life score than those with severe cancer; the really simple reason for that is there’s no pathways or little to support someone.
“If you’re diagnosed with cancer, it might have a higher mortality rate, but you will learn there’s still a lot that can be done, that there is a well-defined pathway for your treatment and care, but those with Long Covid are lucky if they can find a GP willing to diagnose them…”
Both Hockey and Crossan have heartbreaking stories about the damage Long Covid has caused: parents unable to care for children, divorces, the loss of homes and income, careers abandoned. Hockey wants more doctors to upskill on post-viral illnesses.
“We need New Zealand to partner with other countries to prioritise research leading to treatments or this will be a very long haul for many, including far too many children,” says Hockey.
Not surprisingly, Crossan says her outlook on life has changed and whereas once she was surrounded by “purely capitalist-oriented people”, she’s now working alongside clinicians and researchers.
“And they’ve got to be some of the biggest hearted, empathetic, interesting, smart people I’ve ever met. What a difference it is working alongside them.”
She’s connected with her Māori whakapapa for the first time and has a new awareness of what she describes as privilege and ableism.
“I think when people hear that they think it’s a dig at them that, but it’s not. It’s just that there are all sorts of privilege. It’s a kind of privilege that gives me the personality that enables me to stand up and have this conversation. I’ve got a level of confidence that allows me to stand up and be heard and because of that, I want to use it.”
To find out more about Long Covid Support Aotearoa, go here.