Most of us have shifted our focus away from the acute phase of the COVID-19 pandemic – it’s no longer talked about as widely or as frequently – ultimately, the general mood is that COVID is a thing of the past. However, a growing health crisis lingers in its aftermath: Long COVID, a complex and debilitating condition, continues to affect thousands of New Zealanders. Despite mounting evidence of its profound impact on affected individuals, New Zealand’s response remains underdeveloped, leaving many sufferers without adequate support or treatment pathways.
The Prevalence and Impact of Long COVID in New Zealand
Long COVID, also known as post-acute sequelae of SARS-CoV-2 (PASC), refers to the persistence of symptoms long after the initial COVID-19 infection has cleared. While estimates vary, studies suggest that approximately 10% of those infected with COVID-19 develop Long COVID symptoms that persist beyond the acute illness. In New Zealand, research indicates that up to 1 in 5 people with COVID-19 experience symptoms lasting more than three months. This equates to thousands of New Zealanders dealing with debilitating fatigue, cognitive dysfunction, respiratory issues, and chronic pain months or even years after infection.
The impacts can be life-changing. Patients report severe difficulties in maintaining their work lives, with many forced to reduce hours or leave their jobs altogether due to the crippling nature of their symptoms. One New Zealand sufferer, Renee, who was once an active member of the Palmerston North City Council, described her experience as living on the couch for a year because she could not walk to the toilet. Another, a former marathon runner, can no longer work or care for her ageing parents, a heartbreaking loss of independence and identity.
Beyond the physical symptoms, the social and emotional toll of Long COVID is significant. People struggling with long-term symptoms can feel isolated, their relationships strained as they battle with an invisible and misunderstood illness. Many Long COVID patients also find themselves unable to engage in hobbies or leisure activities, further exacerbating feelings of frustration and loss. As one patient, Angela, put it: “My world has shrunk. I can no longer do the things that brought joy to my life.”
A Healthcare System Unprepared for the Long COVID Wave
New Zealand’s healthcare system is still catching up to the realities of Long COVID, and many patients find themselves facing a confusing and inconsistent support system. One of the most common complaints from patients is that their symptoms are not taken seriously by healthcare providers. Recent media reports claim that many sufferers are misdiagnosed or not diagnosed at all. Marc Daalder, a senior political reporter for Newsroom, highlighted this issue, saying, “You’d think that this would be a bigger issue, that people would talk about it more, in government and outside, but there’s such a cultural kind of wanting to forget power and effect in place, that I think that contributes to just not wanting to acknowledge that it’s real.”
Currently, New Zealand lacks formalised Long COVID clinics or standardised care pathways, leaving general practitioners (GPs) to act as de facto case managers for these patients. While some GPs have become well-informed about Long COVID and take a lateral approach to care, others remain dismissive, creating a lottery system for patients seeking help. This inconsistency in care is compounded by the lack of specialised rehabilitation programs, with patients often waiting months to see specialists or paying out-of-pocket for private services.
The financial burden on Long COVID patients is particularly severe. With reduced or no income due to their inability to work, many are forced to rely on welfare benefits or disability allowances.
The Voices of Long COVID Sufferers
The personal stories of New Zealanders with Long COVID paint a grim picture of the struggles faced by those living with the condition. Ashleigh, a 28-year-old who was once saving to travel, now finds herself housebound and often bedbound, unable to walk more than a few steps. “My mum has had to take care of me a lot this year, and I feel bad for her experience as well,” she said last year.
Michael, a 32-year-old former Crown prosecutor, shared his story last year of been disabled for over 18 months and described his mental health and relationships as deeply damaged. “It’s probably the worst thing that’s ever happened to me,” he reflected.
For many, the hardest part of living with Long COVID is the loss of their former selves. Filipo, once a Crown Entity executive and avid gardener, now uses a walking stick or scooter to get around and requires oxygen therapy at work. “Long COVID has taken a lot from me,” he laments.
Angela, a mother of three, once a fit and active dentist, now struggles to stand for more than 15 minutes and requires a mobility scooter to navigate her day-to-day life. “I miss performing with my musician friends,” she says. “My old self is still inside but not always functioning.”
Limited Support Systems
In the absence of a robust healthcare response, many Long COVID patients have turned to online communities for support. Platforms like Long COVID Support Aotearoa provide peer support, practical advice, and a sense of belonging for those struggling with the condition. If you are suffering from Long COVID and are seeking support, you can visit their website here: longcovidsupport.co.nz
Private rehabilitation services like ABI Rehabilitation have also stepped in to fill the gaps, offering specialised support for Long COVID patients. However, these services are often costly and inaccessible to many who are already facing financial hardship due to their inability to work. Multidisciplinary support from physiotherapists, occupational therapists, and psychologists is available, but accessibility remains limited, and waiting times are long.
Calls for Research, Prevention, and Expanded Healthcare Access
Despite the challenges, there is hope for the future. Research efforts in New Zealand are beginning to focus on Long COVID, with initiatives like the Long COVID Registry collecting data on the clinical outcomes, quality of life, and economic impacts of the condition. Paula Lorgelly, a professor of Health Economics at the University of Auckland and the registry’s principal investigator, has emphasised the importance of tracking these outcomes over time to understand the full impact of Long COVID on the population.
Experts are also calling for preventive measures, including expanded COVID-19 vaccination eligibility and better public health interventions to reduce infection and reinfection rates. A March report from The Briefing urged the New Zealand government to conduct a comprehensive Long COVID risk assessment and implement immediate public health measures to make public spaces safer. The authors stressed the need for a multisectoral response to address the long-term health, economic, and social impacts of Long COVID, warning that without intervention, the prevalence of the condition is likely to increase.
Conclusion
Thousands of New Zealanders affected by Long COVID, and the need for a coordinated and comprehensive response is more pressing than ever. The voices of those living with Long COVID highlight the devastating impact the condition can have on individuals, families, and communities. Yet, despite growing recognition of the issue, much more needs to be done to support patients, reduce new cases, and address the long-term consequences of the pandemic.