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Photo: Getty Images/Tina Tiller
Photo: Getty Images/Tina Tiller

SocietyApril 29, 2022

I’ve been a long Covid advocate for two years. Here’s what people should know

Photo: Getty Images/Tina Tiller
Photo: Getty Images/Tina Tiller

Freya Sawbridge was infected with Covid-19 in March 2020. Eighteen months later she still was suffering symptoms. Like other so-called long-haulers, she worries that too few of us understand the long term risks of contracting even a mild case of Covid-19.

I call George as he sits outside a psychologist’s office. The 29-year-old has been off work for four months since his “mild” Covid infection, and his disability benefits are now running out. “The irony of this whole thing,” he says, “is that I run a boutique health club. Now I’m incapacitated”. He doesn’t know when his symptoms will end or how he will pay next month’s rent.

George’s story is not atypical. The prevalence of long Covid among those who contract Covid-19 ranges between 5 and 40% of cases, but most studies pin it between 5 and 10%. Long Covid is a term coined by patients at the beginning of the pandemic when it became clear many people’s symptoms were not ending (and often worsening) after the acute infection ended. The effects are wide-ranging and can generate over 200 symptoms; fevers, dizziness, numbing, fatigue, breathing troubles, seizures and arrythmia to name a few. Ever known a cold to cause these issues months and years post-infection? Neither have I.

The severity of the illness stretches from those who experience symptoms but can still function and live a semi-normal life to those who are completely bed bound. Either way, it is on track to become the biggest disabling event in modern history. Two million people have dealt with it in Britain since the start of the pandemic and an estimated 20 million are currently living with it in the US.

A difference from the beginning of the pandemic is that now we are armed with vaccines, but they only reduce the likelihood of long Covid by about 50%. However, the transmissibility of omicron means the number of people developing the illness is increasing, not decreasing. As Danny Altmann, professor of immunology at Imperial College London, says in The Guardian, “each 3.5 million cases becomes another 175,000 people with long Covid”.

A common misconception is that only those with severe illnesses go on to develop long Covid. In reality, the opposite is true. Most of the people I spoke to had had a mild initial case and some were even asymptomatic before developing long Covid. This is why the “omicron is mild” narrative is so misleading, because people think they will be fine just because they didn’t end up in hospital.

Even the mildest positive result for Covid-19 poses the risk of long-term symptoms (Photo: Getty Images)

Camille wasn’t worried when she caught Covid. She was an energetic 27-year-old, and her symptoms were so manageable that she continued her PhD study through her infection. Her symptoms abated after five days and she was relieved to have “got it over with”. One month later, something felt off. Her heart would soar to 150 just from standing up even though she was an avid runner. Her memory began lapsing and she was forgetting words mid-conversation. Then she began passing out. Her sister rushed her to the emergency department but she was told nothing could be done to help. That was 16 months ago and she is still sick. She has had to defer her PhD.

Like many other invisible disabilities, most people afflicted with long Covid don’t speak up for fear of judgement and concern over employment discrimination. Marie tried to confide in her family, but she was disbelieved. “They thought I was undergoing some psychiatric breakdown,” she tells me. You would have thought that a global pandemic would increase our empathy and make us more unified despite our individual differences. Instead, the intense politicisation of the virus has created a cycle of marginalisation. The “me and my friends were OK after Covid so why weren’t you” rhetoric has taken hold, when the logical conclusion should be “viruses affect everyone differently”.

The risk of organ damage with Covid-19 is well documented, but few people realise that damage can occur even in those who consider themselves fully recovered from infection. For example, recent findings published in the British Medical Journal revealed a 33-fold increase in the risk of blood clots and a surge in other post-Covid complications such as heart problems and strokes. Another major study comparing brain scans of people before and after a Covid infection showed greater overall brain shrinkage and damage than in an uninfected control group, regardless of severity or age.

Reinfections is another unforeseen complication of the pandemic. Many had hoped herd immunity would be achieved through a combination of exposure and vaccines but repeat infections are becoming increasingly common. You could escape long Covid after your first or even second infection, but what about the third one?

This pandemic is now two years old and the science is well established: long Covid is a real, multi-organ disease that affects far too many people to be brushed off as an unfortunate and rare side effect of the pandemic. Yet governments, medical institutions and the media are not adequately warning people of the risk. This is most likely because being honest about the prevalence of long Covid undermines a strategy of dropping all precautions and “learning to live” with the virus. The German health minister, Karl Lauterbach, is one of the few politicians consistently speaking up. In a recent tweet he warned “In a few years we will see [the] full extend of long Covid… even if the course is mild, there is a risk that life will change. Nobody likes to hear it, but that’s the way it is”.

No one wants lockdowns to return but it is imperative that we change our cavalier and arrogant thinking surrounding the pandemic and the risk of long Covid. Reducing mitigations so drastically when case numbers continue to soar will only drag more people into the world of disability. We must be transparent about the price we are paying for our freedom.

Freya Sawbridge is the New Zealand delegate to the World Health Organisation for long Covid and the administrator of the NZ Long Covid Group.

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Concept image showing Covid treatment
Image: Tina Tiller

SocietyApril 28, 2022

Disabled people sidelined during omicron, inquiry finds

Concept image showing Covid treatment
Image: Tina Tiller

While most of us have experienced stress during the pandemic, some communities have suffered more than others during the most recent omicron outbreak and the rush to get back to ‘normal’, according to a new report.

Over the course of the pandemic, many groups have highlighted their concerns over decisions made by the government in response to Covid-19. This is not about hospitality, tourism, Grounded Kiwis, anti-vaxxers or other groups who have attracted the lion’s share of media and political attention, however. It’s about the 24% of the population who are disabled, and who have experienced high levels of distress and anxiety trying to access vital information, resources and support tailored to them.

This inequity led disability rights commissioner Paula Tesoriero to launch an urgent inquiry into the support, or lack of it, for disabled people and tāngata whaikaha (disabled Māori) during the omicron outbreak.

That report was released last week, and it found numerous areas where support for disabled people fell short. “The aspirations and needs of disabled people and their whānau do not appear to have been given prominence in government policy and decision making throughout the pandemic,” Tesoriero said at the time of the report’s release, adding that “some groups reported reduced levels of trust and engagement for disabled people and their whānau during the omicron phase”.

“Responses to the spread of omicron caused stress and confusion, putting the wellbeing of disabled people at risk,” she said.

She noted that Māori and Pacific organisations had taken up the slack in some circumstances, providing much-needed support.

Disability organisations and service providers have welcomed the report and its recommendations for future improvements.

Prudence Walker, CEO of the Disabled Persons Assembly, said the findings came as no surprise. “We’ve been hearing from our community who have felt they have not been a priority from the beginning. I’d like to see disability issues taken seriously in the future and not an add-on.” She said a lack of real engagement with disabled communities meant little targeted information was made available, and there were delays in the provision of alternative formats for those who required them.

Many disabled people are isolated and experiencing unrecognised mental distress because of the heightened health risks they face in during the pandemic, Walker said. For many, life is not returning to “normal” in the same way as it is for others.

Another issue was masks, which some disabled people are unable to wear. “The (original) mask exemption process had good intentions but no one saw the mask mandate spreading. In all the years I have worked in the sector I have never seen so much outright discrimination,” Walker said. Exempt people had to “prove” their trauma or impairment in shops and supermarkets, sometimes facing abuse. Anti-mask people made the problem worse. Now, more than two years into the pandemic, the government has just announced a new, clearer and legally enforceable mask exemption card.

“Our experience of the Covid response is that it has been largely reactive, with little forward planning or consideration of the needs of disabled people,” said Peter Reynolds, CEO of the NZ Disability Support Services Network.

“Providers have struggled to access information in a timely manner for their staff and the people they support. Vaccination mandates, while supported in principle, were not well thought out. At one point the disability sector was given four working days to implement the mandate and terminate staff who did not comply.

Access to vaccinations and appropriate PPE such as high quality masks had been “problematic”, and never properly prioritised as it was elsewhere. “Australia, for example, made access to vaccinations and PPE freely available to disabled people from the outset,” Reynolds said.

The focus of the inquiry was on swift action to address the increased risk for disabled people created by the move from alert levels to the Covid-19 protection framework, more widely known as the traffic light system.

Problems identified in the report relate to communications, safety in the community, disrupted support services, safety when isolating, unavailable health services and lack of support in education.

The inquiry heard that it was hard to find information; that it changed quickly, was in lots of different places, and not always in alternate formats; that there was a heavy reliance on digital information; and that phone lines didn’t always have text alternatives.

It was hard to get access to or afford the things that help keep people safe, like masks or finding accessible vaccination sites.

Told to prepare, not everyone can afford to stock up on groceries or medication in advance, online deliveries aren’t for everyone, and some people’s housing is not suitable for safe isolating or for alternative support if usual support workers are ill. Planning for these situations was lacking.

There were 14 detailed recommendations in the report. Those needing urgent attention, in partnership with disabled people and tāngata whaikaha, included:

  • Improve information about Covid-19 and omicron, and make it easily accessible for all disabled people.
  • Make it easier for disabled people to access masks, rapid antigen tests, a support worker if the usual worker is sick, and more help if a sick person has to isolate at home .
  • Set up a 24-hour, seven-days-a-week service to help people get support if their usual support person is not able to come to work; and,
  • Provide more flexible options including how to get the right support for learning if disabled children are staying away from school after reopening.

Other recommendations with a medium-or longer-term focus included: planning for service disruption, including disabled people and their whānau in Covid-19 decision-making, resourcing Māori service providers and providing targeted support for tāngata whaikaha Māori, improving data collection, and addressing the digital divide. A longer-term recommendation was to work to transform society’s cultural assumptions about disability and disabled people.

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