Long Covid continues to take heavy toll, so will the government act?

“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.