A new long Covid registry has been launched in Aotearoa to try and get hard data on the burden the illness has become.

Called Mātauranga Raranga, the registry will be the first time local researchers can quantify how many New Zealanders are dealing with long Covid and the impact this is having on their lives.

Jenene Crossan, one of the first New Zealanders to test positive for Covid-19 back in 2020, is collaborating with Dr Paula Lorgelly of Waipapa Taumata Rau University of Auckland on the new study.

Crossan’s own experience with long Covid - and the health inequities at play - is what motivated her to continue advocating for others with the illness.

“Unless you have the ability to self advocate or you have the funds to be able to do this, you’re stranded,” she says.

“That left me feeling very uncomfortable with walking away and going ‘Well, I’m fixed, that’s fine.’ I couldn’t do that.

“My experiences, personally, were incredibly challenging and I say that as somebody who did have the capacity to self-advocate and do have the funds to put into changing my life around … to be able to handle long Covid, because essentially you just can’t do anything, you’re left with the shell of a life.”

Quantifying the suffering

The Ministry of Health defines long Covid as symptoms that are ongoing 12 or more weeks after being infected with Covid-19. 

Studies have shown that around 10 to 20% of people infected with Covid-19 may go on to develop long Covid. That means there could be as many as 200,000 New Zealanders dealing with the illness.

Crossan says there are a lot of people needing assistance and support.

“But you’ve got to be able to prove there is a prevalence of [long Covid],” she says.

Jenene Crossan. Photo: Supplied

“The first and most important thing we’ve got to do is prove there are a lot of people out there with long Covid.

“Now, we know this to be true, but we need it in a hard data form so that we’re able to turn around to the various ministries and say this is the body of people and now here are the implications of that.”

And Crossan says those implications are huge.

“[There are] the implications on [people’s] whānau, their communities, their workplaces, their own life,” she says.

“[Long Covid] affects everything, it literally destroys lives.

“We’re hoping that we’re able to provide really key insights that will essentially provide a pathway and enable us to put in place better policies and better frameworks that will be able to assist somebody to get diagnosed and [manage] the various aspects of their life.”

Gathering the data

Crossan says a lot of consideration has gone into creating a process that isn’t overwhelming for those living with long Covid.

The online or telephone surveys can be done over an extended period of time, she says.

“We’re very clear about their rest - take their time, come back to it, we’ll remind them when they’re ready and there’s no rush.”

Crossan says those working on the registry are also very aware of data sovereignty.

“We’ve had some wonderful consultation and we’ve got a beautiful kaumātua who’s really helping guide us,” she says.

“[We’re] really expressing that this is a kind of new way of thinking about how data is collected, so that [people are] at the heart of it and they get to control where their data goes.”

Mātauranga Raranga is looking to initially recruit 3000 New Zealanders with self-reported long Covid. Those wanting to participate in the registry can find information here.

The latest research findings will be regularly posted to the Long Covid Support Aotearoa website.

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