People with Long Covid are calling on politicians to collect better data on the disease, and enable those with it to access disability support services.

Politicians from Labour, ACT, the Greens, New Zealand First and Opportunity attended an online panel on Monday morning, hosted by Long Covid Support Aotearoa.

Advocate Renee Dingwall, who also has Long Covid, said their members still reported seeing doctors who did not believe in or understand the condition, and struggling to get the support they needed.

According to the latest New Zealand Health Survey, 4.3% of adults reported living with Long Covid — roughly 185,000 people.

Larissa Hockey, chair of Long Covid Support Aotearoa, told the panel these weren’t small numbers, “and behind every statistic is a person”.

“Someone like me who still needs a rest after washing my hair, my children who missed years of education, and Renee who was a city councillor and is now housebound in a wheelchair,” she said.

There were now treatments and medications available which could ease symptoms and prevent deterioration, she said.

“So we need to ensure access to these options and bring new research developments into treatments.”

What would each party do for those with Long Covid?

 

Opportunity Party leader Qiulae Wong said its tax policy — a universal basic income for everyone, funded by a new land tax — would help to support those with Long Covid.

“If you find yourself with an unexpected illness or having to look after a loved one, those choices around our loved ones having to take time out to look after us and be paid for it, imagine if that was supported as well by a citizen’s income, which makes it a lot less challenging,” she said.

Andy Foster from New Zealand First said it was important to build understanding of Long Covid and related conditions among clinicians, and maintain funding for medicines.

“This government’s increased the funding for Pharmac very, very significantly. That was something New Zealand First did, or championed. I know ACT is championing to take it further as well. We support that.”

Todd Stephenson from ACT said it was important to make sure the taxpayer was getting good value for money.

“Plenty of money is being spent in health, but what we do not think is that we’re necessarily getting value from that.”

Dingwall asked him about plans to increase MSD doctor appointments for people on benefits.

“Having a chronic illness is a full-time job,” she said.

“You are often seen by a wide range of doctors and specialists. These appointments take months of trialling different remedies to relieve different symptoms. At the same time, you’re navigating a stretched welfare system.

“You often have to wait on the phone for an hour just to make an appointment with MSD. These are precious hours that people living with chronic illness simply don’t have. So why are you proposing to add mandatory extra appointments with MSD doctors and how are you proposing to resource that?”

Stephenson replied most people were receiving benefits appropriately, “but there are some who do not have a proper an independent review of their circumstances” and it was about making sure taxpayers’ money was well spent.

But Labour’s Ingrid Leary said she didn’t accept the claim that people were exploiting the system.

“It’s going to be much harder for disabled people to access the care they need,” she said. “If you can imagine them trying to apply chronic illness where there is a paucity of good research and data and we’ve all recognised that, then I think that’s going to be really, really problematic.”

She urged people to look at the track records of different governments, rather than listen to their promises.

“In real terms, we have seen a between 6 and 14% loss to each region in real terms of health funding over the last term of government. So Labour would commit to putting the capital gains tax money into the health system.”

Huhana Lyndon from the Green Party said patient voices should be central, and it was matter of creating better understanding and accountability across the system.

It was also important for families to access a fair income to support whānau, alongside the cost of treatment and medicines.