Chronically ill people taking immunosuppressant medication say they're struggling to access reliable information about how Covid-19 vaccines might interact with their drugs, with some saying they're choosing not to vaccinate at all.
One man even says he was told to Google for information when he rang his specialist health line.
Mark*, a 48-year-old Wellington man taking the widely-used Pharmac-funded immunosuppressant drug ciclosporin, says he's spent six weeks trying to find out how to manage his medication schedule with the vaccine, and has now chosen not to be vaccinated until he can get a firm answer.
"I'm no Siouxsie Wiles but I know enough to know that Covid affects your immune system quite badly, and here we are being asked to [get a vaccine] that interacts with your immune system and I'm on immunosuppressant drugs," he says.
"Obviously I have questions and concerns about interactions."
He asked two GPs, paid to see a specialist, phoned Healthline and a specialist helpline for his illness and said he still hadn't been able to get an evidence-backed answer.
That was disappointing when people with chronic illnesses, such as cancer, severe asthma, autoimmune diseases or kidney failure, were at a higher risk of severe complications from Covid-19, he said.
"I've spent six weeks as somebody in an at-risk category trying to get an answer to what should be a straight-forward question," he said.
"And I cannot get it. The answers I've had are people either don't know, with good reason, or in the worst possible case, 'I can't tell you to look up Google, but that's exactly what I'm doing and there are loads of websites in Europe that talk about it'."
That advice was from a nurse on the specialist helpline to whom Healthline had referred him; the nurse referred him back to Healthline, he said.
"What happens if I rely on the European websites and it comes back to haunt me and all I've done is look at some website in another part of the world and made decisions that I'm not informed to make?"
He eventually paid $200 to see a specialist, who told him getting the vaccination would "probably be fine".
"Not once, during six telephone calls, have I been directed to a single page on a website in New Zealand that has some credibility.
"I want [advice from] the Ministry of Health or Pharmac, frankly, but nobody seems to have a link or to be able to point me to somebody that can, or an organisation that can actually answer, you know, is this drug going to affect me, yes or no?"
He said he was envious of people getting the vaccine without any wait, and felt the stigma of being unvaccinated.
"I'm absolutely a vaccine believer, I think that it's a responsibility to society to take these drugs," he said.
"However, my interest in taking a drug stops at the point where it might do me permanent, lasting harm, and I can't actually get an answer on that."
Dale*, 50, a Porirua man with severe asthma who takes the corticosteroid immunosuppressant prednisone, said he had also been unable to get any information about the vaccine's interaction with his medication and condition.
"You couldn't find anything about how it would affect pre-existing conditions," he said.
"A lot of the articles are American. There wasn't anything really in New Zealand. There [were] no information packs on hand. When I asked the inoculation centre, they didn't know. So they referred me back to have an appointment with my GP."
When he asked his GP, he said he was told, "We really don't know. Everything's so new".
Dale said he went ahead and got the vaccine anyway because of "peer pressure" and because he believed he wouldn't be able to travel in the future without it.
But the second dose had "knocked the crap" out of him, and he had noticed it had increased his heart rate, he said.
"Really with my breathing - I honestly thought I was going to have a heart attack. I went for a walk that day, and I had to stop and come back. It did affect me."
Nelson woman Sarah Turner, 34, said she had also struggled to get advice on how to manage the vaccine with her dose of Humira, an immunosuppressant she gets regularly for ankylosing spondylitis, an inflammatory arthritis that affects the spine and large joints.
"I haven't had any proactive information from any medical practitioner about how the vaccine would interact with Humira."
She asked her GP, who said she thought Turner should get the vaccine. But the GP said she wasn't an expert and hadn't had any communication about patients like Turner.
Turner also called a trained Humira nurse at AbbVie Care, a specialist global helpline for her illness, but the nurse didn't have an answer for her and suggested Turner call her rheumatologist. He was unavailable.
"With something like Humira where you take it every two weeks, there was no advice about skipping a dose or when I should go for the vaccine in relation to the Humira, which I have had [when getting] the flu vaccine before," Turner said.
"So I was quite surprised that there was just kind of nothing, particularly because, like many people, I'm a complex patient and Humira is not the only medication that I'm on."
She didn't want to dissuade anyone from getting the vaccination but no-one, particularly chronically ill patients at a higher risk of Covid-19 and its complications, should be told to research for themselves when there was so much misinformation on the internet, she said.
It was "scary" getting her first dose without any information, and she felt she was "flying blind".
"I was very nervous. I didn't know how my body would react to the vaccine or what impact it might have on my other medications.
"I think it's really hard when you've lived with a chronic illness for a while and you get a lot of information thrown at you. Everyone's got a different opinion about what you should do and how you should manage your body," she said.
"I've got different family members squabbling over whether I should get vaccinated. I'm trying to do research. People are sending me articles every day. And when it comes down to it, I do not know what the best thing to do is for me, personally."
There should be more collaboration between the Ministry of Health, DHBs, GPs and private providers around complex patients, she said.
Advice on the website of the Immunisation Advisory Centre (IMAC), an independent immunisation advice organisation run by the University of Auckland's School of Population Health, said it was "important and safe" that immunocompromised people have the vaccine, and that those who were severely immunocompromised should talk to their GP or specialist to discuss optimal timing for vaccination.
IMAC medical advisor Dr Edwin Reynolds said people on immunosuppressants should discuss their condition with their prescriber to organise, if necessary, the spacing of their medication with the vaccine.
However, all the chronically-ill people RNZ spoke to, who were in Group 3 for their vaccinations, said they had already tried that, but their GP or specialists said they didn't know.
Dr Reynolds said that in a mass vaccine rollout it is "very, very difficult" to offer individualised advice.
"People might be on one, two, or even three agents. And also, it involves a large number of different health professionals. So it's not just one group.
"It's such a new vaccine that we have to upskill a whole workforce as well."
However he said "in the vast, vast majority of cases" there was no contraindication for having the vaccine just because someone was on immunosuppressants.
"So you can still have the vaccine quite safely. It's just how effective it will be."
He said that with a lot of immunosuppressive medications it was unnecessary to space it with the vaccine.
"But some, they do. And you might want to discuss that with your GP or your specialist."
The Ministry of Health has not yet responded to RNZ's inquiry.