Chronically ill people who take immunosuppressive medications say they have difficulty accessing reliable information about how Covid-19 vaccines might interact with their medications, with some saying they choose not to get vaccinated at all.
One man even says they asked Google for information when he called his health line.
Mark *, a 48-year-old man from Wellington who takes the widely used immunosuppressant drug cyclosporine, which is widely used and funded by Pharmac, says he spent six weeks trying to figure out how to manage his medication schedule with the vaccine, and has now chosen not to get vaccinated. until you can get a firm answer.
“I am not Siouxsie Wiles, but I know enough to know that Covid affects your immune system quite a bit, and here we are asked to [get a vaccine] it interacts with your immune system and I’m taking immunosuppressive medications, “he says.
“Obviously I have questions and concerns about interactions.”
He asked two GPs, paid to see a specialist, called Healthline and a specialized helpline for his condition, and said he had not yet been able to get an answer supported by evidence.
That was disappointing when people with chronic diseases, such as cancer, severe asthma, autoimmune diseases or kidney failure, were at higher risk of serious complications from Covid-19, he said.
“I spent six weeks as someone in a risk category trying to get an answer to what should be a simple question,” he said.
“And I can’t understand it. The responses I’ve had are that people don’t know, with good reason, or in the worst case scenario, ‘I can’t tell you to Google it, but that’s exactly what I’ I’m doing it and there are a lot of websites in Europe talking about it. ‘
That advice came from a nurse in the specialty helpline that Healthline had referred him to; the nurse referred him back to Healthline, he said.
“What if I trust 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 make decisions that I’m not informed about?”
She eventually paid $ 200 to see a specialist, who told her that getting the vaccine “would probably be okay.”
“Not once in six phone calls have I been directed to a single page on a website in New Zealand that has any credibility.
“Want [advice from] the Ministry of Health or Pharmacy, frankly, but nobody seems to have a link or be able to point me to someone who can, or an organization that can really respond, you know, is this drug going to affect me, yes or no? ? “
He said he was envious of people getting the vaccine without waiting and felt the stigma of not being vaccinated.
“I am absolutely a believer in vaccines, I think it is a responsibility for society to take these drugs,” he said.
“However, my interest in taking a drug stops at the point where it could cause permanent and lasting harm to me, and I can’t really get an answer about it.”
Dale *, 50, a Porirua man with severe asthma taking prednisone, a corticosteroid immunosuppressant, said he had also been unable to obtain information about the vaccine’s interaction with his medication and his condition.
“Nothing could be found about how it would affect pre-existing conditions,” he said.
“Many of the items are American. Actually, there was nothing in New Zealand. [were] there are no information packages on hand. When I asked the vaccination center, they didn’t know. So they referred me for an appointment with my GP. “
When he asked his GP, he said he had been told, “We really don’t know. Everything is so new.”
Dale said he went ahead and received the vaccine anyway due to “peer pressure” and because he believed he would not be able to travel in the future without it.
But the second dose had “hit” him and he had noticed his heart rate increased, he said.
“Really with my breathing, I honestly thought I was going to have a heart attack. I went out for a walk that day, and I had to stop and go back. It affected me.”
Nelson’s wife, Sarah Turner, 34, said she also had trouble getting advice on how to administer the vaccine with her dose of Humira, an immunosuppressant she receives regularly for ankylosing spondylitis, an inflammatory arthritis that affects the spine. and large joints.
“I have not received any proactive information from any physician on how the vaccine would interact with Humira.”
He asked his GP, who said he thought Turner should get the vaccine. But the GP said she was not an expert and had not had any communication about patients like Turner.
Turner also called a Humira-trained nurse at AbbVie Care, a specialized global helpline for her condition, but the nurse did not have an answer for her and suggested that Turner call her rheumatologist. I was not available.
“With something like Humira where it’s taken every other week, there was no advice on skipping a dose or when I should go for the vaccine in relation to the Humira, which I’ve already had. [when getting] the flu shot earlier, “Turner said.
“So I was quite surprised that there was nothing, especially since, like many people, I am a complex patient and Humira is not the only medication I am taking.”
He didn’t want to dissuade anyone from getting the vaccine, but no one, particularly chronic disease patients at increased risk for Covid-19 and its complications, should be told to investigate for himself when there was so much misinformation on the internet. . she said.
It was “scary” to get his first dose without any information, and he felt like he 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 is really difficult when you have lived with a chronic illness for a while and you receive a lot of information. Everyone has a different opinion about what you should do and how you should handle your body,” he said. .
“I have different family members arguing about whether to get vaccinated. I’m trying to do research. People send me articles every day. And when it comes down to it, I don’t know what the best thing to do is for me personally. “.
There should be more collaboration between the Ministry of Health, health doctors, GPs and private providers around complex patients, he said.
The advice on the website of the Immunization Advisory Center (IMAC), an independent immunization advisory organization run by the University of Auckland School of Population Health, said it was “important and safe” for immunosuppressed people to have the vaccine, and that those who were severely immunosuppressed should speak with their GP or specialist to discuss the optimal time for vaccination.
IMAC medical adviser Dr. Edwin Reynolds said that people taking immunosuppressants should discuss their condition with their doctor to arrange, if necessary, spacing their medication with the vaccine.
However, all of the chronically ill people that RNZ spoke to, who were in Group 3 for their vaccinations, said they had already tried it, but their GP or specialists said they did not know.
Dr. Reynolds said that in a vaccine mass launch it is “very, very difficult” to offer individualized advice.
“People can be in one, two or even three agents. And also, it involves a lot of different health professionals. So it is not just one group.
“It is such a new vaccine that we also have to upgrade the skills of the entire workforce.”
However, he said that “in the vast majority of cases” there was no contraindication to receiving the vaccine just because someone was taking immunosuppressants.
“So you can still get the vaccine pretty safely. It’s how effective it will be.”
He said that with many immunosuppressive drugs it was not necessary to space it out with the vaccine.
“But some do. And you may want to discuss it with your GP or specialist.”
The Ministry of Health has not yet responded to RNZ’s query.