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Image: Getty Images/additional design by Tina Tiller
Image: Getty Images/additional design by Tina Tiller

SocietyApril 16, 2022

I spent 22 years calling myself lazy. I was diagnosed with ADHD in 30 minutes

Image: Getty Images/additional design by Tina Tiller
Image: Getty Images/additional design by Tina Tiller

ADHD is one of the most common mental conditions in the world, but tight restrictions on who can disgnose and treat it have left thousands of New Zealanders in the lurch. Felix Walton reports.

I’ve got a brass band living in my brain.

That’s what I would tell people before my diagnosis. An ensemble of horns, blaring the most sickeningly unpredictable free jazz arrangement. When words fail me, I turn to metaphor. I didn’t have the language to describe what “my deal” was, but I do now. I have ADHD.

I survived school just fine. Thrived, even. It’s why my parents never imagined that my brain could be different, and it’s why I burned myself out. I understand now that I had been compensating, “masking” my symptoms by overworking my mind.

A close friend, who had been diagnosed himself just a few years earlier, shared his journey with me. I was shocked by how many of his experiences matched my own. For most of my life, I had seen peers breeze through tasks that, for me, could derail entire days. It was the first time I recognized that others were going through the same thing.

But when you’re an adult, especially one with a deficit of attention, it’s not easy to plan your next move. It would be months before I even asked for an assessment, and many months more for it to be scheduled.

When it finally happened, I was diagnosed in about half an hour.

In New Zealand, wait lists for private ADHD assessments can stretch for months or years at a time. If private care isn’t an option, you’re basically out of luck. In a hilarious twist of irony, the journey to understanding your inattentive mind is lined with hoops, hurdles and distractions.

Darrin Bull, chair of ADHD New Zealand, has two children with diagnoses, and oodles of friends who point to him as the genetic link. Though he hasn’t been assessed himself, Bull is all too familiar with the process. “I consider myself very fortunate because I can afford to pay for their treatment privately,” he says of his children.

Bull initially sought an assessment for his son through the public sector, but was met with a waitlist that stretched beyond the horizon. “When we went private there was a three month wait,” he says. “Three years later we got a call from the DHB saying an appointment had opened up publicly.”

“I don’t think he would’ve stayed in school if we had to wait those three years.”

ADHD New Zealand maintains a database of psychiatrists who can perform assessments. “Right now, the entire South Island just has one,” says Bull. “He’s not the only person, but people ask us to remove them from the site because they’re overbooked and have wait times lasting several years.”

 

My decision to get assessed was driven by a desire to find answers. I wanted to understand my brain in a way that had previously eluded me. Even faced by a comparatively tiny wait time, my violent impatience felt like torture. Subjecting someone to that uncertainty over multiple years is unthinkably cruel.

But that’s the reality for many children and adults living with undiagnosed ADHD, trapped in the limbo of self-diagnosis. When the real world can’t offer support, they turn to the internet.

“There’s some amazing videos on TikTok about ADHD, and then people are diagnosing themselves through that,” says Bull. “I was recently asked if I have a problem with self-diagnoses, and I said: well no, not if it takes two years to get an assessment.

“If it’s your only option, what else are you gonna do?”

It was through reading and listening to others’ stories that I was able to identify my own ADHD. Although social media overflows with misinformation, it has also played a vital role in destigmatising the disorder and has revealed a surprisingly large population of under-served people.

ADHD New Zealand estimates that 280,000 people across the country have ADHD. Four out of every five, Bull says, are undiagnosed.

“There’s very little support,” he says. “And what is there is driven by good-hearted people, rather than a robust system.”

During my search for treatment, it often felt like the healthcare system was actively hostile. That’s by design. In 1998, the law was changed to make accessing medication far harder.

“It was a moral panic about Ritalin,” says Bull. “That it was being over-prescribed and that people were lying about ADHD to sell it.” The stimulant medication methylphenidate (the drug’s generic name; Ritalin is the best-known brand) has long been considered the most effective treatment for ADHD, and while some choose not to take it, it’s proven to be vital for countless others in keeping up with daily life.

By turning methylphenidate into a “specialist only” medication, anyone seeking treatment over the last two decades has struggled against a psychiatry sector that was, and remains, unprepared for that demand.

“The media started to push this story, and very quickly the ability for someone to get diagnosed by a GP was removed,” says Bull. “You read those articles, and what [then health minister Bill English] told the media, and your heart just sinks.” That stigma continues to punish everyone with ADHD, whether they’re seeking an assessment or renewing their prescription.

Many doubt it exists at all, especially among adults. “A few years later, I saw a cover story: ADHD or bad parenting?” says Bull.

It’s easy to assign personal blame for what looks, from the outside, like bad behaviour.

That blame sticks with you. In the months leading up to my assessment, I doubted everything I thought I knew. I was a liar, a phony looking for an easy solution. I needed to try harder. I needed more discipline. It was never enough.

Bull points out that people with ADHD are five times as likely to attempt suicide. I hadn’t heard that statistic before, but I knew it was true.

It’s only recently that professionals have acknowledged that ADHD persists into adulthood, and the stigma is starting to erode. Auckland Central MP Chlöe Swarbrick has opened up about her late diagnosis, prompting a nationwide conversation about the disorder, and the large population that remains unsupported.

It also got people talking about what it means to have ADHD in the first place. Is Chlöe Swarbrick an incapable politician? Of course not. Am I an incapable journalist? Not because of my ADHD, at least.

Part of my journey has been recognising the ways in which ADHD makes me better. “It’s a power that makes people approach problems in a different way,” says Bull. “We need that in our world, we need creativity.”

If there’s one thing I’ve never doubted, it’s my ability to problem solve. It makes sense. My brain is a puzzle that I’m always piecing together. I’ve gotten rather good at it. The benefit to thinking differently is finding solutions nobody else considers.

That ability, and the assumption that ADHD is inherently negative, is why I lasted so long without a diagnosis. It’s also why some are questioning whether “disorder” is the right word to use.

“People like to fit us into these diagnoses,” says Damaris Coulter, co-founder of Auckland restaurant Coco’s Cantina, who was diagnosed four years ago. “They need to understand what you are, they don’t have time for nuance.”

She describes ADHD as a difference in “operating system.” It’s an apt metaphor. Much like iOS and Android: we can do the same stuff, we just get there a little differently.

 

Navigating those differences can be hard, but it’s a worthwhile endeavour. “I think the diversity it brings makes the world a much better place,” says Bull. But bridging that gap means undoing decades of misunderstandings.

“I don’t bother explaining it to people,” says Coulter. “I feel like you can never explain it to them, because they see you as a menace. They see you as difficult, contrary, agitating.”

“They don’t see you for what you are,” she adds.

What I am hasn’t changed, but the way I see myself has. Being able to categorise myself is deeply comforting, but that category doesn’t define me.

“I think everyone is on the same spectrum, it’s just a matter of where they fall,” says Coulter.

Most people fall a bit closer to normal. You know normal: it’s when you’re never late, when you sit through eight hours of work and meet every deadline. I’m definitely not one of those people, and you probably aren’t either.

Those people don’t exist. They’re a standard we hold ourselves to but never really meet.

So let’s look at it a little differently.

Some are raising concerns that those aged 65 are being offered a less effective vaccine than they were last year. (Image: Archi Banal)
Some are raising concerns that those aged 65 are being offered a less effective vaccine than they were last year. (Image: Archi Banal)

SocietyApril 14, 2022

Are over-65s getting a less effective flu jab than last year?

Some are raising concerns that those aged 65 are being offered a less effective vaccine than they were last year. (Image: Archi Banal)
Some are raising concerns that those aged 65 are being offered a less effective vaccine than they were last year. (Image: Archi Banal)

It’s more important than ever to get vaccinated against the flu this year and, as always, over-65s are particularly at risk. But a vaccine developed specifically for them, which was free in 2021, is no longer funded. 

You might have already started adding a merino layer under your outfits and popping an umbrella in your bag as you get ready for work. You’re probably craving warming soups and cosy nights at home more and more. Winter is coming, and that means flu season is upon us. 

It’s always a good idea to get the flu vaccine but this year, it’s even more important than in previous winters. Over the last two years, restrictions to slow the spread of Covid-19 have kept us all healthier. They’ve also meant that the regular circulation of bugs that act like natural boosters when flu season hits have dwindled. Now, as Covid-19 restrictions are eased and borders begin to open up, experts say it’s vital we get our jabs – and the more of us who do the better. 

For over-65s, people with particular health conditions, pregnant people and, since this flu season, Māori and Pasifika over-55s, the flu vaccine is fully funded – which means it’s free. The risk of influenza-related hospitalisation is greater for older people compared with healthy adults aged under 65 years. Increasing levels of frailty and the presence of chronic conditions like diabetes or heart, kidney, neurological or respiratory diseases add to the risk for this group. 

However, some are raising concerns that those aged 65 and over are being offered a potentially less effective vaccine than they were last year. 

Under a four-year supply agreement for the 2020 to 2023 influenza seasons, independent drug-buying agency Pharmac is funding the flu vaccine Afluria Quad – making it free for the eligible groups. But last year, supply delays of Afluria Quad meant that for over-65s, Pharmac temporarily funded an alternative. Called Fluad Quad, it’s the only available flu vaccine that works with an immune enhancer or adjuvant – an ingredient that improves the immune response to the vaccine in people aged 65 and over. But Pharmac hasn’t yet agreed to fund it permanently, meaning those who want Fluad Quad this year must pay for it.

An over-65 Italian man gets his free flu shot in Milan in 2020 (Photo: Alessandro Bremec/NurPhoto)

Last week an Auckland woman, who described herself as “well over 65”, told The Spinoff she went to get her flu vaccine. Ahead of her vaccine, which was advertised as free, she was asked “did I want the free one, or the one specially made for older people who may need help making the antibodies?” That vaccine, Fluad Quad, would cost $35. “I was told that it was the one given free last year,” she said.

She paid the $35 for Fluad Quad and said her concern is not that she personally had to pay for the vaccine. She could afford it, and “naturally enough, I wanted the best to protect me”. Instead, she’s worried “that this seems like a two-tier system: one for those with money to choose, and one for those without”. She’s also concerned that others may not be informed of the choice or variation between the vaccines.

“I’m just indignant on behalf of all the poor immunocompromised or elderly people who either could not afford or who are not informed about this option,” she said.

When contacted by The Spinoff, Pharmac’s chief medical officer Dr David Hughes said in an emailed statement that in 2020, the Immunisation Advisory Committee advised the agency “there was limited evidence and no direct comparison to show the difference between Fluad Quad and Afluria Quad’s effectiveness”. For that reason, Fluad Quad was placed on the “cost-neutral list”, which, according to the Pharmac website, means “it may get funded if we can negotiate a deal that saves money, or at least doesn’t cost more than something already funded”.

In 2021, “the supplier marketed it as a more effective vaccine”, said Hughes, “but it has only been recently that they have supplied more evidence to Pharmac to support their application for Fluad Quad being more effective than Afluria Quad in people over 65 years of age”. The Immunisation Advisory Committee that advises Pharmac will be considering the more up-to-date evidence and providing advice on it at their meeting next month, he said.

The data to date on the Fluad vaccine suggests it does to some extent give the best immune response for elderly, explained professor Nikki Turner, the director of the Immunisation Advisory Centre at the University of Auckland. Because the traditional flu vaccine is less effective in older adults than in younger people, the Fluad vaccine has an enzyme specifically designed to make it more effective for elderly. But, “it’s tricky”, said Turner. “We can’t simply say this vaccine is better than this vaccine.” Turner would like to see Pharmac continue reviewing the data to “better quantify the gains for the cost”.

The data to date on the Fluad vaccine does show it ‘to some extent’ gives the best immune response for elderly (Photo: Getty Images)

Associate professor Helen Petousis-Harris, a vaccinologist at the University of Auckland, agreed, saying the decision to not fund the potentially more effective vaccine was a symptom of budget constraints within the drug-buying mechanisms. “I like the idea that you have the best vaccine available, but it’s difficult when you have a constrained budget,” she said.

Studies that compare the enhanced Fluad vaccine with the regular vaccine “consistently show that it provides extra protections”, she said. But Petousis-Harris wanted to reassure over-65s that the difference between the vaccines is only slight. “What’s most important,” she said, “is that the vaccine is a match with the flu that’s circulating”. Both the Fluad and Afluria vaccines protect against the four strains of the virus identified by the World Health Organisation as circulating this year.

“It’s important people know they have other options,” Petousis-Harris added. However, even if they were notified of the difference, “it’s inequitable because people can’t afford it”, she noted.

“For people who are most at risk of complications, like Māori and Pasifika, it would be good to see the best vaccine available for these groups if we want to be genuine about reducing inequity.”

It’s difficult to know what our flu season will look like this year, but there are concerns across the board that Aotearoa will be hit hard by the virus in the coming months. Hughes said he wanted to “encourage all who are eligible for the free flu vaccine to book their vaccination as soon as possible”, adding that “the funded flu vaccine, Afluria Quad, is an effective layer of protection against this season’s flu”. 

Like the Covid-19 vaccine, flu vaccines are “about community protection, not individual protection”, said Turner. Thankfully, we can apply the same practices we’ve learnt from reducing the spread of Covid-19 to help protect those most vulnerable to the flu, and ease the burden on our health system, which is already under strain because of Covid-19. That means getting vaccinated (especially if you’re around older adults) and staying home if you’re sick. “Flu vaccines do help stop the spread, and that’s more effective when we immunise collectively,” said Hughes.