Have your say: ADHD treatment improvements on the horizon

In September, Pharmac released two proposals which may put people with an ADHD diagnosis in a better position to access first line medications.

Lisdexamfetamine (aka Vyvanse), an ADHD medication that currently costs over $100 a month, may be publicly funded in New Zealand by December to support those with ADHD and narcolepsy. The medication is part of a class of medications called ‘amphetamines’ known to be most effective and tolerable in treating ADHD in adults and is a first line pharmacological treatment according to NICE guidelines. Pharmac provided a public consultation period of two weeks, which ended on Thursday.

But in a confusing, non-ADHD friendly way, the public consultation period for the other proposal is open until Thursday 3 October. This one is to remove the renewal criteria for people on stimulant treatments (methylphenidate, dexamfetamine and modafinil) so that issued medicine doesn’t need to be approved by a psychiatrist every two years. 

Overall, these proposals are met with eagerness from the ADHD community, but doesn’t address the inequities in accessing ADHD medication.

“Having ADHD is expensive” 

Even though she was diagnosed in 2020, Valerie Tan says she’s in the “amateur chemistry experiments on my brain” stage of pharmaceutical treatment. She’s had mixed responses from currently funded medication and says access to lisdexamfetamine gives her more options for her process of trial and error. It may also reduce demand on funded medication which is often at a shortage.

But Tan is more excited about the prospect of not having to pay hundreds of dollars every two years to renew her special authority. “Having ADHD is expensive”, she says. “We don’t suddenly stop having ADHD and we don’t suddenly stop needing medication that works for us. Why do we need to keep doing this?”

Renewal criteria “the worst setup for neuro spicy brains”

After his diagnosis five years ago, Steve McCleary was prescribed Rubifen. Emotional dysregulation had previously impacted heavily on his personal relationships but medication gave him a measure of control over how he could experience and react to life. However, he’s always felt that the process to access medication was ludicrous, “especially for people that struggle with focusing and following through on things that have multiple steps.” 

“It’s frustrating because every two years you essentially have to make another appointment with a psychiatrist and pay another $500 to essentially be told it’s not a phase and you still have your lifelong condition.” 

“It’s a monetary thing during a cost of living crisis, it’s a time thing…you often have to book at least six months in advance and the first time I had to do it I wasn’t aware…so I was just sitting without medication for about three months.” At one point, he was on Concerta due to a Rubifen shortage, which was “much harsher” on him. 

“One of the biggest jokes for ADHD is the idea that you get addicted to your stimulants when our biggest issue is remembering to take them in the first place.” 

Proposals may reduce pressure on the health system

Following her own diagnosis, Julie Legg surveyed and interviewed many people with ADHD for her book released this year, The Missing Piece. She’s learnt, “it takes trial and monitoring for side-effects and effectiveness, along with dosage adjustments if necessary, so having a variety of funded ADHD medications available is certainly a positive thing.”

Legg says the proposals are a great win and game-changer for the ADHD community. “Given the pressure on the health system in recent years, a psychiatrist appointment can be hard to secure in a timely fashion, not only for those waiting for an initial diagnosis, but for those requiring the two-yearly review to continue their existing prescription… I think the proposed change would help alleviate the pressure psychiatrists are currently under.”

“I am rawdogging too close to the sun”

In the two years following her diagnosis, Asia Martusia King has been on Ritalin, Rubifen and Concerta which have all responded well to her ADHD symptoms, but given side effects. 

“Ritalin doesn’t last long enough, Rubifen makes me anxious and sweaty and weird, and Concerta lasts too long and makes my insomnia worse.” While funded Vyvanse would give her another option to try, she’s struggling to access medication, period. 

“All the benefits of the meds I’ve tried have still greatly outweighed the side effects and I’d 100% still be on them if I could afford it. I only came off them because I literally don’t have the money.”

Outside of second-line medications (like bupropion and atomoxetine), ADHD medication can only be prescribed by paediatricians and psychiatrists. Martusia King has tried to no avail to renew her medication through the public health system. She was met with clueless GPs and ghosted by hospitals, leaving her with the option of accessing her medicine through private psychiatrists.“It’s infuriating having a taste of what life can be like only to have it whipped away and sealed behind a paywall.”

Martusia King says her brain is like porridge. “It’s ridiculous telling the people who have an impulsive forget brain disease that you have to remember to book appointments months in advance and save huge amounts of money to access your drugs every two years.

Not a flawless proposal

Dr Steven Lillis is an academic GP at the University of Waikato who works with many patients with ADHD. He’s in support of funding lisdexamfetamine as it is a more effective and tolerable drug with a smoother ‘on-off’ effect over a longer period of time, adding that because of this, there is a less appeal to use the medication for recreational purposes.

However, Lillis says the proposal doesn’t make access to the medication much easier given that currently, only psychiatrists and paediatricians can prescribe stimulants to treat ADHD. 

“While the public system does have consultant psychiatrists, the significant majority of publicly funded mental health services refuse to see those with ADHD unless there are severe levels of coexisting psychiatric disease.” This explains why Steve and Asia can only access medication through self-funding private consultations.

Lillis found in his research that extending prescription authority of first-line ADHD medication to primary care providers would alleviate the flaws and pressure on the current ADHD care in Aotearoa which he says are “unacceptable”. The exception is for under 18s whom he says should be managed by secondary care. 

To mitigate potential inappropriate prescribing, further training, peer support, auditing and supervision and monitoring should be implemented, he says. “It must also be balanced against the considerable harm currently occurring because tens of thousands of people in Aotearoa are being denied the most effective therapy for a debilitating condition.”

Lillis recommends lobbying for lisdexamfetamine’s availability at primary care. “The current restrictions are in legislation. Only a government can change legislation. In a democracy, governments who fail to listen to the people do so at their peril.”

You can provide feedback to Pharmac on removing the renewal criteria for stimulant treatments, or send them an email at consult@pharmac.govt.nz before consultation closes at 5pm on Thursday 3 October.

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