E29 – Pharmac Update / ADHD News + guest Darrin Bull

Julie Interviews Guests

Julie Legg chats with Darrin Bull, spokesperson for ADHD New Zealand, about the changes newly announced by Pharmac that promise to reshape ADHD treatment accessibility in New Zealand.        

From December 1, 2024, Pharmac will fund lisdexamfetamine (Vyvanse), a next-generation ADHD medication, and remove the two-year psychiatrist renewal requirement for prescriptions. Darrin highlights the benefits of these changes, long-advocated by ADHD New Zealand, that aims to address significant barriers faced by those with ADHD.

KEY TAKEAWAYS

  • Funding of Vyvanse: From December 1, 2024, Pharmac in New Zealand will fund lisdexamfetamine (Vyvanse), a next-generation ADHD stimulant medication.
  • Removal of Renewal Criteria: The requirement to renew ADHD medication prescriptions every two years via a psychiatrist will be eliminated.
  • Benefits of new medication: Offers fewer side effects, especially related to sleep. Reduces addiction risks compared to older stimulants. Serves as an additional option, but not a universal solution—effectiveness varies among individuals.
  • Access: Special Authority approval from a psychiatrist will still be needed to start using  lisdexamfetamine .
  • Advocacy: ADHD New Zealand advocated for these changes for nearly a decade, as prior renewal requirements posed significant barriers for patients. These changes didn’t happen overnight. ADHD New Zealand has been advocating tirelessly for years—holding 339 meetings since 2018 alone—to make these advancements a reality. 

LINKS

TRANSCRIPT

JULIE: I’m Julie Legg, author of The Missing Piece and diagnosed with ADHD at 52. Welcome to ADHDifference. In today’s episode I’m chatting with Darrin Bull who is the spokesperson from ADHD New Zealand. Now this is off the back of some huge news from Pharmac just recently announced. From the 1st of December 2024 Pharmac will be funding a new ADHD stimulant called lisdexamfetamine, also known as Vyvanse. Also they will remove the renewal criteria for ADHD medication. Up until this point every 2 years ADHD medication must be renewed through a psychiatrist. Here’s Darrin. So this is all about the exciting news from Pharmac and it’s going to make a big change to many people with ADHD across New Zealand. So I thought I’d get straight to it. Why is the addition of lisdexamfetamine, or Vyvanse, so important in the development for ADHD treatment?

DARRIN: So it catches up the approach taken overseas to the approach that we’re now going to take in New Zealand. So lisdexamfetamine or Vyvanse, is the next generation of ADHD medication and it’s been available in the US, and the UK/Europe, and Australia for a number of years. So it’s a fantastic step forward now compared to the previous generations such as Ritalin and Concerta. It has less side effects especially with sleep and it’s away from that sort of medication that might have addiction issues which is fantastic. Now I hasten to add that everyone is different. So there’ll be those who are better suited for Vyvanse and those who will find that Concerta works for them. So just bear that in mind. It’s not the wonder drug. It’s just another tool within the medication tool box.

JULIE: And on that Darrin, it’s up to the psychiatrist to determine based on … yeah. So rather than asking for it, the psychiatrist will be the one deciding.

DARRIN: Correct. So the psychiatrist and medical advice is still absolutely required and you will still need a Special Authority for it to start it.

JULIE: Brilliant. So along with the news about introducing this new funded stimulant medication, of course the 2-year renewal process has been dropped, or will be from the 1st of December 2024. How will removing that process really be a positive move for the ADHD community?

DARRIN: So ADHD New Zealand has been advocating for this for nearly a decade. And our own research shows that over half of our community that are on medication, getting that renewal is a significant barrier in two ways. First of all, you need to go back to a psychiatrist and, goodness knows, there’s not enough appointments which means you go private, and when you go private you have to pay. A renewal can cost I’ve heard a range of $300 actually and up to the highest I’ve heard is $4,500. So it removes that cost and removes that time pressure. The second thing is I always thought it was kind of stigmatizing for someone with ADHD to go back to a psychiatrist and ask “Do I still have ADHD?” and so it’s just a significant barrier. I think there is a real positive to this as we estimate it frees up potentially 10,000 psychiatrist hours in New Zealand a year. [Wow.] So it’s a giant step forward.

JULIE: And freeing up those resources will also too mean that getting the initial assessment and diagnosis may free-flow a lot easier [yes] because there’s no backlog of renewal appointments. That’s brilliant. And well the news I think is brilliant. I actually don’t take medication myself but I’ve spoken to many many adults that do and it’s been quite challenging times. Have you had any feedback from the ADHD community with regards to the recent announcements?

DARRIN: The feedback has been overwhelmingly positive and in fact, to be fair, a lot of people say “I don’t believe this is really happening.” The way we do it now has been in place since 1999 so it’s a significant change. It’s the most significant change in the field of ADHD probably ever in New Zealand, so it’s fantastic. And look, I think the real moment will come when someone rings up and asks for a renewal script and they’ll go “Sure this is it,” and get it sorted.

JULIE: Yeah, that’s amazing. Wonderful. Now ADHD New Zealand has been a huge part in in making change for the community for many decades. Can you tell us a little bit about the work that you’ve done behind the scenes leading up to this Pharmac change?

DARRIN: Yeah so for a bit of history, the ADHD Association started in the early’ 70s as a parent support group, and it was largely Auckland based, and didn’t have very many members. I joined in 2008 when my son was diagnosed with ADHD. And, in 2011, went on their board. And in 2016, by that time I was the chair, we realized that I’m lucky. I do, in my other life, earn good income and able to pile a stack of support into Matthew but what I realized is it didn’t happen for most New Zealanders like this, and nothing was changing. So that’s why we decided to form ADHD New Zealand. We are tiny. We have one employee. But we started to change it. And look, go back to 2016 in speech marks “girls could not get ADHD”. It was the domain of naughty little boys, right? So we’ve had to change all of these attitudes. And to fast forward to today, I’ve kept track of every meeting to get this change. So since 2018 it’s 339 meetings. Step by step by step. Then all of a sudden in 2020 people started taking ADHD New Zealand seriously. Under different definitions we’ve got 30,000-40,000 members, making us the largest community-based ADHD organization in the Southern Hemisphere. And when you have a voice, you can prove that you’ve got that voice, things started to change. And then in 2022 we had hui at Parliament. We were the first not-for-profit to have a hui at Parliament for the day, thanks to Chloe Swarbrick. What was remarkable about that it was every health department like Te Whatu Ora, Pharmac,  Ministry of Health were all there as well as all the colleges. The College of GPs, psychiatrists, the clinical psychologists, and even the police. And what was amazing about the day is we were able to prove how the ADHD community was suffering in terms of the response from the medical sector and how I’ve had it described it in the media as ‘one giant own goal’. And then how we could start to take steps to fix it. And unbelievably government just said “Yes, let’s keep doing it.” And while 2022 to now is two years, it’s remarkable how fast that went. And it’s also remarkable that it’s across two Labour governments under Jacinda, and then Chris Hipkins, and the work continued under Chris Luxon and his government. So the government, the ministers, the respective three Ministers of Health, have continued it.  And in particular of this latest change, Nicola Willis was instrumental and continuing to drive it forward as well, so a lot of work. And I should do a shout out to Pharmac. I know they’re incredibly easy to criticize but they’ve been most incredibly responsive. And we made a few changes last year as well, such as the three-month scripts picked up monthly and things like that. So it’s amazing what they’ve done for us.

JULIE: That’s incredible. And you’ve talked to the ADHD Community, or you gather insights from them too, don’t you? And then you have regular surveys and that I guess helps gather the information in order to push for change. You’ve had a recent ‘adults survey’. Are you able to share any insights or results from that?

DARRIN: So the adult survey we released about four months ago and what it really highlights, yes we know the barriers, we know the Special Authority process is a massive barrier, the need to go private is still an issue, but we’re getting past that. But what it highlights is two other key issues. I think the first is the associated stigma with ADHD is still there. Just under half of people have told their families and workplaces and, as adults, that is because they’re too worried about what could happen if they admit it. And the second issue is there are significant mental health issues and they haven’t gone away. And what we know from overseas research such as in Canada, is suicide attempts in adults is 4:1, those with ADHD versus those without. And in Australia for 12 -18-year-olds it’s 2:1. So I’m really hopeful even if these changes can remove some of that stigma, remove some of those barriers, and then the next thing we’ll do is step into the mental health side.

JULIE: There’s so much work to do but gosh, what remarkable positive change for now, and we absolutely take that win, don’t we. Are there any other concerns or additional needs that you may want to advocate for? Or is there anything that …?

DARRIN: Yeah yeah. So we haven’t finished with changes to the health system, and we’re working hard, and I’m optimistic of a positive announcement next year and that will be the ability for specially trained GPs to diagnose ADHD. So to be clear, they’ll be ideally specially trained, and there’s some who are specially trained now. And then the second thing is they’ll be monitored by associated psychiatrists or clinical psychologists. Now the advantage of that is effectively the wait times and those barriers will remove and people can get the help that they need. And then the second advantage, if approved and if it goes live, what that is doing is really freeing up the psychologists, and clinical psychiatrists, and clinical psychologists, into helping those from our community that may actually really need help. And then, having had two children with ADHD, you can’t talk about ADHD and just hang your head in shame when you look at the education system response. So we’re moving onto that. I have to admit when we started our advocacy, I thought changing the education system would be way easier than changing the health system, which actually has required legislative change. But it turns out the health system is way way easier to change the education. And again that theme of our own goal, if you can help a child that’s neurodiverse, and help a child who has ADHD, then you won’t have the problems when they’re adults. So this is where it starts but it’s a long way to go, yeah.

JULIE: Well the ripple effect is huge. Ripple effect of misdiagnosis or undiagnosis, but also the positive change and so yeah, I’m feeling really good about this. And thank you so much for your time, Darrin. [No problem.] I just wanted to talk to the man who knows it all just to put this podcast out and celebrate.

DARRIN: Yeah and we should take that moment as a country. We are now miles ahead of other countries. And I do media requests from overseas asking how is ADHD in New Zealand treated so much better than some of our counterpart Western countries.

JULIE: Fabulous, fabulous. Okay I will let you go Darrin. [Thank you.] Thank you so much and no doubt we will chat again in the near future.

DARRIN: Yes.

JULIE: I’m Julie Legg, author of The Missing Piece and diagnosed with ADHD at 52. Welcome to ADHDifference. In today’s episode I’m chatting with Darrin Bull who is the spokesperson from ADHD New Zealand. Now this is off the back of some huge news from Pharmac just recently announced. From the 1st of December 2024 Pharmac will be funding a new ADHD stimulant called lisdexamfetamine, also known as Vyvanse. Also they will remove the renewal criteria for ADHD medication. Up until this point every 2 years ADHD medication must be renewed through a psychiatrist. Here’s Darrin. So this is all about the exciting news from Pharmac and it’s going to make a big change to many people with ADHD across New Zealand. So I thought I’d get straight to it. Why is the addition of lisdexamfetamine, or Vyvanse, so important in the development for ADHD treatment?

DARRIN: So it catches up the approach taken overseas to the approach that we’re now going to take in New Zealand. So lisdexamfetamine or Vyvanse, is the next generation of ADHD medication and it’s been available in the US, and the UK/Europe, and Australia for a number of years. So it’s a fantastic step forward now compared to the previous generations such as Ritalin and Concerta. It has less side effects especially with sleep and it’s away from that sort of medication that might have addiction issues which is fantastic. Now I hasten to add that everyone is different. So there’ll be those who are better suited for Vyvanse and those who will find that Concerta works for them. So just bear that in mind. It’s not the wonder drug. It’s just another tool within the medication tool box.

JULIE: And on that Darrin, it’s up to the psychiatrist to determine based on … yeah. So rather than asking for it, the psychiatrist will be the one deciding.

DARRIN: Correct. So the psychiatrist and medical advice is still absolutely required and you will still need a Special Authority for it to start it.

JULIE: Brilliant. So along with the news about introducing this new funded stimulant medication, of course the 2-year renewal process has been dropped, or will be from the 1st of December 2024. How will removing that process really be a positive move for the ADHD community?

DARRIN: So ADHD New Zealand has been advocating for this for nearly a decade. And our own research shows that over half of our community that are on medication, getting that renewal is a significant barrier in two ways. First of all, you need to go back to a psychiatrist and, goodness knows, there’s not enough appointments which means you go private, and when you go private you have to pay. A renewal can cost I’ve heard a range of $300 actually and up to the highest I’ve heard is $4,500. So it removes that cost and removes that time pressure. The second thing is I always thought it was kind of stigmatizing for someone with ADHD to go back to a psychiatrist and ask “Do I still have ADHD?” and so it’s just a significant barrier. I think there is a real positive to this as we estimate it frees up potentially 10,000 psychiatrist hours in New Zealand a year. [Wow.] So it’s a giant step forward.

JULIE: And freeing up those resources will also too mean that getting the initial assessment and diagnosis may free-flow a lot easier [yes] because there’s no backlog of renewal appointments. That’s brilliant. And well the news I think is brilliant. I actually don’t take medication myself but I’ve spoken to many many adults that do and it’s been quite challenging times. Have you had any feedback from the ADHD community with regards to the recent announcements?

DARRIN: The feedback has been overwhelmingly positive and in fact, to be fair, a lot of people say “I don’t believe this is really happening.” The way we do it now has been in place since 1999 so it’s a significant change. It’s the most significant change in the field of ADHD probably ever in New Zealand, so it’s fantastic. And look, I think the real moment will come when someone rings up and asks for a renewal script and they’ll go “Sure this is it,” and get it sorted.

JULIE: Yeah, that’s amazing. Wonderful. Now ADHD New Zealand has been a huge part in in making change for the community for many decades. Can you tell us a little bit about the work that you’ve done behind the scenes leading up to this Pharmac change?

DARRIN: Yeah so for a bit of history, the ADHD Association started in the early’ 70s as a parent support group, and it was largely Auckland based, and didn’t have very many members. I joined in 2008 when my son was diagnosed with ADHD. And, in 2011, went on their board. And in 2016, by that time I was the chair, we realized that I’m lucky. I do, in my other life, earn good income and able to pile a stack of support into Matthew but what I realized is it didn’t happen for most New Zealanders like this, and nothing was changing. So that’s why we decided to form ADHD New Zealand. We are tiny. We have one employee. But we started to change it. And look, go back to 2016 in speech marks “girls could not get ADHD”. It was the domain of naughty little boys, right? So we’ve had to change all of these attitudes. And to fast forward to today, I’ve kept track of every meeting to get this change. So since 2018 it’s 339 meetings. Step by step by step. Then all of a sudden in 2020 people started taking ADHD New Zealand seriously. Under different definitions we’ve got 30,000-40,000 members, making us the largest community-based ADHD organization in the Southern Hemisphere. And when you have a voice, you can prove that you’ve got that voice, things started to change. And then in 2022 we had hui at Parliament. We were the first not-for-profit to have a hui at Parliament for the day, thanks to Chloe Swarbrick. What was remarkable about that it was every health department like Te Whatu Ora, Pharmac,  Ministry of Health were all there as well as all the colleges. The College of GPs, psychiatrists, the clinical psychologists, and even the police. And what was amazing about the day is we were able to prove how the ADHD community was suffering in terms of the response from the medical sector and how I’ve had it described it in the media as ‘one giant own goal’. And then how we could start to take steps to fix it. And unbelievably government just said “Yes, let’s keep doing it.” And while 2022 to now is two years, it’s remarkable how fast that went. And it’s also remarkable that it’s across two Labour governments under Jacinda, and then Chris Hipkins, and the work continued under Chris Luxon and his government. So the government, the ministers, the respective three Ministers of Health, have continued it.  And in particular of this latest change, Nicola Willis was instrumental and continuing to drive it forward as well, so a lot of work. And I should do a shout out to Pharmac. I know they’re incredibly easy to criticize but they’ve been most incredibly responsive. And we made a few changes last year as well, such as the three-month scripts picked up monthly and things like that. So it’s amazing what they’ve done for us.

JULIE: That’s incredible. And you’ve talked to the ADHD Community, or you gather insights from them too, don’t you? And then you have regular surveys and that I guess helps gather the information in order to push for change. You’ve had a recent ‘adults survey’. Are you able to share any insights or results from that?

DARRIN: So the adult survey we released about four months ago and what it really highlights, yes we know the barriers, we know the Special Authority process is a massive barrier, the need to go private is still an issue, but we’re getting past that. But what it highlights is two other key issues. I think the first is the associated stigma with ADHD is still there. Just under half of people have told their families and workplaces and, as adults, that is because they’re too worried about what could happen if they admit it. And the second issue is there are significant mental health issues and they haven’t gone away. And what we know from overseas research such as in Canada, is suicide attempts in adults is 4:1, those with ADHD versus those without. And in Australia for 12 -18-year-olds it’s 2:1. So I’m really hopeful even if these changes can remove some of that stigma, remove some of those barriers, and then the next thing we’ll do is step into the mental health side.

JULIE: There’s so much work to do but gosh, what remarkable positive change for now, and we absolutely take that win, don’t we. Are there any other concerns or additional needs that you may want to advocate for? Or is there anything that …?

DARRIN: Yeah yeah. So we haven’t finished with changes to the health system, and we’re working hard, and I’m optimistic of a positive announcement next year and that will be the ability for specially trained GPs to diagnose ADHD. So to be clear, they’ll be ideally specially trained, and there’s some who are specially trained now. And then the second thing is they’ll be monitored by associated psychiatrists or clinical psychologists. Now the advantage of that is effectively the wait times and those barriers will remove and people can get the help that they need. And then the second advantage, if approved and if it goes live, what that is doing is really freeing up the psychologists, and clinical psychiatrists, and clinical psychologists, into helping those from our community that may actually really need help. And then, having had two children with ADHD, you can’t talk about ADHD and just hang your head in shame when you look at the education system response. So we’re moving onto that. I have to admit when we started our advocacy, I thought changing the education system would be way easier than changing the health system, which actually has required legislative change. But it turns out the health system is way way easier to change the education. And again that theme of our own goal, if you can help a child that’s neurodiverse, and help a child who has ADHD, then you won’t have the problems when they’re adults. So this is where it starts but it’s a long way to go, yeah.

JULIE: Well the ripple effect is huge. Ripple effect of misdiagnosis or undiagnosis, but also the positive change and so yeah, I’m feeling really good about this. And thank you so much for your time, Darrin. [No problem.] I just wanted to talk to the man who knows it all just to put this podcast out and celebrate.

DARRIN: Yeah and we should take that moment as a country. We are now miles ahead of other countries. And I do media requests from overseas asking how is ADHD in New Zealand treated so much better than some of our counterpart Western countries.

JULIE: Fabulous, fabulous. Okay I will let you go Darrin. [Thank you.] Thank you so much and no doubt we will chat again in the near future.

DARRIN: Yes. Alright, all the best. See you, bye bye.

Alright, all the best. See you, bye bye.

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