ADHD medication shortage hits Canberrans hard with GPS forced to 'cobble together' prescriptions
Harriet Torres had just celebrated her 42nd birthday when she was diagnosed with attention deficit hyperactivity disorder (ADHD) in 2022.
As her psychiatrist revealed the diagnosis, she burst into tears.
"I kind of knew going in that I was probably going to get a diagnosis, but to have someone actually confirm that was really a powerful thing.
"It turned off a negative voice in my head that had been there my whole life, so it was almost instant."
Ms Torrens, an administrator at the Australian National University, was prescribed medication to help her manage her ADHD traits, which included hyperactivity, inattention and impulsivity.
The drug — a long-acting stimulant called Concerta — had an almost immediate impact.
"It's important to highlight that medication is only one tool, but it has been a very useful tool for me," she said.
"I have both hyperactive and inattentive ADHD, which is tricky, but medication allows me to structure my day and my thoughts better.
For more than two years, it worked beautifully.
Then in February, Ms Torrens's psychiatrist recommended increasing her dose, only for her to find the dosage had become unavailable.
Australia has been in the grips of an ADHD medication shortage since late last year, with the Therapeutic Goods Administration warning it is likely to persist until at least the end of this year.
The causes of the shortages are complex, with manufacturing and supply chain issues playing a part as well as increased demand for the medications across the globe.
Concerta, Ritalin and Teva XR are in the shortest supply in Australia, with Rubifen expected to join that list next month.
Thankfully for Ms Torrens, her general practitioner Laura Chapman had a few options to choose from.
She first tried mixing two drugs that had not been impacted by the shortage, but the side effects were problematic, with Ms Torrens slipping quickly into "a real depression".
A shift to another drug has been much more effective, though it involves Ms Torrens taking a number of tablets across the day rather than one first thing in the morning.
"It has changed my whole routine and it's more expensive, so it's been quite difficult," Ms Torrens said.
Dr Chapman said Ms Torrens's experience was becoming increasingly common, with many of her patients reportedly phoning multiple pharmacies to fill their prescriptions and coming up short.
The shortage has had somewhat of a cascading effect, with drugs becoming harder to get as more people switch their prescriptions from one to another.
Dr Chapman said she felt frustrated at being forced to "cobble together" prescriptions to come up with a mix of available drugs to help her "distressed" patients simply function.
"By that I mean we often need to pivot a person's pharmacological treatment to agents that are different and therefore not ideal.
"So, taking a bit of creative license, which is not always in the patient's best interest."
Dr Chapman said often the solution was more expensive and involved the patient taking a smaller dose of medication multiple times a day, like in Ms Torrens's case.
She said that was particularly onerous for people with ADHD who typically struggle to manage their executive function.
And even then, Dr Chapman said she could not promise there would not be a shortage of the new drugs she prescribed.
General paediatrician Kim Bland said the impact the drug shortage was having on families in Canberra was "heartbreaking", with some parents going without entirely or making compromises like rationing doses to their children.
"They'll give their child medication on Monday, Tuesday and Wednesday and hope they've got enough learning on those days that they can go without their medication on Thursday and Friday," Dr Bland said.
"There are families not giving it in school holidays and on weekends when they normally would, and mums and dads are taking the brunt of that challenge with executive function, memory, focus and emotional regulation because they want to prioritise their child being able to regulate at school.
Dr Bland said she had spoken to parents who had called every pharmacy in the ACT as well as those in towns over the border in New South Wales to find medications, with little luck.
"Some of my families have just worked their way through the first shortage, transitioned to a new medication, only to be told that's going into shortage as well," she said.
"So, they really have nowhere else to go — I'm worried many of them have just given up because there's no options left for them."
For children with ADHD, being unmedicated can have a serious impact on their ability to learn and retain information and lead to significant emotional dysregulation.
Dr Bland said if left untreated over a long period, it could cause such significant disengagement with school that a child's education would suffer long-term.
She said the "free market" was partly to blame, with medications ultimately going to the country willing to pay the most for them.
"But also, only 10 per cent of our medications are made in Australia, and that makes us very vulnerable.
"It's quite a long-term dream, but I would really like to see some kind of buffer where some of these medications could be made here."
In pharmacies across Canberra, a Hunger Games-style battle to secure what stock is available has developed.
ACT Pharmacy Guild branch president and community pharmacist Simon Blacker said ongoing drug shortages since the pandemic had led to a habit of pharmacies buying as much as they could safely store when medications were in stock.
"That obviously means other pharmacies and patients are missing out, and that's the unintended consequence of drug shortages — and we wish it didn't happen, but it's a challenging time.
"It's often described as a Hunger Games effect, but we are in a global economy."
As for Ms Torrens, her new mix of medications is proving effective — and, perhaps just as importantly, available for now.
But it was not lost on her how different her experience could have been.
"I am very fortunate because I have an excellent GP, who I have access to pretty readily," Ms Torrens said.
"The minute I wrote her an email, she was onto it, but I'm really aware that not everyone is in that situation.
"I was also fortunate to have just had an appointment with my psychiatrist, and she had given my GP a lot of scope to support me with adjustments to my prescription.
"If you're waiting months and months to get in to see a psychiatrist, what do you do?"
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Some mornings university student Jaclynn Culham has to break down basic tasks into tiny steps simply to get going for the day. "On bad days, it's awful, it's just awful," Jaclynn, who has been diagnosed with ADHD said. "I tell myself the night before what I'm going to do, but I physically can't do those things. "I have to talk myself through it in steps. "Step one, walk to the door, step two, open the door." While it sometimes seems the number of people being diagnosed with ADHD has exploded, the path to diagnosis is by definition often difficult for those with attention difficulties. Many can quickly become overwhelmed by everyday tasks, let alone complex and drawn-out processes such as the steps needed for diagnosis and medication. Jaclynn welcomes government moves to make this process simpler, but cautions that ADHD is different for every individual. 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Treatment has helped, and she has now switched to studying media and communications and is feeling more on top of things. She supports the government making the process of diagnosis less complicated. In terms of the proposed reforms, she says while she has some reservations, she personally would have benefitted from an earlier diagnosis. Health Minister and Member for Kiera Ryan Park spoke in support of the reforms in parliament. "Over the last two years, the minister for mental health and I have heard from countless families and parents about waiting, sometimes years, to access those diagnostic appointments and to ensure their children get on a path of treatment," Mr Park said. He said under new reforms 1000 GPs will be empowered to provide ongoing prescriptions for ADHD patients while some will also be able to provide diagnosis. He said ADHD is expected to impact around six to 10% of children and adolescents and delays in diagnosis disproportionately disadvantage rural and regional families. Jaclynn hopes pathways will be quicker and easier for others in the future. "I wish it had been available for me. "It would have cost less and been less hassle. "Dealing with the processes involved can be very difficult for people with ADHD. "That's why I put it off for so long. "This will be a lot less pressure." And while Jaclynn now has many more good days than bad she says; "I still have to remind myself I have a neurological disorder, that I'm not just lazy." Some mornings university student Jaclynn Culham has to break down basic tasks into tiny steps simply to get going for the day. "On bad days, it's awful, it's just awful," Jaclynn, who has been diagnosed with ADHD said. "I tell myself the night before what I'm going to do, but I physically can't do those things. "I have to talk myself through it in steps. "Step one, walk to the door, step two, open the door." While it sometimes seems the number of people being diagnosed with ADHD has exploded, the path to diagnosis is by definition often difficult for those with attention difficulties. Many can quickly become overwhelmed by everyday tasks, let alone complex and drawn-out processes such as the steps needed for diagnosis and medication. Jaclynn welcomes government moves to make this process simpler, but cautions that ADHD is different for every individual. "When people think of ADHD they think of forgetfulness or getting distracted, but a lot of what's going on for me is internal frustration," she said. "It's known as 'executive dysfunction'. "You have lists of things to do, you want to get up and go, but because you don't have the motivation, there's no urgency to do it." She said this leads to procrastination and then having to remind herself she is not lazy, it's just part of the condition. "The whole process of my diagnosis was so long and tedious. "The process can feel impossible at times." Jaclynn said when she was filling out the initial form, answering questions to assist with her diagnosis, she was doing fine until she was asked to provide additional information. "I couldn't complete it. "It was something I wanted to do so badly, and was motivated to do it. "Looking back it is just a ridiculous thing the huge process they've given us with no support to complete it." On another occasion, she was asked to photocopy all her primary school reports which caused her a great deal of stress. She said she had sticky notes taped all over her wall to remind her of all the things she needed to do before her appointments. Jaclynn has other friends who missed their appointments completely because they forgot about them. "Everyone's diagnosis journey is going to be slightly different," she said, adding that she was grateful she could have her consultations with her GP and psychiatrist online. "It was much easier for me to not go in person. "I didn't have to think, what time is it on, where is it, where's the train, where do I get off - I would have to think about every aspect of the process." It took five years before Jaclynn was finally diagnosed, which she said came as a relief after years of people saying she seemed to have ADHD. "The first time I heard the term was when I was 13," she said. "I had no idea what that meant. I thought, oh well, that's just me and that's how I act. "I was forgetting things all the time, zoning out of conversations, then sometimes I'd get really excited and more energetic. "I was not doing well at school. "I had always found it frustrating that I wasn't able to do the things that other people found really easy, even domestic chores." Things became more difficult when she started at the University of Wollongong, NSW. "I failed a couple of classes, which really surprised me. "I was actually studying early childhood development, which is also where I learned more about it. "It wasn't a heavy load but I was still struggling." Jaclynn was referred by her GP to a psychiatrist and was lucky to see someone within a few months. "That's much quicker than lots of other people I know," Jaclynn said, saying many were waiting up to nine months for an appointment. She was eventually diagnosed with combined ADHD hyper inattentive disorder. Treatment has helped, and she has now switched to studying media and communications and is feeling more on top of things. She supports the government making the process of diagnosis less complicated. In terms of the proposed reforms, she says while she has some reservations, she personally would have benefitted from an earlier diagnosis. Health Minister and Member for Kiera Ryan Park spoke in support of the reforms in parliament. "Over the last two years, the minister for mental health and I have heard from countless families and parents about waiting, sometimes years, to access those diagnostic appointments and to ensure their children get on a path of treatment," Mr Park said. He said under new reforms 1000 GPs will be empowered to provide ongoing prescriptions for ADHD patients while some will also be able to provide diagnosis. He said ADHD is expected to impact around six to 10% of children and adolescents and delays in diagnosis disproportionately disadvantage rural and regional families. Jaclynn hopes pathways will be quicker and easier for others in the future. "I wish it had been available for me. "It would have cost less and been less hassle. "Dealing with the processes involved can be very difficult for people with ADHD. "That's why I put it off for so long. "This will be a lot less pressure." And while Jaclynn now has many more good days than bad she says; "I still have to remind myself I have a neurological disorder, that I'm not just lazy." Some mornings university student Jaclynn Culham has to break down basic tasks into tiny steps simply to get going for the day. "On bad days, it's awful, it's just awful," Jaclynn, who has been diagnosed with ADHD said. "I tell myself the night before what I'm going to do, but I physically can't do those things. "I have to talk myself through it in steps. "Step one, walk to the door, step two, open the door." While it sometimes seems the number of people being diagnosed with ADHD has exploded, the path to diagnosis is by definition often difficult for those with attention difficulties. Many can quickly become overwhelmed by everyday tasks, let alone complex and drawn-out processes such as the steps needed for diagnosis and medication. Jaclynn welcomes government moves to make this process simpler, but cautions that ADHD is different for every individual. "When people think of ADHD they think of forgetfulness or getting distracted, but a lot of what's going on for me is internal frustration," she said. "It's known as 'executive dysfunction'. "You have lists of things to do, you want to get up and go, but because you don't have the motivation, there's no urgency to do it." She said this leads to procrastination and then having to remind herself she is not lazy, it's just part of the condition. "The whole process of my diagnosis was so long and tedious. "The process can feel impossible at times." Jaclynn said when she was filling out the initial form, answering questions to assist with her diagnosis, she was doing fine until she was asked to provide additional information. "I couldn't complete it. "It was something I wanted to do so badly, and was motivated to do it. "Looking back it is just a ridiculous thing the huge process they've given us with no support to complete it." On another occasion, she was asked to photocopy all her primary school reports which caused her a great deal of stress. She said she had sticky notes taped all over her wall to remind her of all the things she needed to do before her appointments. Jaclynn has other friends who missed their appointments completely because they forgot about them. "Everyone's diagnosis journey is going to be slightly different," she said, adding that she was grateful she could have her consultations with her GP and psychiatrist online. "It was much easier for me to not go in person. "I didn't have to think, what time is it on, where is it, where's the train, where do I get off - I would have to think about every aspect of the process." It took five years before Jaclynn was finally diagnosed, which she said came as a relief after years of people saying she seemed to have ADHD. "The first time I heard the term was when I was 13," she said. "I had no idea what that meant. I thought, oh well, that's just me and that's how I act. "I was forgetting things all the time, zoning out of conversations, then sometimes I'd get really excited and more energetic. "I was not doing well at school. "I had always found it frustrating that I wasn't able to do the things that other people found really easy, even domestic chores." Things became more difficult when she started at the University of Wollongong, NSW. "I failed a couple of classes, which really surprised me. "I was actually studying early childhood development, which is also where I learned more about it. "It wasn't a heavy load but I was still struggling." Jaclynn was referred by her GP to a psychiatrist and was lucky to see someone within a few months. "That's much quicker than lots of other people I know," Jaclynn said, saying many were waiting up to nine months for an appointment. She was eventually diagnosed with combined ADHD hyper inattentive disorder. Treatment has helped, and she has now switched to studying media and communications and is feeling more on top of things. She supports the government making the process of diagnosis less complicated. In terms of the proposed reforms, she says while she has some reservations, she personally would have benefitted from an earlier diagnosis. Health Minister and Member for Kiera Ryan Park spoke in support of the reforms in parliament. "Over the last two years, the minister for mental health and I have heard from countless families and parents about waiting, sometimes years, to access those diagnostic appointments and to ensure their children get on a path of treatment," Mr Park said. He said under new reforms 1000 GPs will be empowered to provide ongoing prescriptions for ADHD patients while some will also be able to provide diagnosis. He said ADHD is expected to impact around six to 10% of children and adolescents and delays in diagnosis disproportionately disadvantage rural and regional families. Jaclynn hopes pathways will be quicker and easier for others in the future. "I wish it had been available for me. "It would have cost less and been less hassle. "Dealing with the processes involved can be very difficult for people with ADHD. "That's why I put it off for so long. "This will be a lot less pressure." And while Jaclynn now has many more good days than bad she says; "I still have to remind myself I have a neurological disorder, that I'm not just lazy." Some mornings university student Jaclynn Culham has to break down basic tasks into tiny steps simply to get going for the day. "On bad days, it's awful, it's just awful," Jaclynn, who has been diagnosed with ADHD said. "I tell myself the night before what I'm going to do, but I physically can't do those things. "I have to talk myself through it in steps. "Step one, walk to the door, step two, open the door." While it sometimes seems the number of people being diagnosed with ADHD has exploded, the path to diagnosis is by definition often difficult for those with attention difficulties. Many can quickly become overwhelmed by everyday tasks, let alone complex and drawn-out processes such as the steps needed for diagnosis and medication. Jaclynn welcomes government moves to make this process simpler, but cautions that ADHD is different for every individual. "When people think of ADHD they think of forgetfulness or getting distracted, but a lot of what's going on for me is internal frustration," she said. "It's known as 'executive dysfunction'. "You have lists of things to do, you want to get up and go, but because you don't have the motivation, there's no urgency to do it." She said this leads to procrastination and then having to remind herself she is not lazy, it's just part of the condition. "The whole process of my diagnosis was so long and tedious. "The process can feel impossible at times." Jaclynn said when she was filling out the initial form, answering questions to assist with her diagnosis, she was doing fine until she was asked to provide additional information. "I couldn't complete it. "It was something I wanted to do so badly, and was motivated to do it. "Looking back it is just a ridiculous thing the huge process they've given us with no support to complete it." On another occasion, she was asked to photocopy all her primary school reports which caused her a great deal of stress. She said she had sticky notes taped all over her wall to remind her of all the things she needed to do before her appointments. Jaclynn has other friends who missed their appointments completely because they forgot about them. "Everyone's diagnosis journey is going to be slightly different," she said, adding that she was grateful she could have her consultations with her GP and psychiatrist online. "It was much easier for me to not go in person. "I didn't have to think, what time is it on, where is it, where's the train, where do I get off - I would have to think about every aspect of the process." It took five years before Jaclynn was finally diagnosed, which she said came as a relief after years of people saying she seemed to have ADHD. "The first time I heard the term was when I was 13," she said. "I had no idea what that meant. I thought, oh well, that's just me and that's how I act. "I was forgetting things all the time, zoning out of conversations, then sometimes I'd get really excited and more energetic. "I was not doing well at school. "I had always found it frustrating that I wasn't able to do the things that other people found really easy, even domestic chores." Things became more difficult when she started at the University of Wollongong, NSW. "I failed a couple of classes, which really surprised me. "I was actually studying early childhood development, which is also where I learned more about it. "It wasn't a heavy load but I was still struggling." Jaclynn was referred by her GP to a psychiatrist and was lucky to see someone within a few months. "That's much quicker than lots of other people I know," Jaclynn said, saying many were waiting up to nine months for an appointment. She was eventually diagnosed with combined ADHD hyper inattentive disorder. Treatment has helped, and she has now switched to studying media and communications and is feeling more on top of things. She supports the government making the process of diagnosis less complicated. In terms of the proposed reforms, she says while she has some reservations, she personally would have benefitted from an earlier diagnosis. Health Minister and Member for Kiera Ryan Park spoke in support of the reforms in parliament. "Over the last two years, the minister for mental health and I have heard from countless families and parents about waiting, sometimes years, to access those diagnostic appointments and to ensure their children get on a path of treatment," Mr Park said. He said under new reforms 1000 GPs will be empowered to provide ongoing prescriptions for ADHD patients while some will also be able to provide diagnosis. He said ADHD is expected to impact around six to 10% of children and adolescents and delays in diagnosis disproportionately disadvantage rural and regional families. Jaclynn hopes pathways will be quicker and easier for others in the future. "I wish it had been available for me. "It would have cost less and been less hassle. "Dealing with the processes involved can be very difficult for people with ADHD. "That's why I put it off for so long. "This will be a lot less pressure." And while Jaclynn now has many more good days than bad she says; "I still have to remind myself I have a neurological disorder, that I'm not just lazy."
