Help improve the lives of adults diagnosed with ADHD over the age of 18

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My name is Rachel. I am a 31-year-old full-time nursing student and a Mum, and I was diagnosed at 30 with ADHD. My fellow advocate Lou Brown is also a member of the ADHD tribe. Lou was diagnosed with ADHD at the age of 47 when her son was diagnosed. Coincidently, Lou is a non-practicing registered nurse. She is also an ADHD coach & consultant, the author of the blog Thriving with ADHD and a tireless advocate for the ADHD community.

In conjunction with Lou, I am circulating this petition to gain support for long-acting stimulant medication and atomoxetine to be available on the PBS to adults diagnosed with ADHD over the age of 18. This initiative is likely to significantly improve the lives of adults who live with ADHD and financially benefit the Australian community.

We would be grateful for your support in bringing the government’s attention to this matter – please sign this petition.


My personal story

As a young child I was loud, talkative, excitable and energetic, and could never sit still. I was also very impulsive, highly sensitive and prone to emotional outbursts.

As you can imagine these traits were not exactly ideal in a school environment and as a result, I often found myself in trouble. My school reports are full of comments such as ‘Rachel is easily distracted and often distracts others, ‘Rachel speaks at inappropriate times,’ and ‘if Rachel just applied herself more.’

Although my parents were concerned, they attributed my behaviour to my exuberant personality and thought I would grow out of it, as did our family doctor. However, I didn’t and by adolescence I really started to struggle. My parents took me to the doctor to see if there was an underlying reason for my struggles. The doctor diagnosed my challenges as being hormonal in original, and commenced me on the contraceptive pill. It made no difference.

Over the years I continued to struggle, and despite my best efforts I experienced constant disappointment and failure. Such as when I tried to study but I couldn’t seem to concentrate and function like everyone else. As a result, my self-esteem suffered and I stopped wanting to be me. I also began to binge eat as a way of coping.

During this time, I frequently presented to the doctor in the hope of finding answers but was repeatedly misdiagnosed. After being treated for anxiety and depression for 12 years I was finally correctly diagnosed with ADHD, and that’s when my life started to improve for the better.

At last, with ADHD medication in line with professional treatment I was able to focus and concentrate, to stay on track and to finish tasks to completion, and I was able to be more productive without suffering from exhaustion. I began to achieve my goals and to feel more positive about myself, about my abilities and about my life.

When I first started taking medication I was commenced on immediate release stimulant medication. The immediate release medication worked extremely well but as the medication wore off I really struggled with my mood crashing. It was like I was fully functioning one minute, then an emotional mess the next, so much so that at one stage I considered ceasing it.

To combat these side effects my psychiatrist suggested I try long-acting stimulant medication, which I did. I found that this formulation of medication suited me much better as my mood stabilised. I was also able to function consistently over the course of 12 hours which was brilliant!

There is one problem. While short acting stimulant medication is subsidised by the PBS for adults who have been diagnosed with ADHD over the age of 18, long-acting medication is not. As a fulltime student with three children and a limited earning capacity, this means I have no choice but to pay $120 per month if I want to access the stimulant medication formulation that works best for me. The one that reduces my ADHD symptoms, enables me to function successfully and improves my quality of life, without any accompanying horrendous side effects.

The fact I was not diagnosed with ADHD until adulthood is not something that I had any control over, so why should my family be financially disadvantaged by the current PBS guidelines? And why should the families of other adults who find themselves in the same situation be disadvantaged?

This disadvantage needs to be rectified. All adults with ADHD deserved to assess the ADHD medication that works best for them on the PBS so they can function to their best ability and contribute to society in rewarding way.

Gratefully, thanks to my ADHD diagnosis and to medication treatment, I have nearly completed studies to become an enrolled nurse and have been recently awarded a scholarship towards my study.


What the research suggests

Attention Deficit Hyperactivity Disorder (ADHD) is a complex neurobiological disorder which affects an individual’s ability to regulate their thoughts, words, actions and emotions. Symptoms of the disorder in adults can include hyperactivity or restlessness, impulsive behaviour, poor ability to focus and stay on task, challenges with planning and prioritising, and difficulty tolerating boredom and frustration.

Research suggests the potential consequences of untreated or poorly treated ADHD in adults are significant. They include the risk of:

  • co-morbid mental health challenges including anxiety and depression, alcohol and substance abuse issues, and eating disorders
  • physical health challenges including coronary heart disease, sleeping problems, migraines and dental caries
  • relationship and marriage breakdown
  • negative occupational outcomes and loss of employment
  • car accidents, dental trauma, traumatic brain injury and premature death from accidents
  • self-harm and suicidal ideation, attempts and completion
  • violence, criminality and incarceration
  • reduced quality of life
  • reduced life expectancy.

(Barkley & Fischer, 2018; Franke et al., 2018).

The link between ADHD and the associated above risks, as well as the significant financial impact of these risks, is evident when examining the association between ADHD and criminality.

In their metanalysis of forty-two studies examining the prevalence of ADHD in incarcerated populations, Young, et al. (2014) found the prevalence of ADHD in prison populations to be around 30% in youth prison populations and 26% in adult prison population. Moore, et al. (2013) when screening prisoners in four NSW correctional facilities found 35% of the sample screened positive for adult ADHD, and 17% met criteria for a full diagnosis with substance abuse and psychiatric comorbidity common. Prisoners identifying as Aboriginal were also found to be significantly more likely to have an ADHD diagnosis (Moore, et al. 2013).

Moore, et al. (2013) also established the cost of funding police, legal aid and prosecutors, courts, prisons and community corrections, community health and hospitals, public and community housing and Centrelink at around $1 million a year per individual with complex needs and in high institutional contact.

Reducing the symptoms experienced by adults with ADHD and the accompanying functional impairment that results from their symptoms has been shown to reduce the potential risks associated with the disorder. Furthermore, symptom reduction improves the quality of life and life expectancy of adults with the disorder and reduces the financial burden that untreated ADHD places on health care systems, employers, police and prisons (Matza, Paramore & Prasad, 2005).

Research suggests ADHD medication can have a significant positive impact on the lives of adults with ADHD (Faraone & Glatt, 2010; Frederiksen et al., 2014; Franke et al. 2018; Fredriksen & Peleikis, 2016; Torgersen, Gjervan & Rasmussen, 2008).

For example, Frederiksen et al. (2014) examined the effectiveness of long-term stimulant and non-stimulant medication in adult ADHD including dose, side-effects and comorbidity in a clinical setting. The results of their study suggest:

  • Adults with ADHD who continue taking ADHD medication in the long-term experience sustained significant improvement in both inattentive and/or hyperactively/impulsivity symptoms in comparison to adults with ADHD who do not take or discontinue medication.
  • Long-term medication compliance significantly reduces ADHD symptoms, and improves everyday function and mental distress.

One can extrapolate from the available studies that ADHD medication also reduces the likelihood of criminal related risks associated with the disorder as well as their financial impact. This assertion is supported by  a number of international studies:

  • A large register-based Swedish study of adults with ADHD found that treatment with ADHD medication significantly reduces the risk of criminality (Lichtenstein et al., 2012).
  • A Swedish register-based study found that adult males with ADHD were 58% less likely to be involved in serious traffic accidents during periods when they were medicated, compared to periods when they were not medicated (Chang et al., 2014a). As US study based on individuals with ADHD found similar results among both males and females (Chang et al., 2017).

The National Institute for Health and Clinical Excellence (NICE) guidelines recommend pharmacotherapy be used as the first-line treatment for adult ADHD in the absence of contraindicated co-existing conditions (NICE, 2018). Stimulant medications are considered to be the first-choice pharmacological treatment option as they tend to result in the most significant reduction of symptoms (NICE, 2018). The second-line choice of medication for ADHD in adults is usually atomoxetine (NICE, 2018).

Randomised placebo-controlled clinical trials and meta-analyses convincingly suggest both stimulant and non-stimulant medications are effective and safe of when used to treat ADHD in adults (Fredriksen, Halmøy, Faraone, & Haavik, 2013; Franke et al., 2018). Stimulant medications come in both immediate-release formulations as well as long-acting formulations.

In Australia the immediate-release medication options available to treat ADHD include methylphenidate (Ritalin) and dexamphetamine sulphate (Aspen Dexamfetamine, Dexamfetamine Sulfate [Sigma]).

The long-acting medication options available to treat ADHD include lisdexamfetamine dimesilate (Vyvanse) and methylphenidate hydrochloride (Ritalin LA and Concerta).

Whilst many adults prefer immediate-release medication formulations, just as many prefer long-acting formulations (Frederiksen et al., 2014). When long-acting medication formulations are favoured it tends to be because they provide longer and more consistent symptom relief, while at the same time reducing the occurrence and severity of rebound symptoms, which makes them more tolerable.

Non-stimulant medication is used in the treatment of adult ADHD when intolerance to stimulant medication is present or when an individual has a co-existing condition in which stimulant medication is contraindicated.

In Australia the non-stimulant medication options available to treat ADHD include atomoxetine (Strattera).

Currently, the 2018 Australian Pharmaceutical Benefits Scheme (PBS) drug utilisation sub-committee report states that subsidy of long-acting stimulant medication and atomoxetine “is limited to patients diagnosed between the ages of 6 and 18 years of age inclusive.” Therefore, the guidelines exclude anyone diagnosed with ADHD as an adult from accessing these medications at a subsidised price.

As touched on in Rachel’s story, those diagnosed with ADHD after the age of 18 who gain greater symptom relief and improved functioning from long-acting stimulant medication formulas or atomoxetine are forced to pay full price for their medication. Those adults who do not have the financial means to purchase a long-acting medication or atomoxetine have no option but to take a medication formulation that does not reduce their symptoms or improve their daily functioning to the same degree as their preferred long-acting medication option would. If these adults do not tolerate the immediate-release formulation available to them, they are more likely to terminate their medication usage.

We know that adults with untreated ADHD have poorer outcomes in life: A systematic review of both childhood and adult studies found that individuals with ADHD which was left untreated had poorer long-term outcomes compared to treated individuals in several major categories. These included academic, antisocial behaviour, driving, non-medicinal drug use/addictive behaviour, obesity, occupation, services use, self-esteem, and social function outcomes (Shaw et al., 2012). Therefore, it is vital that all adults with ADHD, regardless of their age at diagnosis, have access to the medications that work best for them.

We encourage Shire, Novartis, Janssen-Cilag and Apotex to lodge applications seeking PBS approval for lisdexamfetamine dimesilate, methylphenidate hydrochloride and atomoxetine, and for the Department of Health to approve their availability on the PBS for adults who are diagnosed with ADHD after the age of 18.

We would be grateful for your support in bringing the government’s attention to this matter – please sign this petition.

Thank you, Lou Brown.


Call to action

The Pharmaceutical Benefits Advisory Committee (PBAC) is currently giving notice that it is welcoming comments from a personal or group perspective. We urge all consumers and professionals to submit an online comment or submission to the PBAC re the need for long-acting stimulant medication and atomoxetine to be available on the PBS to adults diagnosed with ADHD over the age of 18.

Submissions and online comments are open from May 1st 2019 until 12th June 2019 and can be made on their website or by mail (PBAC Secretariat [MDP 952], Department of Health and Ageing, GPO Box 9848, Canberra ACT 2601) fax ([02] 6289 4175).

 Joy Toll, ADHD Foundation Limited.


Note:
any donations should be forwarded directly to one of the ADHD peek bodies.


References:

Barkley, R.A. & Fischer, M. (2018). Hyperactive child syndrome and estimated life expectancy at young adult follow-up: The role of adhd persistence and other potential predictors. Journal of Attention Disorders, 1-17.

Epstein T., Patsopoulos N.A., Weiser M. (2014). Immediate-release methylphenidate for attention deficit hyperactivity disorder (ADHD) in adults. Cochrane Database of Systematic Reviews, Issue 9. Art. No.: CD005041.

Faraone, S.V, & Glatt, S.J. (2010). A comparison of the efficacy of medications for adult attention-deficit/hyperactivity disorder using meta-analysis of effect sizes. Journal of Clinical Psychiatry, 71, 754-63.

Franke, B., Michelini, G., Asherson, P., Banaschewski, T., Bilbow, A., Buitelaar, J. K., Cormand, B., Faraone, S. V., Ginsberg, Y., Haavik, J., Kuntsi, J., Larsson, H., Lesch, K. P., Ramos-Quiroga, J. A., Réthelyi, J. M., Ribases, M., … Reif, A. (2018). Live fast, die young? A review on the developmental trajectories of ADHD across the lifespan. European neuropsychopharmacology: the journal of the European College of Neuropsychopharmacology, 28(10), 1059-1088.

Fredriksen, M., Dahl, A.A., Martinsen, E.W., Klungsøyr, O., Haavik, J., & Peleikis D.E. (2014). Effectiveness of one-year pharmacological treatment of adult attention-deficit/hyperactivity disorder (ADHD): an open-label prospective study of time in treatment, dose, side-effects and comorbidity. European Neuropsychopharmacology, 24(2),1873-1884.

Fredriksen, M., Halmøy, A., Faraone, S.V., Haavik, J. (2013). Long-term efficacy and safety of treatment with stimulants and atomoxetine in adult ADHD: a review of controlled and naturalistic studies. European Neuropsychopharmacoly, 23(6):508-27

Fredriksen, M. & Peleikis, D. E. (2016). Long-Term pharmacotherapy of adults with attention deficit hyperactivity eisorder: A literature review and clinical study. Basic & Clinical Pharmacology & Toxicology, 118, 23-31.

Matza, L. S., Paramore, C., & Prasad, M. (2005). A review of the economic burden of ADHD. Cost effectiveness and resource allocation: C/E, 3, 5. doi:10.1186/1478-7547-3-5

Moore, E., Sunjic, S., Kaye, S., Archer, V., Indig, D. Adult ADHD Among NSW Prisoners: Prevalence and Psychiatric Comorbidity. Journal of Attention Disorders, published online 17 October 2013, Sage Publications.

National Institute for Health and Clinical Excellence (2018). Attention deficit hyperactivity disorder. Diagnosis and management). NICE clinical guideline NG87. Manchester.

Pharmaceutical Benefits Scheme: Drug utilisation sub-committee  (2018). Attention Deficit Hyperactivity Disorder: Utilisation Analysis. May 2018. http://www.pbs.gov.au/info/industry/listing/participants/public-release-docs/2018-05/attention-deficit-hyperactivity-disorder

Shaw, M., Hodgkins, P., Caci, H., Young, S., Kahle, J., Woods, A. G., Arnold, L. E. (2012). A systematic review and analysis of long-term outcomes in attention deficit hyperactivity disorder: effects of treatment and non-treatment. BMC medicine, 10, 99. doi:10.1186/1741-7015-10-99

Torgersen T, Gjervan B, Rasmussen K. (2008). Treatment of adult ADHD: is current knowledge useful to clinicians? Neuropsychiatric Disease and Treatment, 177-86.

Young, S., Moss, D., Sedgwick, O., Fridman, M., Hodgkins, P. (2014). A meta-analysis of the prevalence of attention deficit hyperactivity disorder in incarcerated populations. Psychological Medicine. Cambridge University Press.