Updated: Jul 24, 2019
On 23 November I wrote a post Inquiry into Sleep Health Awareness in Australia. That announced that the House of Representatives Standing Committee on Health, Aged Care and Sport had commenced an Inquiry into Sleep Health Awareness in Australia. The Committee invited submissions from the public to its inquiry. As the Executive Director of Hypersomnolence Australia and Director of Sleep Disorders Australia, I was invited to the public hearing that was held at Parliament House, Canberra on 11th February to give an opening statement and to take part in this very important discussion.
This Federal government inquiry is the first major look at the way sleep issues impact on our lives, the affect they have on society, and how the Australian Health system is structured to deal with these issues. The session at Parliament House Canberra was the 4th in a series. Hearings were also held in Perth, Sydney and Melbourne. The hearings were based largely on the submissions the Government received from the public. There were representatives from health services, various government and charitable bodies and individuals giving personal testimony of the impact sleep disorders have on their lives, and how they managed them.
The session opened with each of the professional attendees giving brief statements. The initial one by Prof Grunstein set the tone by pointing out that sleep medicine in Australia is not a specialty by itself, and that the focus was on respiratory conditions, rather than sleep as a whole. This point was commented on a number of times by others and the committee seemed to take on board the lack of seriousness given to sleep issues in society. In addition, it was pointed out that due to the lack of sleep specialists with a wide range of training and education in all sleep disorders people with non-respiratory sleep disorders are disadvantaged. Also, people living in rural areas get a poorer service, and that being poor meant less access to the services that were available, and that being poor generally meant that you were more susceptible to having a sleep disorder. It was noted that these are particular issues for the Aboriginal population.
Other issues raised included the impact sleep disorders have in the workplace, veterans with PTSD presenting sleep issues and the lack of education of sleep disorders with the public, and within the medical arena.
On a positive note it was acknowledged that there are some good treatments, like CPAP for Sleep Apnea, and CBT for insomnia, but that these need a better national rollout, and that there needs to be better financial support for the provision of CPAP devices to those who could benefit from them.
Sleep deprivation was also mentioned, and the impact this has on Carers too, who often have very disrupted night time sleep, with its knock-on effects.
The points I put across, included the problems with the closure of sleep clinics and the impact this is having, the lack of support for people with sleep disorders including access to medications, and like Prof Grunstein stated, the lack of education within the medical community on sleep disorders and the impact it has on sufferers. The Public Health Association echoed my thoughts on the lack of education and awareness.
Further discussions were had on the closure of sleep centres; the Dept of Health seemed poorly prepared on this issue and lacked an understanding of its impact. Dr Barnes, of the ASA, highlighted the impact this has on Narcolepsy and disorders of hypersomnolence and paediatric patients.
There was much discussion around the access to the right medication and the PBS view that amphetamines should be the first line of medication for Narcolepsy. It was noted with concern that this decision was based purely on cost. Also, the position on Xyrem was highlighted where it isn’t approved by the TGA for general use because of a bureaucratic position on orphan status. It was noted that the TGA knocked back an application to have Xyrem approved as an orphan drug because they didn’t accept that Narcolepsy is an orphan disease. I was asked out the affordability of medications and the impact of this. I explained that the cost of Xyrem had a huge impact on the whole family because it cost $15,000-$20,000 depending on dose. I also said that there is no PBS access to modafinil without a narcolepsy diagnosis which means there is no access for other disorders that experience excessive daytime sleepiness including Sleep Apnea or for shift work disorder sufferers and that there needs to be. I explained to the committee that if you do not have private health insurance the cost of CPAP can be very expensive and that there is no federal funding assistance. Prof Hillman weighed in here with support for a more general use of modafinil as the PBS position is 10 years out of date. Likewise, that CPAP provision should be a federal issue not a state by state responsibility. I have since sent further advice to the Committee explaining the need to have medications approved on the PBS for Idiopathic Hypersomnia independent of Narcolepsy. This advice outlined the problems that occur when these disorders are lumped under one umbrella. One example is that the TGA does not accept Narcolepsy as an orphan disease. If everyone is diagnosed with Narcolepsy simply because they can pass the PBS criteria for prescribing PBS listed medications for narcolepsy it gives the false impression of the number of people who actually have narcolepsy. I wrote, "Whether doctors are labeling the EDS in sleep apnea or difficult to classify cases of EDS as idiopathic hypersomnia which end up on the record as narcolepsy or genuine cases of idiopathic hypersomnia are being ‘coded’ as narcolepsy, it creates many problems. It perpetuates ignorance in relation to the "genuine" diagnosis and it also renders any epidemiological study ‘flawed’. Australian government authorities (including the Therapeutic Goods Administration) rely on statistics from Australia’s PBS and MBS yet these records do not reflect the true prevalence of idiopathic hypersomnia and narcolepsy. Therefore, one could get a false impression of an epidemic of "narcolepsy" when in fact if you were to isolate the true narcoleptics the number would be quite small. It also creates problems when trying to advocate for medications to treat idiopathic hypersomnia and narcolepsy (narcolepsy cannot be considered an orphan disease when there are thousands and thousands of people diagnosed with it). Officially there are no medications on the PBS for idiopathic hypersomnia and people with idiopathic hypersomnia cannot access schedule 8 medications without a narcolepsy diagnosis, this needs to change and there is no reason it shouldn’t."
A lot of the follow-on discussions were about the socio-economic access to care and treatment and the effectiveness of catching and treating these illnesses early. One major point was that the successful treatment of Sleep Apnea did NOT have a cost to Australian society; in fact, it saved society a lot of money overall even with the average levels of compliance, and solutions like this were good for the health system. However, it is suspected that many people with Sleep Apnea are undiagnosed/untreated.
A key point that was glossed over was the Department of Health’s lack of a plan for sleep health, and the lack of data on waiting lists and times. The DoH were quick to move on here, though I think the committee will be less forgiving in its final report.
Discussions turned to the number of sleep professionals and training and their position, or lack of it in the medical community and also ways these issues can be addressed. There was also the question of research, or the total lack of it in the hypersomnolence area, and the lack of data and educated clinicians and researchers to support studies.
The latter time was spent on discussing sleep in society, the fragmented messages, the impact on young people and the lack of a national programme to educate people on the benefits of good sleep. The British have recognised that sleep is more important to young people’s development than anything else and have programmes in place to teach this to young people. Something to consider when developing a sleep health plan.
Finally, when the main session had finished, I and four other ladies with narcolepsy who had been invited to the hearing, gave our own personal accounts on the impact of sleep disorders on our lives. It is a shame that there had not been submissions from people with other sleep disorders, or sleep issues particularly Sleep Apnea, Idiopathic Hypersomnia and Restless Legs Syndrome so that the committee could understand the seriousness of these disorders and the impact they have on people’s lives. Pam and Monica (on behalf of their teenage daughters), and Fiona and Laura did a wonderful job representing people with Narcolepsy and Cataplexy by telling the committee what their life is like. I spoke about my experience with Idiopathic Hypersomnia, the length of time to diagnosis and the impact that had on me over many years and that medication has not given me a “normal” life. I said that I’m tired of hearing the same issues from others time and time again. I pointed out that diagnosed or not, we are still struggling. The system clearly needs to change in many ways. I hope this committee will make recommendations that go towards changing things for all people with sleep disorders so that I will not continue to hear from people in despair over the inadequacies of sleep health services, to give hope to sufferers of sleep disorders and give access to support and medication to all.
You can read the full transcript of the hearing here:
Image is of ASA President Peter Eastwood and Committee Chair Trent Zimmerman MP from Trent Zimmerman's Facebook page