Treatment resistant narcolepsy

Hi my name is Jason. Thank you for taking a moment out of your day to listen to my story.

I am fundraising for a medical condition for which there is no cure.

I have narcolepsy, a condition where an autoimmune condition destroyed the cells in my brain which produce the hormones that regulate my sleep wake cycle. What this means is that I do not get restorative sleep and I am constantly having to manage debilitating fatigue and sleepiness. Some studies have likened it to a normal person being up for 72 hours without sleep.

In the United States and Europe a medication called xyrem is first line treatment for narcolepsy. It regulates restorative night time sleep and treats the cause of the condition, rather than the symptoms.

Unfortunately in Australia this medication is not approved for narcolepsy or any other condition. The only medications we have aim to treat the symptoms rather than the cause. I therefore resort to taking prescription stimulants and ineffective sleep aids, blue light therapy, strategic napping and melatonin in an effort to regulate my sleep wake cycle. This is no longer proving even a partially effective solution due to the side effect profiles of the medications.

I have been advised by doctors the only option left is this medication, which they will obtain a special permit for. The pharmaceutical company, while supportive, are not able to offer me compassionate supply and I completely understand this, they cannot do this for everyone and the medication is not even approved to be prescribed here. The cost of accessing it through the special access scheme is therefore AUD $7,000 per year. I am completing my PhD and do not have that kind of funds readily available.

The Australian Government have not acted on my pleas for proactive action, even though the 2019 Australian Parliamentary report in to Sleep Disorders in Australia recommended they work with industry to find a tenable solution so people can access this medication. As well, narcolepsy is not considered a disability in Australia, even though the legal experts estimate a it could effect up to 80% of a person's function. This means I am ineligible for funding under Australia's National Disability Insurance Scheme.

The hard thing for me is that this disorder has held up me completing my PhD in a health related field that could help thousands of people world wide who suffer with chronic low back pain. My vision when I set out to complete this in 2012 has been slowly eroded by narcolepsy. Nevertheless I continue to persist as I know the intervention could potentially help thousands of people and I understand what it is like to be told there are minimal treatment options for your condition.

If I could raise even half of this, it would make an amazing difference not only to me but also to my family.

This is a rare but hidden disease I and others struggle with daily. About 1 in 100,000 people have this disorder.

On a final note, it is a long held myth that sleep apnea effects only those who are overweight. If you do experience unexplained sleepiness or are a heavy snorer, I would please seek assessment with a sleep physician as a matter of urgency. I have a healthy body mass index, but as part of the narcolepsy, my airways do not remain patent at night and I was formally diagnosed with sleep apnea which is now thankfully controlled with CPAP.