Harry's Hope

*****UPDATE: A sincere thanks to all who supported my son and family in gaining access to Modavigil on the PBS as a first line treatment for Narcolepsy. We were SUCCESSFUL! It is through determination and your unwavering support that such a result was possible, thank you all!

~ Your friend, Tracy

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My son Harrison who is 6, suffered an Acquired Brain Injury in Jan 2011 after developing Meningoencephalitis.

As a result Harrison has been left with:

Severe acquired brain injury
Mild intellectual disability
Fine/Gross motor delay
Severe speech and language disorder
Epilepsy, and
Narcolepsy with Partial Cataplexy secondary to his brain injury.

My husband is in the Defence Force and has been deployed overseas for approximately 12 out of the last 18 months so that we were able to afford the steep medical costs incurred as a result of Harry's illness. Extensive waiting lists in our public sector forced us to fund in total Harry's rehabilitation costs which included:

Speech Therapy
Occupational Therapy
Physiotherapy
Medications
Hospitalisations
Testing
Early Intervention Therapy
Inclusive Education, the list is on-going and relentless!

Research suggests persons with brain injuries incur a higher rate of addiction, therefore, feeding amphetamines (Which is the first line treatment for Narcolepsy) to a 6 year old across his lifetime has the potential not only to create addiction but cause long term damage to his body, as well as disrupt his epilepsy, this is not a suitable option for a first line medication!

The medication at present initial doses 200mg/day equates to $170 per 30 days, or $2068 per year which will increase to approx $4136 per year at the standard recommended dose of 400mg/day. In total this across his lifetime (approx 78 years given the average lifespan of an Australian Male) could mean an expense of nearly $300 000!

Westmead Childrens Hospital pharmacy staff agreed to subsidise this medication and this was confirmed and an outpatient script was sent to myself, however, when I submitted this for processing on Tuesday 7 August an amendment was required for the dosage level. I left the script in the care of the Pharmacy staff awaiting a follow up. When I rang on Thursday and spoke to staff the amendment was not done and we were subsequently informed that normal practices for authorising medication had not been conducted and they would not issue my son his medication. Kindly, I was given advice to find other channels of support, for example the media or social welfare! You could only imagine my heartache and dismay at this situation!

We have already paid for the first couple of months for our son and it has been truly amazing! And we have noticed the following benefits:

Less fatigue
Improved Behaviours with reduced Impulsivity/Disinhibition
Improved Communication
Social Skills
Concentration
Improved cognition

I can't begin to tell you what this medication has done for our son and our family, our Dr expressed that this medication could indeed mark a turning point in Harry's very complex Narcolepsy and Brain Injury outlook, in particular with behaviour and cognition. But how can an average single income family in Sydney continue with this level of expense when we have a healthcare system that is meant to be designed to support our community?

The most absurd part of this is that we have funded everything privately and personally at every turn so that he has the opportunity to become a tax paying citizen, however PBS cutbacks would rather save money, than give him the medication that could help enable him to lead a normal, fulfilling life rather than that of a life long disability support pensioner!

We have sold our home, sent my husband overseas with the Defence Force to serve our country, leaving my children and I minus an integral support, all so that we can continue to provide for our sons medical, schooling and living costs and for that of his 3 siblings. We have used our private health insurance always to reduce the financial burden on the public health care system, but it would seem that despite our efforts no one wants to help my family!

I hope that by bringing this to your attention will enable you to help Harry to get his long term medication accepted through the PBS, so that he has an opportunity to achieve all that he is possible of achieving and so that he has the right to a choice in his future and not be pushed aside!