Harry's Hope Campaign wins fight for Narcolepsy Treatment

Australian mother Tracy White has been on an emotional roller-coaster since January 2011. Her son Harrison, now 7, suffered an Acquired Brain Injury in Jan 2011 after developing Meningoencephalitis. As a result Harrison was left with multiple problems:

Narcolepsy is a sleep disorder that causes excessive sleepiness and frequent daytime sleep attacks.

Narcolepsy is a sleep disorder that causes excessive sleepiness and frequent daytime sleep attacks.

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. 

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 had the potential not only to create addiction but cause long term damage to his body, as well as disrupt his epilepsy, so this is not a suitable option for a first line medication!

A more suitable medicine, Modavigil (Modafinil), was prescribed but at initial doses 200mg/day equated 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!

Unfortunately, the Australian Pharmaceutical Benefits Scheme denied access to the drug for Tracy's son, so Tracy with her husband, found themselves in a very difficult financial position. 

The couple decided to campaign with the GoPetition website and started a petition for their cause to get Modavigil (Modafinil) placed on the Australian Pharmaceutical Benefits Scheme.

Thankfully, Tracy was soon after able to report that, "We were SUCCESSFUL! It is through determination and your unwavering support that such a result was possible, thank you all!"

Tracy has now thanked her supporters publicly, "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."

Hopefully, Tracy's efforts and campaign will also benefit hundreds of other needy children in Australia.