Narcolepsy is a chronic neurological condition that seriously affects the basic human sleep function of about 200,000 people in the USA and 3 million people worldwide, which is about 1 in 2,000 of the population. It affects the brains’ ability to regulate the normal sleep-wake cycle. This leads to symptoms such as disturbed night-time sleep and excessive sleepiness throughout the day, cataplexy (sudden loss of muscle tone), and other related problems.

Effective and approved medication (particularly modafinil (Provigil) and sodium oxybate could be available for people with narcolepsy in the USA but many physicians across the country routinely “blacklist” or deny patients this medication they need by stating it is either [in their opinion] “not cost-effective” or by reference to the irrelevant consideration of how it is sometimes abused by people who don’t have narcolepsy.

We believe the right to access effective medication is a fundamental human right. It should not be down to the judgment of either an accountant or a pharmacist to deny an individual the right of access to treatment that could see them function in society as either a family member, work colleague or simply a friend to others. We believe that clinical doctors are in the best position to judge the most effective medication and in consultation with their patient, their recommendation as to medication should be given priority.

Without your help, people of every ethnicity, gender, social class and age-group will continue to be denied access to medication that is defined as the primary effective treatment for Narcolepsy.