Green light for new narcolepsy medication across the UK

Following our update in November 2021, we are now delighted to announce that all four countries of the United Kingdom have agreed to make solriamfetol available for the treatment of excessive daytime sleepiness in adults with narcolepsy for whom modafinil is not effective. This new treatment option also provides a welcome additional avenue for women with narcolepsy using certain types of contraception, the effectiveness of which can be impacted on by using modafinil.

Whilst England, Wales and Northern Ireland chose to adopt the recommendations of the National Institute for Health & Care Excellence (NICE) review from November 2021, the Scottish Medicines Consortium (SMC) has followed a different appraisal process. Over the last few months, Narcolepsy UK has been working with the SMC to articulate the need for this treatment in Scotland. This week, the SMC published its decision to make solriamfetol available within NHS Scotland for this restricted use. This aligns treatment across all UK countries and goes some way to removing the postcode and country lotteries that we face accessing medications across the UK.

“We welcome the SMC’s decision and the committee’s recognition of the need for pragmatism when comparing treatments for rare diseases such as narcolepsy,” says Narcolepsy UK chair Matt O’Neill. “One of the key goals set out in Narcolepsy UK’s charter is to improve access to effective treatment,” he says. “The SMC’s judgement over solriamfetol certainly does this.”

Solriamfetol works by increasing levels of key neurotransmitters in the brain. In clinical trials, the average Epworth Sleepiness Score before treatment was 15, but after receiving solriamfetol the average score dropped to just over 6. In a follow-up paper, solriamfetol made clear improvements to quality-of-life measurements.

For Narcolepsy UK, the SMC’s decision represents the culmination of several years of engagement with the manufacturer Jazz Pharmaceuticals and the relevant approval bodies across the UK. The success in getting solriamfetol available across the UK would not have been possible without the tireless, largely unseen advocacy of the chair of Narcolepsy UK Matt O’Neill, supported by other members of the charity’s board of trustees.

What is solriamfetol (Sunosi®)?

Solriamfetol is a “stimulant” that is used to promote wakefulness and reduce excessive daytime sleepiness. It is marketed under the brand name Sunosi®, a tablet that usually comes in two different strengths: 37.5mg or 75mg. The required dose will vary from patient to patient. For some, a single tablet taken shortly after waking in the morning will be sufficient. For others, it may be necessary to increase the dose (up to 150mg per day). Sunosi® can be taken with or without food and taking this medication too close to bedtime (within nine hours) could cause disruption to night-time sleep.

Solriamfetol is thought to block the reuptake of dopamine and noradrenaline from the synaptic junctions between neurons, thereby increasing the concentration of these wake-promoting neurotransmitters.

Side effects

As with any medication, the drugs used to treat narcolepsy can have side-effects. These can take many forms, including abdominal pain, anxiety, a drop in appetite, headache, irritability and nausea. You should check the Patient Information Leaflet (PIL) in the packaging of your medication for more details and if you experience any of these side-effects (or any not on the PIL) you should consult your doctor or pharmacist. You can also report side effects directly via the Yellow Card Scheme. By reporting side effects, you can help improve the safety of this medicine.

External Links

Jazz Pharmaceuticals

National Institute for Health and Care Excellence (NICE)

Scottish Medicines Consortium

The relevant Detailed Advice Document can be found here and a link to the Decision Explained public information summary can be found here.

Narcolepsy UK Press Enquiries