Both NICE-commissioned Dravet therapies cleared the ordinary £20,000-30,000/QALY bar via standard Technology Appraisal, not the £100,000-300,000/QALY HSS threshold reserved for ultra-rare disease, and that is the ceiling any new entrant inherits.
NICE routed both cannabidiol (Epidiolex, TA614, 2019) and fenfluramine (Fintepla, TA808, 2022) through its standard Technology Appraisal process rather than the Highly Specialised Services pathway reserved for ultra-rare conditions. That distinction sets the cost-effectiveness bar: the ordinary £20,000 to £30,000 per QALY threshold applied to both assessments, not the £100,000 to £300,000 per QALY range used for HSS-designated technologies. Post-PAS, cannabidiol costs the NHS an estimated £15,000 to £25,000 per patient per year; fenfluramine costs £30,000 to £50,000 including cardiac monitoring. Both Patient Access Scheme discounts remain confidential, and both agents cleared the same standard bar a new entrant will also have to clear.
Fenfluramine's price embeds a real monitoring cost. The Fintepla Cardiac Monitoring Scheme requires echocardiography every six months, monthly blood pressure checks, and annual ECG, at an estimated £2,000 to £4,000 per patient per year, reimbursed by UCB under the PAS terms. Combined NHS annual Dravet drug spend across roughly 400 to 500 patients totals £9 million to £16 million: cannabidiol for the 50 to 60% of patients on first-line therapy, fenfluramine for the 30 to 40% who step up after an inadequate CBD response. That is a modest total budget for a standard TA commissioning decision, and it is precisely why the treatment algorithm is now considered closed. Any new Dravet therapy needs to demonstrate significant additional seizure reduction or a meaningful tolerability advantage over the combined background to secure its own NICE recommendation.
UK Dravet pricing — post-PAS cost against the standard NICE TA bar
| Agent | NICE Route | Post-PAS Annual NHS Cost | Monitoring Requirement |
|---|---|---|---|
| Epidiolex (cannabidiol) | TA614 (2019), standard TA | £15,000-25,000/yr | Standard follow-up only |
| Fintepla (fenfluramine) | TA808 (2022), standard TA | £30,000-50,000/yr incl. monitoring | FCMS: echo every 6 months, monthly BP, annual ECG (£2K-4K/yr) |
| Diacomit (stiripentol) | CG137 clinical guideline; no dedicated TA | Not separately appraised | Backbone regimen; never formally cost-effectiveness reviewed |
Sources: NICE TA614 (2019) and TA808 (2022) Final Appraisal Determinations; NHS England Highly Specialised Services commissioning specification; Fintepla Cardiac Monitoring Scheme programme details (UCB UK); NICE CG137.
What this model answers
Every section answers a named commercial question your team is asking, scoped to your asset.
Delivers
- Standard TA vs HSS threshold comparison
- TA614/TA808 Final Appraisal Determination pricing evidence
- the PAS discount depth required to clear the standard bar
Delivers
- FCMS structure and per-patient cost
- UCB PAS reimbursement mechanics
- the monitoring-cost-free positioning opportunity for a new agent
Delivers
- NHS Dravet budget sizing by agent and patient share
- competitive displacement pricing thresholds
- PAS structuring precedent from TA614/TA808
Custom model delivered in 72 hours.
Commission This ModelWhat's inside
- Why the standard TA QALY bar, not the HSS threshold, sets the ceiling for a new UK Dravet entrant
- Pressure-tested against the TA614/TA808 precedent before the rest of the model is built out
- Why cannabidiol and fenfluramine were appraised via standard TA, not HSS
- The £20K-30K QALY bar a new entrant inherits
- £15K-25K and £30K-50K post-PAS annual costs decomposed
- What the confidential PAS discount likely conceals
- FCMS monitoring cadence and the £2K-4K per-patient annual cost
- How UCB's PAS reimbursement of monitoring cost shapes the NICE model
- The £9-16M combined NHS Dravet budget by agent and patient share
- 50-60% cannabidiol / 30-40% fenfluramine step-up modelling
- List price, PAS discount, and net NHS cost decomposed by agent
- Discount depth precedent from TA614 and TA808
- Sequencing recommendation across NHS HSS centres
- Conservative, base, and aggressive revenue scenarios tied to PAS structuring
- The open pricing questions your team must close before the UK launch price is locked
- Structured for an internal pricing committee session
Included with every brief
How AXLRx builds this model
Prepared by MoatRx analysts.
Every AXLRx pricing model is built from NICE Technology Appraisal Final Appraisal Determinations and NHS England commissioning documentation, not secondary summaries. Findings are independently verified before inclusion.
UK Dravet syndrome pricing sources: NICE TA614 (cannabidiol, 2019) and TA808 (fenfluramine, 2022) Final Appraisal Determinations, NHS England HSS Dravet commissioning budget analysis, and Fintepla Cardiac Monitoring Scheme programme details (UCB UK).
- Standard TA QALY threshold verified against NICE TA614 and TA808 Final Appraisal Determinations
- Post-PAS annual costs verified against NHS England HSS Dravet commissioning budget analysis
- FCMS monitoring cadence and cost verified against UCB UK Fintepla Cardiac Monitoring Scheme programme documentation
Frequently asked questions
Commission this model
AXLRx delivers Dravet syndrome pricing strategy models built for market access and pricing teams navigating NICE's standard TA route and NHS budget dynamics. Custom model in 72 hours.
Specify your indication, comparator class, and PAS scenario scope.
AXLRx analyst confirms pricing mechanism assumptions and QALY threshold before building.
Research-verified pricing model in 72 hours with optional analyst readout.