Rare Disease · United Kingdom · In-Market

UK Hereditary Angioedema Competitive Intelligence

England's NICE has issued three positive technology appraisals funding HAE prophylaxis since 2019 (TA606, TA738, TA1101), but the two newest MHRA-licensed agents, donidalorsen and sebetralstat, remain in NICE appraisal with no confirmed final NHS funding decision.

3 NICE technology appraisals2 agents still in appraisalIn-MarketUpdated Q3 2026
Market United States GCC (Gulf) United Kingdom Stage
The Landscape

NICE has cleared three HAE prophylaxis agents since 2019; two newer entrants remain under appraisal.

NICE has issued three positive technology appraisals for HAE prophylaxis in England: lanadelumab (Takhzyro, TA606, published 16 October 2019, recommended only for patients already eligible for C1-inhibitor prophylaxis under NHS England's commissioning policy), berotralstat (Orladeyo, TA738, published 20 October 2021, recommended for patients with two or more attacks per month), and garadacimab (Andembry, TA1101, published 8 October 2025, recommended on the same two-attacks-per-month threshold). Two newer MHRA-approved agents sit earlier in the pathway: donidalorsen (Dawnzera) has a NICE draft guidance consultation open, and sebetralstat (Ekterly) has draft guidance favourable to funding, but neither has a confirmed final NICE decision as of this brief.

The sequencing matters commercially: three years separate TA606 and TA1101, and each carries a confidential simple-discount patient access scheme, so list prices (berotralstat's annualised list of roughly £133,121 per NICE TA738; garadacimab's £20,625 per pre-filled pen per TA1101) understate real net cost. Sebetralstat bridges the pre-NICE gap via an MHRA Early Access to Medicines Scheme opinion from March 2025; donidalorsen has no confirmed interim NHS access route while its appraisal proceeds. Any UK market-access read must track appraisal status drug-by-drug, not assume a US or EU approval implies NHS funding.

3
NICE technology appraisals recommending HAE prophylaxis in England as of this brief (TA606 lanadelumab; TA738 berotralstat; TA1101 garadacimab)
2
MHRA-licensed HAE agents (donidalorsen, sebetralstat) still inside NICE appraisal with no confirmed final funding decision
1,152
patients with HAE types I/II identified across 37 UK centres in the national survey underpinning UK prevalence estimates (Longhurst et al., JACI In Practice, 2023)
18 years
historical UK diagnostic delay for type II HAE reported in the 2013 national audit, improving to a median 6.2 years for type I in more recent specialist-centre data
Drug Landscape

Three NICE technology appraisals fund HAE prophylaxis in England; two newer agents remain in appraisal.

AgentMechanismUK StatusKey Evidence
Lanadelumab (Takhzyro, Takeda)Anti-plasma kallikrein mAb, SCNICE TA606 (16 Oct 2019): recommended, restricted to patients eligible for C1-inhibitor prophylaxis; simple discount PASHELP: 87% reduction in monthly attack rate vs placebo
Berotralstat (Orladeyo, BioCryst)Oral plasma kallikrein inhibitorNICE TA738 (20 Oct 2021): recommended for patients with ≥2 attacks/monthAPeX-2: ~80% reduction in monthly attack rate vs placebo
Garadacimab (Andembry, CSL Behring)Anti-Factor XIIa mAb, monthly SCNICE TA1101 (8 Oct 2025): recommended for patients with ≥2 attacks/monthVANGUARD: 87% reduction in monthly attacks
Donidalorsen (Dawnzera, Ionis)Antisense oligonucleotide, SCMHRA-approved; NICE draft guidance consultation open, no confirmed final decisionOASIS-HAE: ~81% reduction in attack rate vs placebo
Sebetralstat (Ekterly, KalVista)Oral plasma kallikrein inhibitor, on-demandMHRA-approved Jul 2025, bridged by EAMS opinion Mar 2025; NICE draft guidance favourable, final pendingKONFIDENT: first oral on-demand HAE therapy

Sources: NICE TA606, lanadelumab, published 16 October 2019; NICE TA738, berotralstat, published 20 October 2021; NICE TA1101, garadacimab, published 8 October 2025; NICE in-development project pages for donidalorsen and sebetralstat; NHS England Clinical Commissioning Policy for C1-esterase inhibitor prophylaxis (Jul 2016) and acute-attack treatment (2018); Longhurst et al., JACI In Practice, 2023; UK national audit of hereditary and acquired angioedema, Clin Exp Immunol, 2013.

Commercial Questions

What this brief answers

Every section answers a named commercial question your team is asking, scoped to your asset.

01
Which HAE therapies does the NHS in England actually fund today, and which are only MHRA-licensed without a confirmed funding decision?

Delivers

  • A drug-by-drug NICE appraisal status map distinguishing final technology appraisals from open consultations
02
What restriction criteria, such as attack frequency or prior-therapy eligibility, gate access within each NICE-recommended agent?

Delivers

  • The exact NICE eligibility criteria per technology appraisal, usable for funded-population sizing
03
How do UK underdiagnosis and diagnostic delay affect the addressable treated population for a new HAE entrant?

Delivers

  • UK-specific epidemiology and diagnostic-delay benchmarks to size the funded-versus-undiagnosed population gap

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Contents

What's inside

Rare Disease · 24–32 pp · In-Market · Analyst report + Excel model + PowerPoint readout

1 NICE Technology Appraisal Landscape 4 pp
  • TA606 lanadelumab, TA738 berotralstat, TA1101 garadacimab
  • Restriction criteria per appraisal
2 Agents in Appraisal — Donidalorsen & Sebetralstat 4 pp
  • MHRA licensing status vs confirmed NICE funding
  • EAMS bridge mechanism for sebetralstat
3 NHS England Commissioning — Established Standard of Care 3 pp
  • C1-inhibitor and icatibant national commissioning policies
4 UK Epidemiology & Diagnostic Delay 4 pp
  • The 37-centre national survey and 1,152-patient count
  • Historical vs current diagnostic-delay benchmarks
5 Pricing & Patient Access Scheme Structure 3 pp
  • Why every NICE-recommended HAE agent carries a confidential simple-discount patient access scheme that understates its real net cost
  • How list prices, berotralstat's roughly £133,121 annualised and garadacimab's £20,625 per pre-filled pen, compare against the discounted net price payers actually pay
6 Competitive Positioning Summary 3 pp
  • Why three years separate lanadelumab's TA606 and garadacimab's TA1101, and what that sequencing means for a new UK entrant
  • How sebetralstat's EAMS bridge contrasts with donidalorsen's lack of any confirmed interim NHS access route
Appendix and source ledger included · 45-minute analyst readout included with delivery
Formats

Included with every brief

PDF
PDF Brief
HAE CI Brief — Complete Edition
20–30 page analyst brief: NICE appraisal status, NHS commissioning, and UK epidemiology for hereditary angioedema.
XLS
Excel Model
UK HAE Drug Status Grid
NICE TA numbers, restriction criteria, and pricing data by agent in editable Excel format.
PPT
PowerPoint
Executive Readout — PowerPoint
10–15 slide readout deck for commercial team presentations, formatted to AXLRx design standards.
Methodology

How AXLRx builds this brief

Prepared by MoatRx analysts.

This brief sources findings directly from NICE's published technology appraisal guidance pages and NICE's in-development project pages for donidalorsen and sebetralstat, which show draft guidance issued but final guidance not yet confirmed as of this brief. UK epidemiology figures come from the peer-reviewed national survey of hereditary angioedema in the UK and the earlier UK national audit.

MHRA approval dates and regulatory status for donidalorsen and sebetralstat were cross-checked against regulatory press notices. NHS England commissioning policy for C1-esterase inhibitor prophylaxis and acute-attack treatment was sourced from the original NHS England policy documents. No US approval or reimbursement pattern was carried across to the UK by assumption.

  • Every NICE technology appraisal number (TA606, TA738, TA1101) verified against the live NICE guidance page, not inferred from US FDA approval status
  • Donidalorsen and sebetralstat UK status confirmed as in NICE appraisal with no final decision confirmed, based on live NICE in-development project pages
  • UK prevalence and diagnostic-delay figures sourced from peer-reviewed UK national survey and audit publications, not extrapolated from US epidemiology
FAQ

Frequently asked questions

Deliverables
What formats are included with every brief?
Every commissioned brief includes three deliverables: a 20–30 page PDF analyst brief with verified sources and exhibit tables, an editable Excel model, and a 10–15 slide PowerPoint readout deck formatted for commercial team presentations. An optional 45-minute analyst readout call is included with all deliveries.
Sources
What sources does AXLRx use, and how are findings verified?
AXLRx builds from primary sources only — regulatory databases (MHRA, NICE), peer-reviewed journals, live payer coverage policy documents, and HTA body publications. No secondary summaries. Every factual claim is independently verified before inclusion.
Customisation
Can I tailor the brief to my specific question or comparator set?
Yes. The intake form captures your indication, target geography, key comparator drugs, and the specific commercial question you need answered. Commission via the intake form to start.
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AXLRx HAE Competitive Intelligence — UK is built for commercial and market access teams that need a rigorous, evidence-based read on NICE funding status across the HAE class. Custom brief in 72 hours.

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