hereditary angioedema
Rare disease · 2011–2024
Every decision
| Medicine | Meeting | Outcome | Consumer input |
|---|---|---|---|
| garadacimab Routine prevention of recurrent hereditary angioedema (HAE) attacks in adult and adolescent patients aged 12 years and older with HAE Types I and II. | Nov 2024 | Recommended with restriction | 20 individuals HAE Australia |
| lanadelumab Routine prophylaxis of recurrent attacks of hereditary angioedema (HAE) in patients who have experienced at least 12 treated acute HAE attacks within 6 months. | Jul 2021 | Recommended with restriction | 26 individuals HAE Australia |
| lanadelumab Routine (long-term) prophylaxis of recurrent attacks of hereditary angioedema (HAE) Types 1 or 2 in patients aged 12 years and older who have experienced at… | Jul 2020 | Deferred | 24 individuals |
| lanadelumab Routine prophylaxis of recurrent attacks of hereditary angioedema (HAE) in patients aged 12 years and older. | Jul 2019 | Not recommended | 20 individuals |
| icatibant Anticipated emergency treatment of an acute attack of hereditary angioedema (HAE) in patients with confirmed C1-esterase inhibitor deficiency. | Jul 2011 | Not recommended | no section in document |
Who spoke
HAE Australia
What the PBS pays
$50M in government benefit over 2024–25, across 2,678 services.
This is spend on the medicines considered for this condition, not spend on the disease. A medicine used for several conditions is counted in full under each, so figures across conditions add to more than national PBS expenditure.
| Medicine | Government benefit |
|---|---|
| lanadelumab | $48.1M |
| icatibant | $2.3M |
Appraised elsewhere
NICE, in England and Wales, has appraised 3 technologies for this condition, recommending 3 . A different committee, a different population and a different price: this is what has been looked at there, not a verdict on what happened here.
| Technology | Appraisal | Outcome | Date |
|---|---|---|---|
| garadacimabGaradacimab for preventing recurrent attacks of hereditary angioedema in people 12 years and over | TA1101 | recommended restricted | 2025-10 |
| berotralstatBerotralstat for preventing recurrent attacks of hereditary angioedema | TA738 | recommended restricted | 2021-10 |
| lanadelumabLanadelumab for preventing recurrent attacks of hereditary angioedema | TA606 | recommended restricted | 2019-10 |
Registered, not subsidised
Medicines on the ARTG for this condition with no PBAC record at all. Registration and subsidy are separate decisions: a medicine can be legally available in Australia and never have been put to the committee.
| Medicine | On the ARTG since | Registrations |
|---|---|---|
| sebetralstatEKTERLY sebetralstat 300 mg film coated tablets blister pack | 2025 | 1 |
The ARTG export holds current registrations only, so the year is the earliest entry still on the register rather than a first-registration date. The condition here comes from the registered label, which is usually broader than the population a sponsor asks to have subsidised.
Conditions are classified by a language model from the indication text of each submission, so an individual label here can be wrong. Consumer input is read from the document's own consumer comments section: 4 of 4 decisions since 2014 carried some. Silence means no comment reached the committee through that facility, not that nobody was affected. More on how this was built.