X-linked hypophosphataemia
Rare disease · 2021–2022
Every decision
| Medicine | Meeting | Outcome | Consumer input |
|---|---|---|---|
| burosumab Treatment of X-linked hypophosphataemia (XLH) in paediatric and adult patients. XLH is a rare genetic disorder characterized by hypophosphataemia, renal… | May 2022 | Not recommended | 175 individuals Australasian Paediatric Endocrine Group |
| burosumab X-linked hypophosphataemia (XLH) in paediatric and adult patients. | Mar 2022 | Not recommended | 175 individuals Australasian Paediatric Endocrine Group |
| burosumab Treatment of paediatric patients (< 18 years) with X-linked hypophosphataemia (XLH). | Mar 2021 | Not recommended | 148 individuals XLH Australia · Australasian Paediatric Endocrine Group |
Who spoke
Australasian Paediatric Endocrine Group · XLH Australia
What the PBS pays
$79M in government benefit over 2024–25, across 3,648 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 |
|---|---|
| burosumab | $78.8M |
Appraised elsewhere
NICE, in England and Wales, has appraised 1 technology for this condition, recommending 1 . 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 |
|---|---|---|---|
| burosumabBurosumab for treating X-linked hypophosphataemia in adults | TA993 | recommended restricted | 2024-08 |
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: 3 of 3 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.