Australia approved a therapy for hypoparathyroidism but patients still can’t access it
Hannah Nyx, Art Therapist & Counsellor (AThR, ACA), lived experience advocate
Chronic hypoparathyroidism is a long-term endocrine condition caused by low or absent parathyroid hormone (PTH), affecting calcium regulation across the nervous, muscular, cardiovascular and renal systems. In Australia, most cases occur after thyroid surgery, particularly for cancer. International studies show around 20–30% of thyroidectomy patients develop temporary hypoparathyroidism, and approximately 1–7% develop permanent hypoparathyroidism, with far higher rates after complex or repeated procedures.¹
Treatment hasn’t changed in decades: high-dose calcium and active vitamin D. These correct blood levels but do not restore physiological calcium signalling, leaving patients with long-term symptoms and higher risks of renal, neuromuscular and cardiac complications.
In February 2025, the Therapeutic Goods Administration (TGA) approved Yorvipath (palopegteriparatide), the first therapy designed to replace parathyroid hormone rather than compensate for its absence. However, after two Pharmaceutical Benefits Advisory Committee (PBAC) decisions not to recommend listing, citing cost-effectiveness concerns and lack of Australian data, patients still cannot access it.²
Conventional therapy manages blood tests, not physiology
Research shows persistent complications under standard therapy, including kidney stones and nephrocalcinosis (up to one-third of patients), chronic kidney disease, muscle weakness, fatigue and cognitive impairment. Fluctuating calcium levels can also affect cardiac electrophysiology, leading to arrhythmias and symptoms that significantly impact daily functioning.³
Despite this, many patients are described as “stable” because their blood tests appear normal.
Importantly, in November 2025 the European Society of Endocrinology (ESE) published revised clinical guidelines on chronic hypoparathyroidism in adults. The guideline, endorsed by the Endocrine Society of Australia, was updated specifically because of greater recognition of patient burden and long-term morbidities under conventional therapy. The guideline provides a treatment algorithm outlining when patients should transition from supplements to PTH replacement rather than remain indefinitely on calcium and calcitriol alone.⁴
A therapy that restores physiology
Yorvipath delivers slow-release PTH(1-34) over 24 hours, providing a hormonal profile closer to natural physiology. International trials and real-world data report:
normalised serum and urine calcium
reduced or eliminated reliance on supplements
improved kidney function, including increased eGFR
improved physical and cognitive functioning⁵
These benefits are already being seen in countries where the therapy is available – Germany, Austria, the UK, Japan and the USA. Australia is not yet seeing these outcomes because access has stalled at the reimbursement stage.
Cost concerns must include the cost of not treating
PBAC continues to highlight uncertainty around the economic model. But chronic kidney disease is among Australia’s most expensive long-term conditions, with annual costs estimated at:
~A$60,000–70,000 per patient for advanced disease
up to ~A$180,000 per patient per year for dialysis and kidney replacement therapy⁶
Given hypoparathyroidism increases renal risk, delaying access may cost far more in preventable complications than subsidising the treatment earlier—especially in a small, clearly defined population.
The evidence gap is structural, not scientific
Australia does not have accurate epidemiological data for hypoparathyroidism. There is no national registry, few longitudinal datasets, and most figures are extrapolated from overseas. The ESE guideline also redefines “chronic” postsurgical hypoparathyroidism as persisting beyond 12 months rather than six, based on a review of 14 studies involving nearly 9,000 neck-surgery patients, which found an additional 7.5% of patients recover between six and twelve months.⁴ This reinforces the need to differentiate early-recovery cases from truly chronic disease—the group most likely to benefit from PTH replacement.
A more effective approach would be conditional access paired with real-world data collection, rather than withholding access until the data appears.
A practical way forward
A workable model could include:
PBS listing for patients who remain symptomatic or at risk despite standard therapy
Risk-sharing pricing arrangements
Mandatory real-world outcome reporting
Development of a national hypoparathyroidism registry in collaboration with clinicians and patient groups
This would allow access now while generating the local evidence PBAC requires.
The urgency is real
For Australians living with chronic hypoparathyroidism, this isn’t hypothetical. It affects daily functioning, employment, cognitive clarity, arrhythmia risk, renal progression and long-term disability. Australia recognised the unmet need by approving the therapy. The next step is enabling access.
Support this Cause
To help Australians with hypoparathyroidism access the only approved hormone replacement therapy, please sign this petition.
References
International thyroidectomy outcome series, see: European Journal of Endocrinology 193(5):G49–G78, 2025.
PBS Medicine Status, “palopegteriparatide (Yorvipath) – March 2025”.
Systematic review of chronic hypoparathyroidism complications.
ESE Guideline: Revised clinical practice guideline for chronic hypoparathyroidism in adults, Nov 2025.
PaTHway Phase 3 trial and US real-world cohort.
Kidney Health Australia cost modelling; BMC Health Services Research Australian CKD cost study.
