Thyroid cancer survivors in Australia are expressing growing frustration over their inability to access a crucial drug that prevents kidney failure, despite its approval by the Therapeutic Goods Administration (TGA) nearly a year ago. The drug, Yorvipath, is designed to replace the missing hormone in chronic hypoparathyroidism—a condition that affects thousands of Australians, primarily as a result of thyroid cancer treatment.
Approved by the TGA in February 2025, Yorvipath has since faced rejection twice by the Pharmaceutical Benefits Advisory Committee (PBAC), preventing its inclusion on the Pharmaceutical Benefits Scheme (PBS). Consequently, patients are left with the only available treatment: high-dose calcium and vitamin D. This regimen can lead to severe side effects, including kidney damage, unstable calcium levels, fatigue, cognitive issues, and cardiovascular strain.
Cancer Survivors Left in Limbo
Hannah Nyx, a counselor and art therapist based in Western Australia, developed hypoparathyroidism following thyroid cancer surgery. Struggling to manage her side effects, Nyx is concerned about the long-term health risks posed by her current treatment, which is known to calcify the kidneys over time, potentially leading to dialysis.
“I didn’t really know about this condition before having it,” Ms. Nyx says. “I heard from an endocrinologist that this drug existed and that while my condition was permanent, I could not access the drug.”
In response, Nyx initiated a petition advocating for the availability of Yorvipath for Australians with permanent hypoparathyroidism, garnering over 450 signatures to date. Despite developing vitamin D toxicity and cardiac issues, she remains unable to access the TGA-approved alternative.
“There’s very high risk of kidney issues, kidney stones, kidney failure, and the heart issues,” she explains. “Aside from the potential cost of future treatment, I will not be able to work.”
Nyx emphasizes that her situation is not unique, highlighting the economic burden of dialysis, which can cost up to $120,000 annually. She calls for Federal Health Minister Mark Butler to prioritize feedback, renegotiate costs, and consider international research and developments.
Expert Opinions and Economic Implications
Dr. John Forbes, a clinical psychologist and colleague of Nyx, has witnessed her declining health under standard treatment. He criticizes the government’s decision to block an effective and more affordable therapy.
“It’s almost impossible for her to function some days,” Dr. Forbes says. “When I became aware of Yorvipath, I could not believe that such an effective treatment would be denied to Australians because of poor scientific interpretation and bad economic analysis.”
Dr. Forbes argues that Yorvipath could significantly improve quality of life and life expectancy while providing a positive economic impact by reducing the need for costly dialysis.
“The solution for the quality of life for people such as Hannah, along with improved life expectancy and a significant positive economic impact when all factors are taken into account, is so easily in reach,” he asserts.
He further points out the lack of an Australian registry to collect long-term real-world data, which is crucial for PBAC’s decision-making. “Germany, Japan, and the US have already resolved this while Australia has not,” he adds.
Delay in Approval Caused by Pricing Issues
According to a spokesman for the Department of Health, Disability, and Ageing, the PBAC provides independent advice to the government on which medicines should be subsidized through the PBS. Yorvipath was considered twice by the PBAC in March and July 2025 for patients inadequately controlled on conventional therapy.
“While the PBAC acknowledges that palopegteriparatide was more effective than conventional therapy, there were concerns that the proposed price was too high,” the spokesman states. “The PBAC considered palopegteriparatide would be cost-effective only if the price was reduced to reflect a more realistic estimate of long-term benefits.”
The spokesman notes that this does not necessarily represent the PBAC’s final view and welcomes further submissions on the drug in future meetings. He also mentions that the pharmaceutical company, Specialised Therapeutics Pharma, could offer compassionate access programs, and patients could seek assistance through local public hospitals.
This ongoing issue highlights the complex interplay between drug approval processes, economic considerations, and patient advocacy. As thyroid cancer survivors continue to push for access to Yorvipath, the debate underscores the need for a balanced approach that considers both economic and health outcomes.
