Call for access to improve quality of life for thyroid cancer survivors

A TGA approved drug that prevents kidney failure in thyroid cancer survivors remains inaccessible.

Thyroid cancer survivors are becoming increasingly frustrated that they cannot access a drug that prevents kidney failure, despite it being approved by the Therapeutic Goods Administration (TGA) for nearly a year.

Yorvipath is a treatment that replaces the missing hormone in chronic hypoparathyroidism, a condition that affects thousands of Australians, mostly after thyroid cancer treatment.

The TGA approved it in February 2025, however the Pharmaceutical Benefits Advisory Committee (PBAC) has since rejected it twice, which means it cannot be listed on the PBS.

In the meantime, patients remain on the only available treatment which is high-dose calcium and vitamin D, which can lead to other debilitating symptoms such as kidney damage, unstable calcium levels, fatigue, cognitive issues, and cardiovascular strain.

Cancer survivors left in limbo

WA based counsellor and art therapist Hannah Nyx developed hypoparathyroidism after thyroid cancer surgery and is struggling to keep her business going while managing her side effects. She is concerned that while current treatment is clinically documented to calcify the kidneys over time, leading to an increased risk of her requiring dialysis, she is effectively blocked from using a better alternative.

“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.”

A petition she started to provide access to Yorvipath for Australians for permanent hypoparathyroidism has so far gathered more than 450 signatures.

Ms Nyx is frustrated that despite developing vitamin D toxicity and cardiac issues, she cannot access the TGA approved alternative.

“There’s very high risk of kidney issues, kidney stones, kidney failure, and the heart issues. Now that I know I have some underlying cardiovascular things that I didn’t realise were there before, I guess it’s further complicated and they impact each other,” she says.

“Aside from the potential cost of future treatment, I will not be able to work.”

She says she’s far from an isolated case, and the comparative costs of dialysis of up to $120,000 a year should be taken into account.

“I support people who have disabilities, so it’s been really stressful for me not being able to be consistent, like having all the procedures done for the thyroid cancer and thinking, “Oh yeah, all the worst is over.” And then, “Oh wait, no, it’s not,” she says.

“It’s hard to explain to people, it’s hard to get anyone to listen. It’s very frustrating to keep repeating myself and paying initial consult fees in private clinics.”

“Federal Health Minister Mark Butler could kindly request that feedback, prioritise it again and renegotiate the cost and then also look into some research, definitely logging stats in Australia, but also some awareness of the international research and what’s happening there.”

Friend and colleague and endorsed clinical psychologist of 25 years Dr John Forbes says he has watched the health of Ms Nyx decline with standard treatment that is completely ineffective for her, while the government blocks a preventative therapy alternative that costs a fraction of the dialysis it would ultimately avoid.

“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.”

“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.”

Dr Forbes says her cancer journey was difficult enough, to then discover “the long-term impact of the treatment for the flow-on condition, the hypoparathyroidism, is worse than the cancer.”

“And then to find out that there’s a drug that could potentially make such a huge difference. From my understanding, if it works, it will let her regain her functioning and restore her life expectancy.”

“The PBAC says it needs long-term real-world data. But there is no Australian registry collecting that data, and there cannot be one without access to the drug. It’s a policy Catch-22.”

“Germany, Japan, and the US have already resolved this while Australia has not.”

Delay in approval caused by pricing issues

In a statement, a spokesman for the Department of Health, Disability and Ageing says the PBAC provides independent advice to government about what medicines should be subsidised through the PBS.

Yorvipath (palopegteriparatide) was considered twice by the PBAC — in March and July 2025 — for the treatment of patients with chronic hypoparathyroidism who are inadequately controlled on conventional therapy (ie, active vitamin D and calcium supplements).

He says while the PBAC acknowledges that palopegteriparatide was more effective than conventional therapy, there were concerns that the proposed price was too high.

The PBAC considered palopegteriparatide would be cost-effective only if the price was reduced to reflect a more realistic estimate of long-term benefits.

He said this does not necessarily represent the PBAC’s final view, and that it would welcome further submissions on the drug at future regular meetings.

He said it was up to the pharmaceutical company Specialised Therapeutics Pharma whether or not to provide compassionate access programs, and that patients could discuss with their doctor making an application to the drug and therapeutics committee of a local public hospital, on their behalf, for assistance with the cost of treatment.

Nance Haxton was a journalist at the ABC for nearly 20 years. She’s also worked as an Advocate at the Disability Royal Commission helping people with disabilities tell their stories and as a senior reporter for the National Indigenous Radio Service. 

In that time she’s won a range of Australian and international honours, including two Walkley Awards, and three New York Festivals Radio Awards trophies.

Now freelancing as The Wandering Journo, Nance is independently producing podcasts including her personal audio slice of Australia “Streets of Your Town”.

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