Game-changing thyroid eye disease treatment now on the PBS

Game-changing thyroid eye disease treatment now on the PBS

Australians with moderate to severe thyroid eye disease (TED) now have affordable access to a targeted treatment via the PBS for the first time.

by Rosemary Ainley, 1 November 2026

We are excited to announce that adults with active moderate to severe thyroid eye disease (TED) now have affordable access to the first biologic treatment specifically for this condition in Australia. Teprotumumab (Tepezza®) was added to the Pharmaceutical Benefits Scheme (PBS) on 1 November 2026 for eligible patients.

What is Thyroid Eye Disease (TED)?

TED is a little-known autoimmune condition that can lead to decreased quality of life, permanent disfigurement and vision loss in some people. It is also known as Graves’ eye disease. Common symptoms include:

  • Bulging eyes (proptosis)
  • Eye pain or eye pressure
  • Retracted eyelids
  • Dry, gritty eyes
  • Watery, teary eyes (epiphora)
  • Puffy eyes or eyelids (periorbital oedema)
  • Inflamed eyelids (blepharitis)
  • Red eyes or eyelids or bloodshot eyes
  • Light sensitivity (photophobia)
  • Blurry vision
  • Misaligned or crossed eyes (strabismus).

The physical and mental effects of the visible symptoms are among the ones that impact TED patients the most. Not only are they in pain from the inflammation, irritation and eye pressure, but they are also embarrassed about their bulging and misaligned eyes.

This stigma and loss of self-esteem prevent many people with TED from going out and can have a negative effect on their relationships. They may also actively avoid mirrors or having their photo taken. Many use dark glasses or hats to hide their appearance, which also helps manage their sensitivity to glare.

Treatments for TED aim to relieve symptoms, reduce inflammation, correct strabismus, preserve and optimise vision and improve cosmetic appearance. Topical treatments and lifestyle changes only help with mild TED symptoms or in conjunction with medical treatments.

Active TED can often be managed with steroids (including methylprednisolone infusions) or immunomodulatory agents such as cyclosporine or azathioprine. For some people, low-dose radiation therapy may be offered instead of, or along with, steroid therapy to reduce inflammation. During the active stage, symptoms can come and go.

Once symptoms stabilise or stop, TED eye specialists may determine that the disease has progressed to the inactive or chronic phase. In this phase, some people may have no symptoms; however, that does not mean the disease has gone away. Some people may also need treatment (including surgery) for damage caused by prolonged inflammation, such as scarring or fibrosis.

Until now, the only targeted treatments (biologics) available for TED were developed for other conditions. There were no medicines available in Australia specifically designed to target the parts of the immune system that affect TED disease progression.

What is teprotumumab?

The biologic teprotumumab (Tepezza®) is a fully human monoclonal antibody directed against the protein called insulin-like growth factor-1 receptor. When teprotumumab binds to IGF-1R, it blocks its activation and signalling. This process shrinks the swollen muscles and fat behind the eye, significantly reducing eye bulging, easing eye pain and redness and improving or eliminating double vision.

Teprotumumab is administered via intravenous (IV) infusion, typically once every three weeks for a total of eight infusions (spanning about five months). The first infusion is given at a lower dose, with subsequent doses increased. Infusions are performed in a hospital setting under medical supervision.

Why is this news so exciting?

Adults with active moderate to severe TED who meet the clinical access criteria can now treat their underlying condition before it has time to cause permanent eye damage.

Not only can it help avoid the side effects of steroids and immunomodulatory agents, but it also appears to have a lower risk-to-benefit ratio when compared with existing treatments. Equally as important, it can reduce users’ likelihood of needing corrective surgery, living with permanent eye disfigurement or developing secondary conditions.

From 1 November 2026, teprotumumab will be available through the PBS at $25 per script. Without PBS subsidy, patients would pay more than $10,500 per script. Those who qualify for access to teprotumumab will finally have the chance to try an affordable treatment that can greatly improve their symptoms and allow them to enjoy a better quality of life.

We are proud to say that, along with other organisations and individuals, we advocated for teprotumumab to be added to the PBS. We especially want to thank those members of our community who allowed us to include comments about their journeys with TED in our submission.

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