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New PBS listing helps Australians with rare genetic condition


From 1 December 2021, Australians with a rare and potentially deadly condition, hereditary angioedema, will be able to obtain potentially life changing medication through the Pharmaceutical Benefits Scheme (PBS).

The Morrison Government is listing Takhzyro (lanadelumab) on the PBS for the first time for patients with hereditary angioedema.

Hereditary angioedema is a rare, chronic genetic condition occurring in around 1 in 50,000 people. It results from a defect in the gene that controls a blood protein called C1-Inhibitor. This leads to higher levels of a substance called bradykinin in the bloodstream, which causes symptoms such as swelling and pain.

Most patients experience their first attack during childhood or adolescence. Symptoms include episodes of oedema (swelling) in various body parts including the hands, feet, face and airway. Swelling in the intestinal wall causes severe abdominal pain, nausea and vomiting, while airway swelling is particularly dangerous and can lead to death by suffocation.

Takhzyro helps to reduce the amount of bradykinin in the bloodstream and prevents symptoms associated with hereditary angioedema.

Minister for Health and Aged Care, Greg Hunt, said this new listing will benefit more than 100 Australians each year.

“Without this PBS subsidy, Australian patients are paying around $241,000 per year for this treatment. From 1 December, they’ll pay $41.30 per script, or $6.60 with a concession card,” Minister Hunt said.

“Since 2013, the Coalition Government had approved more than 2,700 new or amended listings on the PBS. This represents an average of around 30 listings or amendments per month – or one each day – at an overall investment by the Government of $13.9 billion.

“The Morrison Government’s commitment to ensuring Australians can access affordable medicines, when they need them, remains rock solid.”

The PBS listing of lanadelumab was recommended by the independent Pharmaceutical Benefits Advisory Committee.


Original content from The Hon Greg Hunt MP media page. Note: Content has been edited for style and length.

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Nina Alvarez is a Content Producer for Healthcare Channel. Her interests include writing, particularly about the healthcare sector and the many ways it can improve to further benefit people from all walks of life.


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