IDOPATHIC pulmonary arterial hypertension (IPAH) is a rare, progressive disease characterised by high blood pressure in the lungs’ arteries without an identifiable cause. IPAH is so rare that few people know of it, but in Shepparton one brave local has battled the condition for more than 26 years.
Tina Powney has lived with IPAH for over two decades. She relies on a continuous intravenous medication delivered through a Hickman line directly into her heart, carrying a pump with her 24 hours a day, seven days a week. Continued Page 15
If the pump alarms or stops working, Tina has mere minutes to act before her health is at serious risk. Though lifesaving, the Hickman line also puts her at constant risk of life-threatening infections and repeated hospital admissions.
It is not all doom and gloom for Tina; a breakthrough medication called Winrevair (sotatercept) is being considered for listing on the Pharmaceutical Benefits Scheme (PBS). If approved, this treatment could allow Tina to stop the continuous IV pump and instead receive a simple injection every three weeks.
“It has the potential to dramatically improve my quality of life and reduce the daily risks associated with my current treatment,” said Tina.
“This isn’t just my story. It’s the story of Australians living with pulmonary arterial hypertension who are hoping for access to a treatment that could change their lives.
“I am not seeking sympathy. I simply want to raise awareness about this devastating disease and the importance of ensuring Australians have access to life-changing medicines.”
Winrevair isn’t the only medication that needs PBS approval, with a new report from Medicines Australia, ‘Bitter Pill: How Australian patients are missing out on the latest medical breakthroughs’, identifying 18 specific medicines that want to be listed in Australia but have been deterred by agonising processes and declining investment in the PBS.
Decisions about PBS listings follow formal assessment processes before government approval.
