Jenny was just 15 when her sister was diagnosed with Pulmonary Arterial Hypertension (PAH). It was the 70s and very little was understood about the rare condition. Jenny watched helplessly as her beloved sister deteriorated.
“There were no medications to help Rosslyn and we were very aware of that. She spent quite a bit of time in hospital being tested by many medical teams with a view to research, because they couldn’t do anything for her. At that time, the medical teams did not have many patients of her age with this disease. I knew from day one that she was going to die from this disease,” Jenny said.
Almost five decades later, Jenny’s daughter, Emma, was diagnosed with PAH at age 27.
“I was devastated. We had been led to believe this was a rare disease and not one that would be passed on. Knowing that your daughter cannot play sport, cannot have children, cannot do an enormous amount of day-to day activities is devastating.
“What I’ve learnt from my experience is that you have to be your own advocate or the advocate for your loved one. People just don’t know what treatment and support is available to them, who to talk to and where to find information.”
Jenny joined passionate consumers from across the country in our latest round of advocacy training to help develop a policy platform for change and learn how to have tough conversations to influence key decision makers around government investment.
“If other families can come together to share their stories and fight, we can create real change. The causes that make the greatest impact do so by people sharing their experiences. We love Emma immensely and want the very best quality of life she can possibly have and don’t want her following in her Aunt’s path.”
Through Lung Foundation Australia’s Your Voice Advocacy Program, people like Jenny are sharing their experiences to support the development of priorities and solutions to address the significant gaps in treatment and services.
“Becoming an advocate can be hugely rewarding. There are many ways you can make your voice count – whether it’s contributing to submissions, sitting down with your local Member of Parliament to discuss the impact of life with a lung disease or simply sharing your story to help raise awareness,” Advocacy and Policy Manager, Patricia said.
Improved access to treatment
Lung Foundation Australia consistently advocates for the listing of life-changing medicines on the Pharmaceutical Benefits Scheme (PBS). We’re pleased to see that from 1 October 2020, endothelin receptor antagonist and phosphodiesterase-5 inhibitor medicines for dual therapy will be subsided by the PBS for people living with PAH experiencing World Health Organisation Functional Class (FC) III or IV symptoms. This decision comes following recommendations by the Pharmaceutical Benefits Advisory Committee (PBAC). With input from consumers and health professionals, we make submissions to the PBAC to advocate for timely and equitable access to treatment and medications. In recent years, as a result of our submissions, there have been a record number of new listings on the PBS for the treatment of lung disease and lung cancer. To stay informed and contribute to our submissions, talk to our team about subscribing to receive our email communications.
To find out more about our advocacy program and ways you can get involved, visit lungfoundation.com.au or free call 1800 654 301.