Breakthrough drug for rare disease joins the Pharmaceutical Benefits Scheme
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In the realm of healthcare, few things can be as heartening as witnessing the transformative power of modern medicine.
For Australians living with rare genetic conditions, a new dawn has arrived with the listing of a life-changing drug on the Pharmaceutical Benefits Scheme (PBS).
The von-Hippel Landau disease (VHL) is a rare, merciless adversary often leading to cancerous, disabling, or debilitating growths.
One of its cures, Welireg, works by crushing tumours brought by the disease.
Patients with this rare condition often had to shell out $12,000 a month for Welireg and other related treatments.
Fast forward to today, the lives of approximately 300 Australians with VHL have been profoundly altered.
Welireg was added to the Pharmaceutical Benefits Scheme in early December—effectively giving patients emotional and financial reprieve.
Melbourne local Simon Goodrich encapsulated the struggle and relief experienced by VHL patients.
Goodrich, who has endured more brushes with mortality than most, underwent eight surgeries by the age of 42.
Goodrich's battle with von-Hippel Landau disease began when he was 26.
His severe headaches during his honeymoon led to the discovery of a brain tumour the size of a golf ball.
A decade later, he faced another grim diagnosis: tumours growing in his spine at an alarming rate.
Welireg, however, proved to be his ally, as it shrank the tumours rapidly in size and number.
For seven weeks, Goodrich paid the full price for Welireg.
Now, thanks to PBS, the cost has plummeted to around $1,000 a month.
Goodrich, also a father of two, also expressed his relief that his children have not shown signs of the condition.
'Hopefully, it starts and ends with me,' he shared.
In contrast, Amelia Clare and her sister Greta have known the hereditary nature of VHL all too well.
They lost both their mother and sister to the disease.
Thanks to the PBS inclusion last December, Greta received early access to Welireg, which allowed her to forgo kidney surgery and enjoy the Christmas festivities.
The sisters celebrated not just Greta's positive results but a brighter future for their children—four of whom have inherited VHL.
Amelia's eldest son, Xavier, may have fertility problems later on due to Welireg’s side effects.
Yet, the family finds solace in the knowledge that he could begin treatment without hefty costs.
The Pharmaceutical Benefits Scheme spends $20 billion annually to ensure that life-saving medications are affordable for all who need them.
With 900 medicines listed, countless lives have already been touched.
Some of the medications recently added to the PBS were the diabetes treatment Sidapvia and the immunotherapy cancer jab, Tecentriq.
On the other hand, the eczema medication Dupixent was at risk of removal from the scheme.
However, Health Minister Mark Butler closed a deal to keep the medication in the PBS and its long list of medicines.
Meredith Cummins, CEO of NeuroEndocrine Cancer Australia, highlights the significance of this development for the VHL community.
With access to Welireg, approximately 300 patients may now look forward to active, fulfilling lives, contributing to society, and enjoying a vastly improved quality of life.
It's a testament to the power of advocacy, medical innovation, and a healthcare system that prioritises the well-being of its citizens.
What do you think of this new addition to the PBS? Share your thoughts in the comments below. If you or a loved one are navigating a rare disease like VHL, consult with a healthcare professional first about the latest treatments and how to benefit from PBS.
For Australians living with rare genetic conditions, a new dawn has arrived with the listing of a life-changing drug on the Pharmaceutical Benefits Scheme (PBS).
The von-Hippel Landau disease (VHL) is a rare, merciless adversary often leading to cancerous, disabling, or debilitating growths.
One of its cures, Welireg, works by crushing tumours brought by the disease.
Patients with this rare condition often had to shell out $12,000 a month for Welireg and other related treatments.
Fast forward to today, the lives of approximately 300 Australians with VHL have been profoundly altered.
The Pharmaceutical Benefits Scheme is an extensive list of medicines offered for a fraction of a cost. Image Credit: Allette Systems
Welireg was added to the Pharmaceutical Benefits Scheme in early December—effectively giving patients emotional and financial reprieve.
Melbourne local Simon Goodrich encapsulated the struggle and relief experienced by VHL patients.
Goodrich, who has endured more brushes with mortality than most, underwent eight surgeries by the age of 42.
Goodrich's battle with von-Hippel Landau disease began when he was 26.
His severe headaches during his honeymoon led to the discovery of a brain tumour the size of a golf ball.
A decade later, he faced another grim diagnosis: tumours growing in his spine at an alarming rate.
Welireg, however, proved to be his ally, as it shrank the tumours rapidly in size and number.
For seven weeks, Goodrich paid the full price for Welireg.
Now, thanks to PBS, the cost has plummeted to around $1,000 a month.
Goodrich, also a father of two, also expressed his relief that his children have not shown signs of the condition.
'Hopefully, it starts and ends with me,' he shared.
In contrast, Amelia Clare and her sister Greta have known the hereditary nature of VHL all too well.
They lost both their mother and sister to the disease.
Thanks to the PBS inclusion last December, Greta received early access to Welireg, which allowed her to forgo kidney surgery and enjoy the Christmas festivities.
The sisters celebrated not just Greta's positive results but a brighter future for their children—four of whom have inherited VHL.
Amelia's eldest son, Xavier, may have fertility problems later on due to Welireg’s side effects.
Yet, the family finds solace in the knowledge that he could begin treatment without hefty costs.
The Pharmaceutical Benefits Scheme spends $20 billion annually to ensure that life-saving medications are affordable for all who need them.
With 900 medicines listed, countless lives have already been touched.
Some of the medications recently added to the PBS were the diabetes treatment Sidapvia and the immunotherapy cancer jab, Tecentriq.
On the other hand, the eczema medication Dupixent was at risk of removal from the scheme.
However, Health Minister Mark Butler closed a deal to keep the medication in the PBS and its long list of medicines.
Meredith Cummins, CEO of NeuroEndocrine Cancer Australia, highlights the significance of this development for the VHL community.
With access to Welireg, approximately 300 patients may now look forward to active, fulfilling lives, contributing to society, and enjoying a vastly improved quality of life.
It's a testament to the power of advocacy, medical innovation, and a healthcare system that prioritises the well-being of its citizens.
