Just over two weeks ago, we were delighted to hear at Myeloma Australia the changes to the pharmaceutical benefit scheme (PBS) listing for Pomalidomide (Pomalyst®). Whilst the notation was slight, the impact is sure to be far felt within the myeloma community.
Health Minister Greg Hunt spoke publicly of the news in Sydney on the 15th September, but I, as many of you I’m sure, missed this televised announcement.
Previously, people were not able to access this oral myeloma treatment, unless they were previously refractory to Bortezomib and Lenalidomide. Meaning, the myeloma had to have gotten worse whilst on treatment with these therapies.
Whilst this was okay for most, there are a group of people with myeloma who are not able to tolerate these medications due to significant side effects. These people need to stop their current treatment and change to another therapy. For these people, options may be limited and at an already stressful point, this lack of opportunity can be very difficult. Having the opportunity to try a different therapy, one that is easily orally administered, and gives hope whilst minimally interfering with quality of life, is a win for all.
The balance between treating the disease, and enjoying the time in each day, is a challenge for all people with cancer, but I see it especially reflected in the myeloma community. I am in awe of the people I meet who find a way to have balance in difficult times, they are in inspiration to all of us.
Though grateful to the government for making these changes, I am also grateful for those who played a role in making the voice of people with myeloma louder. Our advocacy team at Myeloma Australia, in partnership with the Medical Scientific Advisory Group (MSAG), personally wrote to the PBS, raising the profile and highlighting the need of those with limited options. This type of advocacy regularly happens behind the scenes and I find it is an often-overlooked way in which we support the myeloma community.
Prior to joining the Myeloma Australia team, the rules and regulations of the PBS were not at the forefront of my mind. I’m sure many of you were the same before you stepped on your myeloma journey and realised the sheer complexity of this landscape.
I warmly wish those who now have access to another weapon in the fight with myeloma, and hope this announcement brings hope and light in a sometimes dark place.
Laura Jones – VIC Myeloma Support Nurse