Same cancer, same drug but our access to treatment was anything but consistent

They’re three women all battling an incurable type of blood cancer, but Neda, Nikki and Shirley have felt hardship in very different ways.

Before lenalidomide was listed on the PBS, the breakthrough medicine could cost more than $194,000 for single course of treatment.

But it was an option that could help these three Australians to prolong their disease in remission.

Unable to pay the $1,000 monthly cost, Neda Masters (pictured above) from Queensland was on the verge of moving to America where she could get affordable access the drug.

The 46-year-old mum said: “We didn’t have a choice. Thankfully, my husband had a job lined up but I didn’t know what I was going to do if my family couldn’t live and work in America with me.“

Getting access to the best treatment was going to come at huge cost. We were unable to make the move to America because of the COVID-19 pandemic.

“Thankfully, the PBS listing in March means I can access the drug here at an affordable price.”

Nikki Wagner from New South Wales could only initially afford three boxes of lenalidomide, calling them her “princess pills” with each small tablet costing around $250.

Thankfully, her brother intervened and raised the $18,000 needed to start maintenance on this drug.

The 56-year-old said: “It cost about $5,000 for each box of 21 tablets. There was no way we could continue to afford them.

“However, following the initial costs outlayed, I was told I would be getting the drug on compassionate grounds through the drug company. From then on, I was able to get a box for less than $8, a life-changing discount.”

Shirley Irwin was not so lucky. The 71-year-old from Victoria used $54,000 from savings to pay for her lenalidomide which she took for eight months.

The mother-of-two said: “I’ve had some difficulty coming to terms with spending the kid’s inheritance on this medication. But they assured me, ‘we don’t want the money, we want you’.”