VIDEO: Understanding survivorship in patients with CML

Editor’s note: This is an automatically generated transcript. Please notify editor@healio.com if there are concerns regarding accuracy of the transcription.

I just saw this past weekend, self-described longest survivor of Gleevec (imatinib, Novartis). He was patient number one or number two on the initial imatinib trial. And you know, is fabulous. He's an LLS advocate. He went with us to Capitol Hill last week to advocate for children's cancer research. He's doing terrifically. And he started on it because he was diagnosed at a time when the lifespan was five years and he's, you know, 25 years out. That is miraculous and most people are able to stay on their medication and live a really normal life. All that to say, there are people that don't tolerate the tyrosine kinase inhibitors. There are people who develop mutations that require shifting to a different tyrosine kinase inhibitor. And you know, we are trying to understand who are the people. And this is going to be a long process. We have some good idea based on molecular remission who can get off medication for a while, you know, who can take a drug holiday. But you know, there's lots more to learn about that and there's more to learn about why some people have side effects and others do not.

And so I think survivorship means, for many, lifelong watching and lifelong medication, sometimes with some breaks. And always the worry of, could I develop a mutation? Could I stop responding to the thing that's keeping me, you know, keeping me alive? The other piece is that tyrosine kinase inhibitors are expensive and even though imatinib is generic, the price is still considerable. And financially, there are many people who can not afford to take the medication the way it's prescribed. And we know that taking it the way it is prescribed is what gets you into molecular remission, right? And an incomplete remission makes it more likely that you will develop mutations and need to switch or, you know, get blastic disease, which can be fatal. And so there is a real crisis in terms of cost and access. We should not just write the prescription and hope that our patients are taking it because many patients don't tell their doctor that they're only taking it every other day or that they can't afford their medicine.