I am immensely grateful for the treatment advancement Gleevec represents. I am even more grateful for the percentage of patients who do so well managing their CML using this drug, and experience so few side effects, that they and their caregivers feel comfortable using the word cured. I wish everyone with CML fell into this sub-category, but sadly that isn’t the case.
I am disappointed they chose to continue using the “onedown” tagline for this. It’s disheartening to see one of the flagship research facilities, and arguably one of the most prominent researchers in this disease field, make a choice to use the largest advancement in the history of cancer treatment in a way that is misleading at the expense of the most vulnerable members of the CML community.
I understand the hype and the marketing and the “provocative” campaign angle. It’s just never going to feel good when your patient is the one being marginalized. I completely understand WHY it was done. I just don’t agree with the methods for this particular campaign. It’s a very good cause with an unnecessarily divisive strategy.
I am the caregiver for a CML patient who is a statistical outlier in the worst possible ways. He has more than one mutation. He is unable to achieve a response to standard therapy. He has no matching donor for transplant. The thing I think most people who haven’t walked in our shoes fail to understand is that life as an outlier is very hard, and sometimes the most difficult aspects of it come from interacting with other patients and caregivers. You fight to be taken seriously, to have your situation understood, to have your patient matter. You struggle with unkind and insensitive comments about whether you’re “doing it wrong” or whether your struggles matter since so many others aren’t experiencing them. You listen to people muse aloud that perhaps your patient wasn’t compliant with their medication therapy. You watch people take for granted the very thing you’ve so desperately prayed for, the result you’ve sold your home, your life and your sanity to try to achieve. We’ve experienced all of that and more, and we’re not alone. We may be a smaller percentage of the CML patient population than those helped by Gleevec, but “smaller” shouldn’t mean “insignificant”.
I have always been confident we could count on the researchers to understand our place. Our position within the CML data pool. This situation makes it feel like that was a false sense of confidence.