"Words can provide hope and inspire people to action. They can also evoke powerful emotions. In launching a campaign to raise funds for cancer research, we saw a message of hope and a rallying cry to spark engagement from people. Some in the CML community—a community we consider of vital importance to our efforts—disagreed.
We've heard from CML patients who feel the word ‘cure’ used in the campaign takes focus off the challenges they face. Some have side effects from therapy, concerns about their medical bills or fears of what will happen if the treatment stops working. Some even feel marginalized by those with other cancers who express that they should feel “lucky.” And there is worry that we may imply that no more progress is needed in treating CML.
We understand, and apologize. We’re making significant changes to our campaign. We encourage your constituents to revisit our website to see the changes we’ve made there. We’re focusing our message on those concepts that are more universally accepted: that we have revolutionized the treatment of CML with Gleevec® and turned a deadly cancer into one where life expectancy mirrors that of the general population.
In making this decision, I share the following thoughts.
I see patients every week in clinic who alert me to side effects they are experiencing. Many of these side effects can be addressed. For the majority of CML patients, with good medical management, individuals can not only survive, but have a good quality of life. I was concerned by the number of posts I saw that seemed to indicate otherwise. I urge patients to please talk to their medical providers about side-effects and other concerns so they can help. I also want to assure the community that my lab continues to work on CML in an effort to find better therapies and ultimately a way for all patients to safely stop treatment.
I also encourage people to recognize that there are many different perspectives. Every person’s cancer journey is different. We need to embrace these perspectives. Those who feel cure is the right word for their experience should be as respectfully treated as those who do not.
We want to be transparent that we plan on retaining our website and tagline, onedown.org. This idea is core to our goal of funding research. With Gleevec, we’ve created a life-saving treatment, and we want to discover more Gleevecs for more cancers. We want to move the conversation from cancer awareness to making cancer the victim. To do this, we must let people know that there has been a significant victory in that battle, regardless of the word one uses to describe it. We hope this is a position everyone can support.
Brian J. Druker, MD
Director, OHSU Knight Cancer Institute"