05/11/2014 12:54 pm ET Updated Jul 11, 2014

CML Is Not Yet Cured: Reaction to the #OneDown Campaign

The word cure evokes powerful images of treatments ending, and a survivor stepping away from the carnage to begin a new life. It is the hope many cancer patients reach for. It is the prayer many family members and friends say. It is also incredibly hard to attain with a chronic illness.

This is why OHSU sparked outrage this week when they began their One Down Campaign. The Knight Cancer Institute, which facilitated the discovery of a drug commonly known as Gleevec to treat chronic myelogenous leukemia (CML), is raising money for further research. However, the information they originally used to raise those funds was faulty. CML is not a cancer that has been cured.

For those of us with CML, we know the word cure currently doesn't fit the majority of our circumstances. 13 years ago a drug (Gleevec) was created that changed CML from a nearly inevitable death sentence, to a chance at survival. This drug, unlike traditional chemotherapy which had little effect on the disease, targeted the specific menacing cells and kept growth at bay. It was labeled the miracle drug, and for many it is. This drug, and those like it, can make the disease undetectable in some patients for an indefinite amount of time. Sure it comes with side effects ranging from rashes to pulmonary embolisms. The costs can reach into the $10,000 a month range. However, as long as the medication continues suppressing cancer cell growth, it is considered successful as first line treatment.

The medications do not work for everyone, unfortunately. Patients unable to reach milestones on the medications are tracked towards bone marrow transplants. Bone marrow transplants sometimes work as a cure for CML. This is where the word cure can apply for an otherwise chronic condition.

For the rest of us, the trouble with managing a cancer with a daily drug is that resistance can happen, it may not work for some people, and the side effects can be devastating. When the medication is working, the cancer may be held at bay, but it is still there. We talk about it like a ticking time bomb, never knowing when the miracle drug may stop working for us. We have to learn to accept living with uncertainty. We constantly explain to insurance companies, relatives, and co-workers that the word cure is not currently available to us. This is a difficult concept for many people to understand because chronic cancers are rarely talked about.

The fear many CML patients have over the original campaign by OHSU is based in outside understanding. For those who do not live with this cancer, there may be an oversimplified belief that it is indeed cured, when it is at most managed through expensive and life-long drug therapy.

From discussions with numerous other CML patients, the medications seem to react differently for different people. There is a growing question, in our community, about how the drugs react in men verses women. Also, the long term effects of using this drug on a daily basis. It is confusing how some patients on the drug are able to go about their lives with small changes, and others are debilitated. There is a huge range of patients along the spectrum of CML, very few receiving the coveted title of cured.

The idea of one cancer being knocked off the list (One Down -- many to go) is a huge draw. We understand why this marketing campaign was chosen. We do not give up hope that there will one day be a cure for all of us. However, that day is not today. Progress has been made with CML, as it has in other types of cancer. However there is further to go to reach the highly coveted cure.

For more information on CML, please visit the National CML Society website.

Update: The campaign listened to the voices of CML patients and removed the term "cure" on May 8th.