Sticks and stones may break my bones BUT…

sticks-and-stonesFor many of us, it is easy to finish the phrase “Sticks and stones may break my bones but words can never harm me.” This children’s rhyme, attributed to an 1862 publication of the African Methodist Episcopal Church, was meant to encourage any victim of name-calling to ignore the taunt, avoid retaliation, and to remain calm and good-natured. While the phrase is typically reserved for consoling someone who has been called a name, it also serves to remind us that words can sometimes cause great damage. Even when words are not intended to cause damage, they can still inflict pain or serve to belittle our situation.

Recently, a single word brought an outcry from the CML community when a well-meaning research institution used the word “cured” to refer to an amazing accomplishment that changed the course of history for anyone diagnosed with Chronic Myeloid Leukemia. While that accomplishment, the development of the first targeted cancer therapy, has transformed a once highly fatal disease into a treatable form of cancer, it has NOT cured CML.

So, what IS so offensive about the word “cured?” At first glance many might see this word as a reason to celebrate, especially when used in tandem with the word cancer. Granted, when a cancer is cured, there is, or will be, plenty of reason for celebration. Unfortunately, when it is used to hype a promotional opportunity, it serves to erode years of progress and has the potential to set us up for future problems.

All things considered, how might implying that CML is cured impact us negatively in the future? First, claiming that CML is cured minimizes our experience and brings confusion to our family and friends. This same confusion might even cause the public to wrongly assume that anyone who has experienced good treatment results is no longer impacted by the disease and is therefore “playing the cancer card” for personal gain. Secondly, it sets up false expectations for the newly diagnosed or patients who are not adequately educated about their disease. This can lead to a lack of diligence in beginning treatment or hinder one from properly following their treatment regimen. Some may go so far as to discontinue treatment by choice, although for most, it is a necessity. While there is new research suggesting that some individuals may be able to stop treatment for extended periods of time, for most patients it is a life-long commitment.

While public opinion, confusion, and lack of education are very serious problems, we can often shrug off the opinions of others (granted, it might not be easy), help our family and friends understand more about the disease and, through educational resources and support, develop our own strategies for living well in spite of CML.

As time passes and we move further from the days when CML was typically a terminal diagnosis, complacency, lack of understanding or lack of respect for the seriousness of the disease have the potential to create issues both today and in the future. Some of issues may not be readily apparent, especially to members of the general public and healthcare community. “Well, what are these issues?” you might ask. Here’s some food for though: If a disease has been “cured” through a modern medical miracle, is there a reason to continue to treat patients who no longer show evidence of the disease? Will insurance companies continue to cover ongoing treatments for a disease once it has responded well to treatment and is no longer detectable through current testing methods? Where do we draw the line? Hey, you’re cured right? You don’t need anymore treatment, right?  WRONG!

“Cured” is not the ONLY word that can be problematic. Similar issues arise when the public and medical community uses the word “remission” to describe an undetectable “response” to CML therapy. While according to Webster’s and other dictionaries the word is technically correct, the public’s definition of remission is akin to one having completed their cancer treatment and are now cancer free. As members of the CML community, we may understand how the word applies to the disease, but does the person on the street or the decision makers responsible for determining our treatment and its coverage understand?

Not a day goes by that I’m not made aware of some issue regarding access to, or coverage for CML treatment. Many of these issues can be traced back to misconceptions of how CML is treated and controlled. Insurers and government medical programs are always looking for ways to cut costs and what better way than to no longer cover medications for people who have been “cured” or are in “remission” from their disease.

One of the more common threats to treatment coverage affects those who rely upon their state’s Medicaid program. Every year, these state run programs review the treatments offered through their plan. While we know that program managers have a responsibility to regularly review their processes and program benefits to assure cost effectiveness, the problem for CML patients who rely on Medicaid is that many times, CML medications are the first to appear on the strike list for removal. For a number of years your NCMLS, along with other organizations, has regularly petitioned these individual state programs to continue to include CML drugs as part of their plan. Every year it becomes more challenging to convince review boards that CML still requires ongoing care, although the disease may not be detectable with the most sensitive tests. Even when the disease can no longer be detected, one may still be dependent upon lifelong treatment. My fear is that if ONE state ever succeeds in removing CML drugs from their formularies, a domino effect will occur and other state plans will follow suit.

What about generics? There are potential issues that need to be watched closely and center around how insurers will cover our CML treatments once a generic is available in the United States. Several months ago, I had the opportunity to meet with a number of the largest insurance companies/payers in the US. The goal was for the companies to gain a better perspective on the needs of the CML community and to discuss how they planned on covering CML therapies once generics become available. At the time, the most common plan involved a “fail-first” policy meaning that they would only cover brand-name CML drugs once someone had experienced a drug failure on a generic.  On the surface, this seemed to make sense to all the insurance companies, especially when the cost of long-term treatment was considered. What they failed to understand is that newer drugs have the ability to drive stronger and deeper responses allowing one to see their disease quickly brought under control. Achieving stronger responses in a short amount of time can go a long way to ensure one’s CML stays in check and does not progress. While it is no guarantee that one won’t experience difficulties with the disease or that it won’t progress, it is a compelling argument. Taking that into consideration, could it be that it might be more cost effective to treat newly diagnosed CML with those therapies that have shown, time and time again, to drive the deepest responses and then once the disease is no longer detectable, use a generic as a maintenance drug? Who knows, but it is certainly something that needs exploring.

There has been hope that the Affordable Care Act, a.k.a. Obamacare will ease the burden that many Americans face when it is possible that they will have to take a high-cost, life-long therapy for their CML. Whether it will ease that burden remains to be seen. While the act calls for a minimum of 11 atineoplastic drugs to be covered under the plan, CML drugs (which happen to fall into that category) have been placed in yet another specialty tier which limits their coverage. Add deductibles, co-pays, and the fact that some state exchanges have no maximum out-of-pocket expenses and they can still be far outside the financial reach of many, if not most people living with the disease.

This blog post doesn’t even begin to scratch the surface when it comes to issues that face our community. There’s the parity issue which the NCMLS has been a strong player in seeing parity legislation adopted in many states. There’s also the Access to Treatment Act to consider. One thing is certain – with insurance payers nationwide looking for anything to strengthen their argument on limiting or excluding coverage for CML drugs, referring to CML as a disease that has been cured or that it is “functionally” cured (as the medical community likes to say) fuels their fire, strengthens their fight, and weakens our ability to get the care we need.

The events of the past week or so have served to motivate our community to speak out. That is great, but much more must be done. I hope that you will begin to learn more about the subtleties of CML and its treatment so that together, we can better educate those around us and help minimize the impact misconceptions can have on our future.

For more information on CML, its treatment and more, visit The National CML Society website.