*UPDATED 9/22/17 – This blog post first appeared in September 2105.
Today, 9/22, is a day known well among those of us in the CML community. It’s a day set aside for awareness activities and a time to call attention to the many challenges faced by anyone living with Chronic Myeloid Leukemia. Over the past ten years, awareness initiatives have grown in scope, rising from the first CML Awareness Day in Canada to a global emphasis. Right now, activities are going on around the world and key issues are being discussed. So, what are some things to consider on this day set aside as a day of awareness?
First off, it’s not for us. While we benefit from raising awareness, the true purpose for promoting blood cancer and CML awareness (year round, actually) is so the public and those who know nothing about blood cancers can learn more about this group of diseases, recognize the amazing progress that has been made through medical research, have a better understanding of the realities of blood cancer, and dispel myths and misconceptions that may exist. For those of us in the CML community, it’s an opportunity to share our “reality” – truths if you will – with friends and family, medical professionals, the makers of our treatment drugs, and countless others who need to know just how much CML impacts one’s daily life. While there is focused attention on CML, we have a great opportunity and responsibility to create awareness for those outside our community.
Here are a few things to think about:
- Twenty-four! Today, 24 people will be diagnosed with CML* just in the United States alone. There will be 24 more tomorrow and the next day, and the next….all throughout the year.
- For the majority of these people, their CML will be brought under control with treatment, however, a small portion will not have that experience.
- The current costs of our CML treatment drugs are unsustainable and many, even WITH insurance coverage and other assistance, are suffering financial ruin as a result.
- There is no “GOOD” leukemia. Did I just say “GOOD” and LEUKEMIA in the same sentence?
- Side effects are an ever present reality that impede many patient’s daily lives.
- Drug parity legislation and fair access to oral chemotherapeutic drugs at a national level is needed, now more than ever.
- Some may be able to achieve a treatment-free remission (TFR) and go months, even years without treatment. Others will be dependent upon treatment for their lifetime.
- Quality of life issues are widespread and more attention must be focused on addressing them.
- Learning about CML from reputable resources and becoming knowledgeable about the disease is imperative for anyone diagnosed.
- We aren’t “finished” with CML – we not only need curative research to continue, we need it to increase.
This list could go on for countless pages and not even begin to cover all the things our community deals with on a daily basis. You probably have a list of your own. It may seem overwhelming, but together we can bring greater awareness to these and other realities we face every day. To succeed, we must look beyond ourselves and our community and boldly speak up so that those who minimize the life with CML or know nothing about it will know the truth. Yes, great things have happened and will continue to happen for our community, but much work remains.
I hope you will join us in making a difference for anyone living with CML.
*based on the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program CML facts for 2017.
– Greg Stephens is the Founder and Executive Director of the National CML Society and works year-round raising awareness and addressing the impact CML can have on any family facing the diagnosis.