9/22 represents the genetic change of Chromosomes 9 and 22 that is the cause of Chronic Myeloid Leukaemia (CML).
Since 2008, patient organisations around the world have initiated events and projects on “CML Awareness Day” on September 22 to raise awareness of the needs of patients living with CML. Since 2011, the worldwide community unites to celebrate “World CML Day” on that date.  – from CML Advocates Network

Sitting down to write a post for World CML Day, even if there are only a few hours left, is always a daunting prospect. Ultimately it’s not just one day for patients, but I understand the sentiment. For patients like Khalid Younis it brings more attention to his cause to get the drug (ponatinib) he deserves – you can read his story here.

So, when it came to writing I was in danger of either repeating myself or simply bashing governments and organisations again. PING. An email arrives. It’s a blog post from my good friend Greg Stephens, the executive director of the National CML Society in the US. Greg is one of the good guys, a really good guy. That’s the thing about CML, it brings people together. I would be a poorer person for not knowing Greg. His fiery determination, humility and wit makes for great company which come in handy when the sensible people have gone to bed at conference.

His blog post was a complete inspiration and I asked him if I could post it here, he said yes in the most beautiful way. Here it is, he said things I wanted to say in a much better way. Cheers Greg x

Kris

Some things to ponder on World CML Day
by Greg Stephens

Today, 9/22, is a day that is 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 seven years, today’s 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:

  1. Eighteen! Today, 18 people will be diagnosed with CML* in the United States. There will be 18 more tomorrow and the next day, and the next….all throughout the year.
  2. For the majority of those people, their CML will be brought under control with treatment, however, a small portion will not have that experience.
  3. 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.
  4. There is no “GOOD” leukemia. Did I just say “GOOD” and LEUKEMIA in the same sentence?
  5. Side effects are an ever-present reality that impedes many patient’s daily lives.
  6. Drug parity legislation and fair access to oral chemotherapeutic drugs at a national level is needed, now more than ever.
  7. 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.
  8. Quality of life issues are widespread and more attention must be focused on addressing them.
  9. Learning about CML from reputable resources and becoming knowledgeable about the disease is imperative for anyone diagnosed.
  10. 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.

Greg

WCMLD