We've Come a Long Way

I look at my calendar and I see a day to celebrate just about anything! I do have some favorites. January 1st is National Hangover Day for us Canadians - which is a good thing given our stout beer and a long night of welcoming in a new year. At my workplace, we celebrate National Random Acts of Kindness Day on February 17th. If you're in the drive-thru, don’t be surprised if the person ahead of you pays for your order on this day.

There’s one day that has been near and dear to me since my diagnosis of chronic myeloid leukemia in 2012. The CML Advocates Network describes this day as being initiated by patients and advocates in 2008 hoping to raise awareness of the disease. Global CML Day began in earnest in 2011 with the ninth month and twenty-second day representing the gene change between Chromosomes 9 and 22 that causes this disease.

I feel incredibly blessed to have survived this disease for a decade and counting.

Survival rates of CML

When I look back at the survival rate of CML over the years, I see big differences. 50 years ago, a CML patient could expect to live 3-5 years. That improved to 7 years in the late 1990s. By 2001, the vast majority of patients survived past 7 years. Today we have a 10-year survival rate and we expect that a CML patient will be able to live almost as long as anyone else. It hasn’t been done yet, but we are getting there.

CML is survived when patients have been prescribed the right medication and are able to comply with daily therapy. According to the Canadian Cancer Society, about 40% of people in my country will survive less than five years. I wonder why that is? Why are survival rates not the same everywhere?

CML patients need access to treatment

I looked to the US Library of Medicine to find answers. A study by the US National Institute of Health found that high drug prices may be the single most common reason for poor compliance and drug discontinuation by CML patients. CML survival rates are getting better, but they only apply if CML patients can get access to treatment.

According to the US National Institute of Health, medical illnesses and drug prices are the single most frequent cause of personal bankruptcies in the United States. Here in Canada, different provinces have different costs associated with CML treatment. Not everyone has to pay out of pocket, but many do, depending on where we live. CML treatment is expensive worldwide. In many countries, only a minority of patients can afford access to CML drugs.

World CML Day is on my calendar. It's still about awareness and we’ve come a long way. This disease is treatable and surviving with treatment is possible. We wear an orange ribbon to remind us that we still have a long way to go. Now that we have treatment we need accessibility. There is zero survival without it.