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Living with Metastatic Breast Cancer: An Open Letter to Any Insurance Company

Living with Metastatic Breast Cancer: An Open Letter to Any Insurance Company, Photo by Melanie Mathieu

It has been over a year since our interview with metster, Cindy Barka. The members of Living with Metastatic Cancer in Canada refer to themselves as metsters or metavivors.

Last summer, the treatment Cindy was on for metastatic breast cancer stopped working. Her cancer had progressed. She was switched to a different medication to hopefully slow down the progression. With that come the inevitable side effects and applying for coverage for the new combination of drugs. Medications, especially for metastatic cancer, are expensive, very expensive.

When I checked in with Cindy in September, she was going through the difficult and painful adjustment, both physically and emotionally, to her new treatment protocol.

Cindy has written an open letter to any insurance company who will pay attention. This will give you an idea of her ongoing battle, not with the cancer, but with the insurance company.

Dear Insurance Company:

I have metastatic breast cancer or MBC with bone metastasis. MBC has a 100% mortality rate. We, who have MBC, will never get better despite the fact that we may have outlived our original prognosis.

Every six months to a year, you send me Employee Status Report forms and Condition Impact Questionnaires to determine whether or not I am doing all that I can to improve my situation and to see if I am able to return to work, and most importantly, under the veiled threat of assessing my disability claim.

Throughout the years that I worked, my employer and I both paid into an insurance plan that included a long-term disability clause. That clause was negotiated by our union and is included to make sure that someone who is unable to work is not left destitute. Hence, the word “insurance".

While I understand the need to assess the merits of each case, as there are long-term disabilities that may improve with medical interventions and time, it is a proven fact that metastatic cancer is not one of those cases. Need I say once again, “metastatic cancer” is 100% fatal.” It is a catastrophic disease and progressively gets worse.

Your questionnaires asking me what I do on a daily basis to improve my situation is completely offensive, like I have a choice as to whether or not I have a terminal illness, and that I have an option to make myself better and I may not be doing all that I can.

If I had a choice between this disease and returning to work, I can honestly say I would much rather be at work. I enjoyed my job, I enjoyed my co-workers. I would much rather be working towards retirement than trying to stave off progression and eventual death.

Whether I can bend, stand or vacuum for 10 minutes is irrelevant to my condition. “Please list or indicate all recreational activities or hobbies performed prior to your disability,” is a slap in the face each time I have to fill out this form. It is a reminder of all the things that I have lost to this illness.

I know that the Pollyanna’s of this world would look at it as an opportunity to see all the things that I can still do and on most days I would agree but when filling out these forms I experience PTSD like feelings or rather just PTSD. I get to review in detail all the things that I’ve lost and have my condition questioned by an outsider who could never hope to understand what it’s like to live knowing that you are dying.

I once received a letter with the sentence “You have exceeded our life expectancy clause. Please have your doctor complete the attached forms”. It took me a while to realize that you were actually asking why I wasn’t dead yet as my original prognosis was 22 months.

Dear Insurance Company, I think it is definitely time that you update your forms and questionnaires to appreciate, and be more sensitive to, those with a terminal illness.


Cindy Barka, Photo by Melanie Mathieu

Cindy Barka

Cindy is now into her 8th year of living with metastatic breast cancer. As she mentioned in her letter, her initial prognosis was 22 months, less than 2 years, so she has filled out many Employee Status Report forms and Condition Impact Questionnaires. One would think after the first set of forms, corroborated by her oncologist, she would be able to simply live out her life without the threat of having her disability claim re-assessed. Instead of celebrating every half year or year that she continues to live and be a mom, daughter, sister, friend, she has to justify her existence.

We all pay into numerous insurance plans for most of our adult lives. We do this because “What if something happens?” We need to make sure we are covered so we don’t have to worry, at least financially. But then the unthinkable happens and not only do we have to deal with the physical and emotional trauma, we have to battle the insurance company for the right to receive the benefits we are entitled to, the benefits we paid for.

It’s time for insurance companies to change their ways and get out from behind their standardized forms and letters, their actuarial tables and charts, and move forward with a little empathy and compassion. That would, of course, require less emphasis on the bottom line and more focus on serving their clients.

Stay tuned next week to see Cindy’s creative side, that is when she is not busy with treatments, appointments, and filling out insurance forms. 

If you are a Canadian with metastatic cancer looking for peer support online in a safe environment that welcomes all genders and sexual orientation, please request to join this private group at Living with Metastatic Cancer in Canada. In Ottawa and other places across Canada, there are also in-person support groups which you can connect with via the online group.

Colleen Kanna is a breast cancer champion and creator of coKANna Designs, a line of bamboo knit, Canadian-made wellness wear for women. Five percent of online sales are donated to the Ottawa Integrative Cancer Centre in support of their Head Start Program for women newly diagnosed with breast cancer. 



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