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A Glimpse into Cancer and Health Care

July 21, 2014

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This is a letter I just wrote to New York State appeals board trying to get genome testing covered by my insurance company.  They have denied my claim and have said the testing has been deemed “unnecessary.” I can not understand how they can use this phrase- testing will only be deemed unnecessary when they find a cure for cancer. Unless I am mistaken, they are still not there yet.

I try to look at my cancer as a struggle I am facing, I never think of it as a battle. I can’t think of battling my own body, I am trying to heal it.  With that being said, I am subjected to constant battles with my insurance company, which adds an incredible amount of emotional and financial stress. For anyone who is facing a deadly disease, to have to add on the stress of facing insurance bureaucracy  is incredibly challenging. Here is my letter to New York State:

 

To Whom It May Concern,

As I sit here, trying to figure out the words to put on the page, the first thought that comes to my mind is, I am doing all I can, everyday, to try and save my life. When I found out about Foundation Medicine this past September, I was ecstatic. I have stage IV colorectal cancer; diagnosed at 33 years old in April of 2012. When this all began, the odds were, and still are, against me. The five-year survival rate of Stage IV colorectal cancer with metastases to the liver is less than 3%. The odds of me going into full remission are slim to none and the odds of me being able to live a good life moving forward seemed grim as well. I, from day one, have refused to buy into these statistics and refuse to believe there is no hope for me to live fully with this disease or even possibly reach remission one day.

Over the past two years, I have done it all. Chemotherapy, surgeries, radiation, medications and an entire overhaul of holistic and integrative medicines. I spend my time researching, exploring and working with organizations to think outside of the box in cancer care and look into what the future of cancer treatments may be. Then, genome testing came onto my radar. I did months and months of extensive research before deciding to work with Foundation Medicine. There are many companies out there doing this, but Foundation is at the top of their field in my book. I do not make decisions lightly, especially when my life is literally on the line. Each step I take, is truly either in the right or wrong direction-the heaviness of these decisions is something I wish no individual would have to make in their lifetimes, but I am dealing with the cards I have been dealt and making these difficult decisions on a daily basis.

Working with my oncologist and my team of doctors, we agreed that finding out the information Foundation Medicine could provide us with is imperative in my cancer journey. To be able to look at my tumor, dissect it and test it against all the possible treatments that are out there in the medical world- what an incredible opportunity! The options right now for stage IV colorectal are so limited and if there are other options out there, both traditional treatment options as well as treatments for other cancers that may be effective for my cancer but have not been approved yet, well why would we NOT explore this and hopefully find the right needle in the haystack? Each cancer and all its subtypes are so unique. The way each colorectal cancer spreads, changes, shrinks, grows…there are no two identical. So how can one or two combinations of drugs cure such different variations of colon cancer? Obviously, this is not the answer. If it was, well, wouldn’t cancer be cured?   Individualized treatment plans and various drug combinations, immunotherapy and other innovative treatment designs are the future of cancer care- I believe this in my core. The results we received from the Foundation Medicine study are remarkable and are in our future line of defense and I feel blessed to have more options on the table.

When I opened the rejection letter and read, “The services are not medically necessary” I could not catch my breathe. Not medically necessary? It is medically necessary to do all I can and for my doctors to do all they can to explore ALL my options as to how to fight this deadly disease. It would be medically irresponsible to sit back and not think outside the box, it would be medically irresponsible to accept the statistics and roll over because the “traditional” treatment options are slim to none. On average, Aetna has denied a great number of the claims we have put in over the last two years. So, on top of living with Stage IV colorectal cancer, on top of maintaining my job as a Pre-Kindergarten teacher, on top of trying to manage daily life stress, on top of spending any little free time I have learning all I can about my disease and investigating all the options out there, on top of dealing with tons and tons of medical bills and payments…… on top of ALL of that, I somehow have had to make time to spend hours and hours on the phone with Aetna each week resubmitting claims, having Aetna delay scans, having scans cancelled last minute, having to prove why certain tests are “medically necessary”, having to prove why certain medications should only need a co-pay. Time is of the essence and I have lost many weeks because of the constant delays and denials. So, on top of   the stress of Stage IV cancer, I have an entirely ridiculous added amount of stress due to working with Aetna.

I know this letter is long and I know I may be rambling a bit, but I am going to give myself a pass on this one and say I have every right to stand up for myself, fight for my rights as a patient and push Aetna to be the type of health care provider I should be proud to have. In addition to sending this letter to you, depending on Aetna’s response to my claim, I will be sending a copy of this to a contact at the New York Times as well as the Wall Street Journal. The public has the right to know that on top of individuals having to battle life-threatening diseases, we face unnecessary financial and emotional battles each day in regards to our health care coverage and financial fragility.

 

Thank you for your consideration in this matter,

Kristen McRedmond

 

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