“Financial Toxicity” of Cancer Treatment: Have You Been Affected?

During that indescribable moment when you first learn that you have cancer, many of us experienced a virtual avalanche of thoughts, worries, and raw emotions–or, for some of us, everything came to a standstill, and a thick fog seemed to drop from the sky, blocking all sounds and sights.  Or somehow, due to the mystery that is the human brain, both may simultaneously occur, as it did in my case with both of my cancer diagnoses.  When I received my first cancer diagnosis, my initial thoughts were stark terror, confusion, denial, the wish to turn back the clock, intense fear that I  wasn’t strong enough to handle the pain and terrible side effects that may come with my treatment, a sense that I’d ultimately get through this, deep panic that maybe I was wrong–and then came the self-protective haze to help cocoon me from these far too troubling worries.  But one thought that didn’t come to mind was concern that I wouldn’t be able to pay for the costs of my treatment.  After all, I was fortunate in that I’d just started working full-time shortly after graduating from college, and I was confident that my insurance would immediately provide coverage for these costs.  Silly girl: oh, how wrong I was.

For this month’s special edition of Evidence-Based Oncology’s “Cost and Value Edition,” I was asked to contribute a piece from my patient perspective concerning the financial toll that cancer treatment takes on so many patients.  As I began to compose the article, I found myself describing a soul-shattering confrontation I had with my insurance company as a stage III Hodgkin’s lymphoma patient at the age of 22–an experience I’ve never written about before since it was so upsetting, yet one that almost certainly will resonate with many of you who have been diagnosed with cancer.  But as I note in this piece, as terrible as that experience was, so many cancer survivors have gone through–and more and more are currently experiencing–far worse.  Because the fact is that due to the ever increasing costs of cancer treatments, particularly in this genomic era when the cost of one targeted agent may be upwards of $10,000 per month, such rising costs together with increasingly restrictive health insurance coverage, expensive deductibles, and increasing specialty visit and drug co-pays have created “financial toxicity,” an adverse effect with serious implications that may lead to changes in treatment-related decision-making, higher rates of nonadherence with oral chemotherapy drugs, and decreased overall quality and, potentially, length of life.

DMadden, EBO2

As I noted in the article, during this year’s American Society of Clinical Oncology (ASCO) Annual Meeting, I was struck by the fact that the phrase “financial toxicity” suddenly appeared to be on everyone’s lips.  I remember appreciating that this very real adverse effect of cancer treatment finally had a name—yet also thinking that though the term may be new, the condition itself was not.  Importantly, however, the crucial difference now is that an increasing number of oncologists, patients, advocates, and other stakeholders are speaking about this openly, honestly, and effectively and actively working on measures to prevent or better manage this serious toxicity of cancer.  Please click here to read my patient perspective in this month’s edition of Evidence-Based Oncology: “Financial Toxicity: a New Term, but Not a New Reality for Many Cancer Patients.”  And please consider sharing your thoughts here on this serious issue.

Sharing My Perspective as a Cancer Survivor with Cardiac Late Effects – in the June Issue of the “Evidence-Based Oncology” Journal

A few months ago, I received a message on LinkedIn from the Managing Editor of the journal Evidence-Based Oncology.  She explained that she had read my blog and was writing to ask whether I would consider contributing to their upcoming June issue.  The issue would be dedicated to the growing field of Cardio-Oncology, and she was requesting my contribution to provide a patient’s and advocate’s perspective as one who has personally experienced cardiotoxicity secondary to cancer treatment.  (Evidence-Based Oncology is a publication of The American Journal of Managed Care, a peer-reviewed journal dedicated to disseminating clinical information to managed care physicians, clinical decision makers, and other healthcare professionals in its aim to stimulate scientific communication in the continually evolving field of managed care. It serves as a platform for research, news updates, and opinions in the world of oncology that may impact healthcare access as well as coverage decisions.)

I greatly welcomed this wonderful opportunity to contribute to such a well-respected journal, particularly concerning the serious risk of developing late effects due to cancer treatment, a critical area that is at the heart of so many of my advocacy efforts. You can see my article on the American Journal of Managed Care (AMJC) website, and it was also posted today, June 1st, with the newly released June issue of Evidence-Based Oncology. I would be honored if, as a follower and/or reader of my Musings of a Cancer Research Advocate blog, you would take a moment to read my article on the Evidence-Based Oncology website and share it with your friends and colleagues, such as through Facebook, Twitter, or LinkedIn, to help increase awareness among patients themselves, their primary care physicians (so many of whom still know far too little about late effects of cancer treatment), and other healthcare providers concerning the very real risk of developing collateral damage from cancer treatment many years, often decades, following cancer treatment.  I hope that in some small way (or, even better, in a big way) that my and the other articles in this Cardio-Oncology series will truly make a difference in increasing understanding concerning this critical area for cancer patients and in reducing misdiagnoses / late diagnoses of and increased mortality due to these serious conditions.