“Facts are Facts and Will Not Disappear on Account of Your Likes”*

“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passion, they cannot alter the state of facts and evidence.”

~John Adams, from The Portable John Adams

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I’ve always loved this quote, and it seemed the perfect way to begin my newest blog postings on the American Journal of Managed Care (AJMC)’s Contributor’s Page.  Those who regularly read my blog here know that in my roles as a cancer research advocate, patient, and cancer survivor, I’m always deeply concerned about anything that interferes with evidence-based, patient-centered clinician and patient decision-making.  This includes governmental mandates that are not rooted in the science, but rather, stem from political ideologies, agendas, or biases–as well as misleading, inaccurate, or overly simplistic dialogues about complex medical topics in the popular media that may lead folks to make potentially dangerous decisions about their health due to such misinformation.  I’m similarly concerned when the facts surrounding such complex information become inadvertently buried due to passionately held opinions or, far too often, purposefully due to inconvenient facts that are contrary to one’s mission or agenda.  That’s why I found it so important to express my concern as a patient advocate about the newly proposed Medicare Part B Drug Payment Model regarding its level of transparency and the evidence.  This is a critical issue, where it’s important for all Americans to get past the noise, emerge from the avalanche of misinformation, and learn the facts about this proposal, one where the first part of this Medicare experiment is deeply flawed (and, IMHO, should be completed eliminated), yet the second portion proposes value-based pricing when appropriately supported by high-quality evidence, including published randomized controlled trials, reviews, or evidence-based clinical practice guidelines.  Thus, I hope that you’ll click below to read my three-part series at the American Journal of Managed Care, entitled:

“Facts are Stubborn Things: the Medicare Part B Experiment, a Patient Advocate’s Perspective: Part I”

“Facts are Stubborn Things: Part II”

“Facts are Stubborn Things: Part III”

(*The quote that forms the title of this posting is from Jawaharlal Nehru, leader of India’s nationalist movement, India’s first prime minister after its independence, and Indira Gandhi’s father.)

 

Cancer Immunotherapy: a Patient Advocate’s Perspective

Over the last few years, months, and weeks, we have seen an increasing number of headlines pronouncing immunotherapy as the most exciting development in cancer treatment in recent memory.  Yet what is striking to many is that these discussions are not solely taking place throughout the popular media.  Rather, immunotherapy is more and more frequently becoming a major topic among oncologists, investigators, government agencies, academia, patient advocates, industry, and other stakeholders–where some express genuine excitement and others weigh in with cautious optimism concerning its potential promise.

Yet despite the optimism, the field is still very much in its infancy, and the evidence is still emerging.  As a cancer research advocate, a key part of my role is focusing on the state of the evidence and the implications for patients, ensuring that scientific information is presented clearly and realistically, and raising the need for caution in increasing the hopes of patients when such data is still “in early days.”  In other words, because the encouraging results for some patients with previously resistant disease have been widely heralded in the popular media and since immunotherapy is in fact an increasingly active area of research, it is critical that cancer patients and their loved ones truly know what to expect from immunotherapy.

So when I was recently asked to contribute a new article for the American Journal of Managed Care and Evidence-Based Oncology  from the perspective of a patient and cancer research advocate, it was immediately clear that the following would be my next topic: “The Promise of Cancer Immunotherapy: Why Patient Education is Critical.”  So please click here to read this most recent contribution, and consider sharing it with other patients, advocates, caregivers, and healthcare providers concerning the current realities of cancer immunotherapy, the remaining questions, and why long-term follow-up and continued research is so critical with a much larger number of patients to obtain the mature data needed regarding safety, efficacy, potential adverse effects, durability of beneficial response, and impact on patients’ overall survival.

 

 

“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.

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.