• The High Cost of Neulasta

    Each of the four times I received chemotherapy, the hospital billed my insurance more than $19,000. This covered several drugs, the process of infusion, and things like saline solution. (Hospital billed at $213, insurance paid $3.95.)

    Three-quarters of the price was from a single drug: Neulasta. Each round, the hospital charged $14,930 for “INJECTION, PEGFILGRASTIM 6MG.” The insurance company only paid $5,895. Even so, that’s a hell of a lot of money. So what’s the deal with Neulasta?

    Neulasta is not itself a chemotherapy drug. It is a bone marrow stimulant that tells your body to produce more white blood cells. This reduces the risk of neutropenia, the lack of neutrophils (white blood cells) that makes chemo recipients so susceptible to infection.

    Neulasta has some shitty side effects (bone pain), which I was lucky enough to avoid. But being less susceptible to infection is certainly a good thing, even more so in the age of COVID. So, yay Neulasta.

    Waiting for the bone pain to kick in

    But oh, the cost. Neulasta is the brand name of pegfilgrastim, a drug developed by Amgen and approved by the FDA in 2002. Its patent expired in 2015. You would think that would mean that competition would be driving the price down by now. And it is, a bit. But not quite like you’d think.

    Amgen made $2.3 billion off of Neulasta in 2020, making it the company’s third most lucrative drug. That’s down from peak sales of $4.7 billion in 2015. The trend is in the right direction—but it’s been six years. Why the lag?

    There are the usual reasons that drugs in the U.S. are more expensive than they are everywhere else, centered around the fact that government does not negotiate drug prices, and cost-effectiveness isn’t built into the system. A recent RAND study found that U.S. drug prices are 256% of those in 32 comparison countries. A 2018 study by the Department of Health and Human Services found that Neulasta in particular costs 3.6 times as much in the U.S. as it does internationally.

    Then there are reasons that cancer drugs, in particular, are expensive. Of course there are R&D costs, and the cost of clinical trials. But as far as I can tell, the basic answer is “because they can be.” If you’ve got a particular cancer, there aren’t a lot of competing options to choose from; no one is really negotiating prices, and people are willing to pay quite a lot (especially indirectly, via their insurance company or Medicare) when their life is at stake.

    But there is an additional reason that Neulasta, in particular, is so very expensive. Neulasta is a biologic, a complex drug produced by a living organism. Biologics have particular issues when it comes to cost. When a biologic goes off patent, you can’t create an exact duplicate of it, like you would for an ordinary drug. Instead, a “biosimilar” drug has to be developed—a comparable, but not identical, drug produced through a similar process.

    This creates several additional issues. First, copying a biologic is slower and harder than copying an ordinary drug. The regulatory process is more demanding, because you have to do a lot more to demonstrate that your biosimilar is, in fact, effectively the same as the original biologic. This extended period of testing—and the fact that the approval process for biosimilars is much newer, having been established only in 2010—opens up new avenues for existing manufacturers to file legal challenges and create other delays.

    Second, biosimilars are not generics. A pharmacy can substitute a generic unless a physician requests otherwise; this is not the case for biosimilars. And physicians are hesitant to switch to a biosimilar. Despite their extensive testing, as a category they are still relatively new, and there is not the same confidence in their substitutability.

    Third, the screwed up way we pay for drugs—with both insurers and PBMs (pharmaceutical benefit managers, like CVS Caremark or Express Scripts) as intermediaries—creates additional opportunities for biologic manufacturers to maintain their advantage. Both insurers and PBMs negotiate what they will cover, and prefer. Both rely heavily on “rebating”—negotiating manufacturer discounts in exchange for covering, or preferring, a drug—in order to reduce costs.

    A manufacturer like Amgen, most of whose profits come from a few very expensive drugs, has a strong incentive to rebate with a large insurer or PBM. So because Amgen gives rebates, United Healthcare has only approved Neulasta and will only cover biosimilars (which started to reach the market in 2019) after Neulasta has been tried—despite the fact that the list price of biosimilars is a third less. While this may be the better deal for United and its customers, it keeps the list price of Neulasta high, and stifles the nascent market for biosimilars.

    This is a really messed up system, and I suspect I could write about it at length. But for now I’ll just point out the consequences: an incredibly profitable drug that went off patent in 2015 had no market competitor till 2019, and as of early 2021 still could be billed at $15,000 a shot. Things are getting better; there are now four approved biosimilars to Neulasta, all of which cost a third less at launch, and the price of Neulasta has dropped by a third since the first biosimilar came on the market.

    But in the meanwhile, that’s another billion or so a year of pure profit for Amgen since 2015, without providing any additional value. And that’s just one drug. And that’s not even getting into how drug-centered our system is. We really could be doing better.

  • $320,301.48

    Last week I wrote about feeling gaslighted by the system. More recently I’m feeling a fresh wave of rage at the difficulty of trying to get meaningful care. A message to my PCP’s office about symptoms getting worse was returned with the helpful message, Have you considered that you might have COVID? We think you should take a COVID test. NO THIS IS NOTHING LIKE COVID AND IF ANYONE WAS PAYING ANY FUCKING ATTENTION AT ALL YOU WOULD BE AWARE OF THAT. Seriously. I was (perhaps unreasonably, but here we are) livid.

    But I’m not really in the mood to write about being livid today. Part of why I’m doing this is to try to connect my everyday experience, which is so hard to ignore right now, to something bigger than myself. So let’s talk about something that I have had the great good fortune not to deal with that is a huge part of many cancer patients’ experience: massive bills.

    This is the cost of my medical care to date. Something around $500 of the big figure is for a couple of routine pre-cancer appointments. The rest is from the thirteen months since I first found a lump.

    As you can see, my coverage is incredibly good. We spent maybe another $2000 on medical stuff not included here, but our out-of-pocket costs have been insanely low. Honestly, I feel guilty for not paying more, knowing how many people’s lives are financially ruined by cancer or other serious illness—even though I believe medical care should be socialized, and this burden should be collectively, not individually, shouldered.

    Now, keep in mind these totals are based on what providers bill, not what insurance pays. The latter figure is not nicely summed up in one place, but appears to be a pretty large fraction of the total, maybe 70-80%. If you want to break it down, perhaps $25,000 of this is from the mastectomy, $80,000 from four rounds of chemo (the cost primarily the drugs themselves), $85,000 from 20 rounds of radiation, and $55,000 from thyroid surgery. You will see that still leaves another $75,000 or so of miscellany, which includes a couple of biopsies ($15k or so), and another $12k or for the endocrine therapy that started in July. God knows what the other $48,000 is—a rounding error.

    This is all, to put it politely, nuts. If I had to actually pay this, or even to work hard to ensure that my insurance actually pays what it’s supposed to, I’d have a lot to write about. But I don’t. So I’m going to hone in on something different this week: the cost of drugs.

    I’m okay with paying a bunch of money to the insanely skilled breast surgeon, or to the nurses who whip out the big needle every month. I’m sure that part of the system is broken, too, but it feels less egregious.

    But the drugs. My god, the drugs. They are insanely expensive. A lot of this is because of maneuverings to keep them insanely expensive. And the whole system is built around creating and administering them—in the absence of providing care that involves, you know, care.

    I am going to explore, over a couple of posts, a couple of these specific drugs and why they cost so much—starting with the very expensive chemo support drug, Neulasta, and the very expensive ovarian suppression injection, Zoladex. This all gets very complicated very fast, and I don’t know how far I will get with it. But this is therapy. So I’m willing to give it a go.

  • Medical Gaslighting

    One reason I’m finding it hard to move past The Cancer Experience™ is that I am still having significant physical symptoms. Moreover, when I had (different) symptoms in the summer, they turned out to be from a specific cause (suspicious thyroid nodule) that led to surgery. So I am now hyperattuned to my body, and inclined to suspect it of betrayal.

    Yet I am also entirely aware that anxiety can have physical manifestations, and all my current symptoms are inconsistent—though persistent. This results in a constant internal dialogue about whether they are “real” or imaginary.

    One might think the answer to this dilemma is to go to the doctor. But the nurses who answer the phone, who are used to dealing with anxious cancer survivors, quickly dismiss things that do not fit into very specific boxes. Nor does my primary care provider appear to think there is anything treatable going on; her main recommendation is to give it time.

    All I know is that I have not felt well for months, that I have ongoing but unstable issues that are not obviously the aftereffects of treatment, and no answers. And an endless cycle of wondering whether I should be doing more to have them medically addressed in case they are serious, or working harder to ignore them and accept that this is life after cancer, since my medical professionals seem to think they are inconsequential.

    I have started to think of this dynamic as a form of gaslighting. Paige Sweet writes about gaslighting as “a set of attempts to create a ‘surreal’…social environment by making the other in an intimate relationship seem or feel ‘crazy.’” She argues that gaslighting involves mobilizing gender and other social inequalities to erode “victims’ sense of reality, autonomy, mobility, identity, and social supports.”

    There is no ill intent here, of course. I do not suspect my medical professionals of trying to make me think I am crazy as a form of control. Yet there is something about the situation that does indeed damage one’s sense of reality. Because I feel what I feel, but the reaction is, there’s nothing going on. So is it just me?

    There is almost certainly a gendered component to this (despite my all-female medical team), and I do think my perceptions would be taken more seriously if I were male. And, doubtless, less seriously if I were not white and professional-class.

    But there is a fundamentally structural component. Part of the reason that symptoms are dismissed is that care is fragmented and often rushed. There is no history to give the context that I am someone who rarely went to the doctor before all this. There is no time to consider that perhaps two things are happening at once, or that there is some other reason that these symptoms don’t immediately map onto expectations.

    The oncology office brackets off things that aren’t cancer; the GP’s office is unfamiliar with the side effects of cancer treatment. And the process of getting care—wait on hold for 15 minutes to leave a message, be available to take a return call at whatever time of day it happens, make it through a system of nurse triage that seems mostly designed to keep patients away from the office—all seems designed to convey the message, “don’t contact us unless it’s REALLY IMPORTANT.”

    Which, of course, leads to second-guessing oneself. Is it really important? Maybe it’s nothing. It’s persistent, but it’s not that bad. Let’s just give it some more time.

    It also leads to an incredible amount of attention to self-presentation in order to ensure one is seen as “legitimate” in seeking care. How do I convey what’s going on in a way that is strong enough to gain attention without overstating my actual experience? How do I express enough emotion to convey that symptoms are bad but not so much that they’re dismissed as the product of anxiety? If I know that certain words get attention and others do not, do I use those words, even if they don’t perfectly map onto my actual experience?

    What I wish for is a system that involved actual human attention. So that if you feel like shit, you could see the same person for every two weeks for twenty minutes and troubleshoot. A system that could take seriously the possibility of both physical and mental causes without being dismissive of either. That was interested in addressing the consequences of cancer treatment, rather than just seeing it as better than the alternative, have a nice life.

    Honestly, I don’t think I realized until writing this just how much anger I have at the medical system, despite the fact that I have had some excellent individual providers and what passes in this system for top-notch care. It is not an issue with individual providers; it is about the organization of care. And if I were in more of an intellectual mood, we could take apart the reasons, professional and organizational and economic, that it has taken the form it does.

    But mostly I’m just pissed off. I owe my life to our medical system. But it’s caused damage of its own.

  • There Is No All Clear

    In my imagination of cancer, there were more scans. I expected that being diagnosed with cancer involved being scanned, somehow, to see if it had spread. Then at the end of treatment, after the cancer had been removed and the treatments endured, the doctors would do it again and say, “Well, there’s always a chance it could come back, but as far as we can tell, there’s no more cancer.”

    It turns out that’s not how it works, at least for breast cancer.* There are no scans. There is just surgery, removal of a few lymph nodes, and treatment.

    What that means is that there’s never really an all clear. At one point, the assumption was that cancer traveled from its original site to the lymphatic system to distant organs, and so if there was no evidence of cancer in the lymph nodes, that meant that distant organs were most likely okay. However, it has long been clear that cancer can travel to distant sites through the bloodstream without necessarily affecting the lymphatic system.**

    So in my head (and in reality), the possibility existed that somewhere else in my body was more cancer—cancer in another organ, which would no longer be curable. But it was (is) an unknown. One result of this is that it never felt like there was a moment of “all clear.” There was just the end of active treatment, and hoping for the best.

    There are good reasons that scans of other systems are not part of the standard of care for breast cancer. The official ASCO recommendation is that imaging tests not be used for early (through stage II) breast cancer when there are no signs of further spread. The reason is that the chance of detectable cancer is low, false positives are common and require more procedures and anxiety, and there is no evidence that scanning extends life.

    And having had clear scans would not mean that the cancer would not return. Scans aren’t that sensitive, and you only need a few cells in the right place for the cancer to eventually do its thing.

    Yet I think I would feel better if, at the end of the surgery/chemo/radiation triumvirate, I had had scans and they found nothing visible. Even knowing that that doesn’t mean no more cancer. At a minimum, I would be less likely to interpret symptoms happening six months out as evidence of spread.

    As I am writing this out, though, I am realizing that my fantasy of reassurance from the scans I didn’t have is just that—a fantasy. The fact is that with or without scans, I am living with the risk of metastatic breast cancer. Odds are in my favor. Yet the risk is real, and it is impossible not to interpret feelings in my body through that lens.

    But we all live with an unknowable level of risk. I was living with breast cancer for years before I knew I was living with breast cancer; I also have some unknown risk of dying from a car accident, stroke, or something else entirely in the next few years. You, too, have some quantifiable yet ultimately unknowable risk of dying over that time period. The goal is to somehow live with awareness of that risk, in recognition that none of us have infinite time, without letting it become the only thing one thinks of.

    I’ll let you know when I figure it out.

    * At least in my case, and as far as I can tell more generally.

    ** Disclaimer: I am 100% not a medical professional, take my interpretations of biological processes and medicine’s understanding of them with a very large grain of salt.

  • The End of Treatment

    Sometime in June, having completed surgery, chemo, and radiation, my oncologist said to me, “Congratulations! You’re done with active treatment.” This implies things are somehow over, that you can draw an unpleasant chapter of your life to a close, and—aside from the fear of recurrence, its own topic—begin to move on.

    For people with the garden variety breast cancer that I had, however, “done with active treatment” is a bit of false labeling. The standard of care for ER/PR+ (estrogen-/progesterone-receptor positive) breast cancer patients is an additional 5-10 years of endocrine therapy to wipe out all estrogen in your body. This means a daily pill, and for patients premenopausal at the time of diagnosis, a monthly injection in the belly.

    I don’t love the injection; roughly a third of the time the nurse will comment about how they hate to give this one because the needle’s so big. But the real problem is that the daily pill has some very rough side effects.

    For people taking the drug that I was, Arimidex, the worst ones are typically bone and joint pain. The phrase you commonly see on breast cancer discussion boards is, “I suddenly feel like I’m 80 years old.” This was my main fear when I started it in July. But I was lucky enough to experience only very mild and tolerable achiness.

    In October, though, I began to feel as if a fog had come down on my brain. It was like walking through soup. I had trouble reading, or forming thoughts, or even driving. On what felt like a “good” day, I tried to put together a short summary of the book I finished writing a few months ago and couldn’t articulate what it was about. For someone whose work and identity are so tied up with their ability to think, it was shattering. And even if I attempted nothing besides puttering around the house, I still felt utterly miserable.

    It was not immediately clear that the Arimidex was the cause, but my oncologist’s office recommended a pause of a few weeks to see if the brain fog cleared up. It took weeks, but it did. A couple of weeks later, I tried the pill again and within hours the cloud had again filled my brain.

    The problem is that Arimidex and its peers reduce the risk of cancer return by about half. And my risk of return is not insignificant. There are two other drugs in the same class I can try, as well as one slightly less effective drug in a different class. All can cause cognitive problems, but some people react differently to different drugs.

    I still have options. I am hoping I do not have to choose between debilitating brain fog and doubling my risk of metastatic cancer. Nor do I look forward to risking another month of miserable, slow-to-lift fog. Research shows that people on endocrine therapy experience significantly reduced quality of life two years after diagnosis—worse than the long-term effects of chemotherapy. Something like 30% of patients who start do not finish five years of treatment, despite its benefits.

    I try to remind myself that these drugs save tens of thousands of lives each year, and that a quality of life that is reduced relative to some pre-cancer baseline may still look pretty good relative to having metastatic breast cancer. I am hopeful that a different drug will not have the same effects, or that they will take months to develop and I can reap the benefits in the meanwhile. However, I am also pretty sure that I cannot continue to take a drug that makes me feel the way I did last month, even if it is life-saving.

    There is research on the side effects of endocrine therapy, and on its larger impacts on quality of life. But in general, the world of oncology tends to minimize them, as evidenced by the fact that this all happens after the “end of treatment.” The rewards for such research are limited relative to a focus on more active interventions. This is tied not only to our pharma-centered healthcare system but to the academic preference for the scientifically exciting over the mundane-but-useful—a bias hardly limited to medical research.

    I have to be glad that these drugs exist, even if I struggle to tolerate them. But I wish the medical establishment paid as much attention to quality of life as it does to quantity.

  • Why I’m here

    Most people, when diagnosed with a serious illness, keep it to their friends and family, maybe their coworkers. A smaller number document their experience on social media, whether for catharsis, support, or to help others.

    But who writes about “after”?

    A year ago, I had just received confirmation that I did indeed have breast cancer. After a stressful few weeks of finding a lump, of an initial doctor’s appointment, ultrasound, and biopsy, I spent Thanksgiving weekend in a state of shock and disbelief that this was, in fact, happening.

    Over the last year, I have had a mastectomy, chemo, and radiation, along with removal of my thyroid for what fortunately turned out not to be thyroid cancer. I also finished a book, turned in a promotion package, and parented through a pandemic.

    Today, I am done with “active treatment.” The breast cancer is gone. Chances are it will not come back, though it could. But it does not feel over. There are physical symptoms. There are cognitive and mental symptoms. And there is a feeling of disconnect between who I was and what I cared about two years ago, and who I am today.

    For a while, I have felt drawn to writing about the experience, and about finding my way back to what I hope is a new normal. This is largely a selfish impulse. Processing the experience in front of an audience, however small, feels more psychologically productive than journaling, or joining a support group, among the other usual strategies.

    But I also hope that by writing about the experience I can reconnect to my identity as an academic, a writer, and someone who thinks about things. Illness shrinks one’s focus to the self. Taking care of one’s body, and dealing with its demands, dominates the senses. One’s past concerns—the projects one was invested in, the goals for the future—seem suddenly irrelevant.

    One’s physical self is only so interesting, however, and the experience of illness, while common, is also mundane. I hope that through writing I can move from the unpleasant particulars of my own body to the broader question of how that experience fits into the world—how at a time when I feel distressingly distant from the intellectual work that has been central to my life, I can reconnect to a larger identity.

    And finally, I hope that my writing may be of modest use to someone else. Hearing about the experiences of others going through ordinary life trials—in conversation, in memoirs, and yes, on social media—has been invaluable to me over the last year. Perhaps by doing some of my processing in public, I can perform a similar service. After all, life gets us all in the end.