I have many, many thoughts about the practice of pharmacy. Given my background in pharmacy, my experiences as a patient are really frustrating and thought-provoking for me. I could really drone on and on haphazardly about this subject. I feel I should spare people a long, drawn-out discourse, but I do have a lot to say, so I’m going to try to divide this subject into three parts, the first being general background about my career and the current state of my medication regimen, the second being my experiences as a pharmacist and patient, and the third being ideas for where the profession of pharmacy and drug development needs to go. I apologize if this gets a little detailed and long, especially for those people that are not 1) pharmacists, 2) patients with experience getting medications, or 3) interested in my personal frustrations.
First, some background information about me. I have practiced pharmacy for twelve years. While I have experience in retail pharmacy as a technician, intern, and pharmacist, most of my experience has been as a nuclear pharmacist. I make radioactive drugs that are used primarily in medical imaging. I have two side notes regarding nuclear pharmacy before I move on. I don’t usually address this because I feel like people generally have their preconceived notions and my words won’t change anything, but my occupational exposure to radiation definitely did not cause my cancer. In my 11 ½ years working with radiation, I have received far less exposure than I just received in the past 6 months with CT scans, like multitudes less. I have been able to work through two pregnancies with minimal job restrictions and this says a lot because the radiation limits for a fetus are extremely low. Second, just an interesting side note, I have received and will continue to receive some of the nuclear medicine products that are produced in nuclear pharmacies to help image cancer, so I guess my career is finally coming full circle.
This is embarrassing to admit, but I didn’t do any research about my current drug regimen. There are many reasons for this which I won’t get into. I checked a few things off my list mentally, then decided I was comfortable with the regimen. Here is a quick summary of my drug regimen: since my type of cancer is fueled by estrogen, I’m on a few medications to stop the production of estrogen from my ovaries (so I am menopausal…estrogen-free) and block the effects of estrogen in my body. I’m also on a drug used for osteoporosis to help strengthen my bones. Finally, I’m on a newer medication that blocks cell division through a pathway that was found to be up-regulated, or more prevalent, in my type of cancer cells.
Everything made sense to me, both biochemically and from a quick search on breastcancer.org (this is my go-to website that I use to get a quick overview of what the current recommendations are and what other people are doing), so I moved on and didn’t really put any more thought into my regimen. A few things have happened recently that have struck a negative cord in me about one of the drugs. Full disclaimer, I’m writing this from the emotional standpoint of a patient. This is not a professional research article. If you or someone you know is taking this drug, please do not take this information as a reason to discontinue. The drug is palbociclib, or Ibrance® and was approved by the FDA in 2015 for estrogen-receptor positive, metastatic breast cancer, like mine. I could tell from the start that this was a special drug. I had to get it from my super-annoying specialty pharmacy (this will be touched on in my next post).
The company that makes Ibrance®, Pfizer, sent me “care packages” on 2 separate occasions (the picture shown here…same exact package, sent to me twice), so they seem to be heavily invested in marketing this drug. In addition to all of the people at my oncologist’s office and the pharmacy I have talked to about this drug, Pfizer had yet another person reach out to me wanting to discuss this drug with me. So, I was already getting slightly annoyed by all of the fanfare associated with this drug, when I became the victim of…I don’t know what…a conglomeration of miscommunications within the office of my oncologist that has resulted in lots of my time wasted getting lab work done and discussing lab results. One major side effect of Ibrance® is decreased white blood cell counts and decreased ability to fight infection. My oncologist’s office seems to have no idea what the recommended protocol is for drawing labs to monitor these white cell counts. The frustrating part is that there is indeed, a protocol, because different people within the office have referenced this protocol, they just all seem to be looking at slightly different information, because between the oncologist, the nurse practitioner, the nurse, and the pharmacist, I have gotten different directions of when to get my labs drawn. This has resulted in several situations where labs were drawn unnecessarily or I went to get labs drawn, only to find out there was no order for the labs. I feel like this is a situation where my oncologist could have just said, “Okay, I know you passed third grade and are competent enough to raise children. Why don’t I just give you the information up front…get your lab work done at day 15 and day 27 of the 28-day cycle for the first 2 cycles. I’ll just put in a standing order for these labs and you figure it out.” But, honestly as much as I like my oncologist and healthcare team, I’ve seen them stumble around on their computers enough trying to put a simple lab order or prescription in, that I understand why this didn’t happen. Also, I think part of the confusion is due to this simply being a relatively new drug and everyone is still trying to get used to it.
In the big picture of things, this is not really a big deal, just annoying; however, in the midst of all of this chaos I noticed an advertisement for Ibrance® (again, really embarrassing that I’ve resorted to getting my drug information from advertisements). The advertisement clearly said “does not increase overall survival”. My reaction was immediate and dramatic. I have a terminal illness…I’m not taking this drug to feel better, I want to live longer. Isn’t that the point of my treatments? You’re telling me that I would live the same amount of time whether or not I’m on this drug? Aahhh! I was so frustrated! So, I decided it was time to do a little research. Basically, in my 10-minute Google search, I discovered that while Ibrance® does significantly increase progression-free survival, relatively new data failed to show a difference in overall survival…. the numbers for overall survival were 34 months without Ibrance® versus 37 months with Ibrance®, which was not statistically significant. I also discovered in my search that this drug is listed at $10,000/month. Yikes! So, let’s say I live the average 37 months while taking this drug…that’s $370,000 to live an extra 3 months (and that’s not even a statistically significant number…you can’t even quote that 3 months with any confidence). I have young kids that I want to see grow up as much as possible. Every minute counts. But, I would honestly never pay that amount to live an extra three months.
As a pharmacist and as a cancer patient, I’m all for new drugs and drug research. That being said, I feel as a society with ever-increasing health care costs, we need to take a step back and evaluate what we’re doing. I’m extremely frustrated by all of this…the “care packages” Pfizer sends as marketing; all of the personnel I have to talk to about this drug, none of whom are of any practical assistance to me; the fact that no one seems to question the cost of the medication or even bring it up to me as a patient (with insurance and discount programs, I don’t pay a dime for this); and mostly the fact that it appears my life expectancy is a short 37 months, based on my quick glimpse of the clinical trial results. This concept of throwing all of this money at end-of-life measures to maybe increase your life by a few months is the exact opposite of everything I think we should be doing in healthcare. The only potential positives of this for society that I can think of are 1) maybe this is a stepping stone to a really improved therapy that will extend lives dramatically and 2) maybe this is necessary step that needs to occur before a cheaper, more streamlined production method is developed to make this drug cheaper and more accessible. The only potential positive I can think of for myself, personally, is that maybe my cancer cells are particularly sensitive to Ibrance® and possibly I would be on the far right side of the bell curve in terms of survival benefit. It seems like we’re grasping at straws. I don’t want to sound like I’m just giving up the fight, but I’m really on the fence about continuing on this medication. From the data at hand, it seems like Ibrance® is a drug without any proven survival benefit that is being oversold to a desperate population. I realize this might be a harsh overreaction, I’m guessing a more definitive survival benefit may become apparent as more people die (morbid I know, but that’s how you’re going to get to statistical significance). I think the point is that this is a costly drug that is not without side effects and the need to continue warrants a discussion with my oncologist
One thought on “Pharmacy Life, Part 1”
Thank you for your honest words. I don’t know you but I do feel for you, & wish you the most comfort possible in your journey. My mother passed this year from ALS, she was diagnosed in 2017 and given 2-5 yrs to live, but she would progressively lose motor skills. As you probably know their is no cure. A new drug had been developed in Japan called Radicava, it was not a cure, but MAY extend your life for a number of months. It was not as expensive as $10,000/month, but the money was an issue. It didn’t seem worth it to her (even after my brother, sister and I said we would pay for it). She explained in a letter to us that it was not about money as much as it was about her choice not to have a few extra months of deterioration of health and no quality of life. This was a little hard to understand at first because I think selfishly and probably understandably, I wanted every day I could with her. The truth was that I did not know what she was going through in her mind. In the end she did not give up either, but she went out on her own terms. In the processes, she taught our family about courage (which she had all her life) but now she was teaching us courage in death. As you said it may sound morbid, but death is a part of our lives. While I did come to accept, learn and understand her process, your words helped me to understand and learn a little more. THANK YOU! Enjoy everyday as much as possible! Stay Strong and God Bless!
With Love and Understanding,