IBD | Information
Recently, I’ve seen a lot of discourse about Humira biosimilars, especially since CVS announced they would no longer cover Humira and would only offer biosimilars. But the Humira biosimilars officially hit the market back in January 2023, and my insurance company switched everyone in their health system to a Humira biosimilar shortly after that. Given that I’ve been living the Humira biosimilar life a bit longer than most in the US at this point, I thought it might be helpful to share my perspective.
The purpose of this blog is mainly to share my experience, not to provide an in-depth explanation of the science behind biosimilars, so please visit the links provided by our editor at the end of this blog if you’re looking for a deep dive into biosimilars.
When I first learned about biosimilars, looking at the science behind them helped me feel more assured. That said, I still felt a great deal of fear and anger about the fact that I would have to switch. Those who know me or who have read my past blogs know that my Crohn’s journey has been far from straightforward. I had an anaphylactic shock and serum sickness reaction to infliximab that made me terrified of Crohn’s medications. I was so traumatized from what happened that I swore off biologics for a time, which landed me on high-dose steroids. I ended up getting drug-induced adrenal insufficiency from the steroids, an unlikely but serious complication that can occur from corticosteroid usage. My endocrinologist told me that my adrenal glands may never recover, and I may be dependent on steroid replacement therapy for life. Luckily, my adrenal glands did recover after nearly a year, and, in the midst of all this, I started Humira.
Image of a box with a wood background labeled Humira.
Initially, I was very afraid of Humira. I was terrified of getting anaphylaxis again, and terrified of the serum sickness. At this point, I was now terrified of steroids. And terrified of what would happen to me if my body never tolerated any of the Crohn’s medications. I have had a lifelong struggle with Obsessive compulsive disorder (OCD), and my OCD magnified my very reasonable fears to the point of extreme panic and hopelessness. I actually almost stopped the Humira within a few weeks of starting it because I was just so afraid.
I’m so glad that I didn’t, because Humira turned out to be really good for me. My Crohn’s went into deep remission. I did have side effects from the Humira, but nothing compared to what I had experienced in the past, and nothing compared to the agony of active Crohn’s. Fast forward three years, and I was no longer afraid of Humira, but instead was terrified of the Humira biosimilar that my insurance company had written me a letter about. Humira had stabilized me at a time when I was in dire need of some stability, and I was absolutely terrified of doing anything differently.
At the same time, I knew the switch to a biosimilar was inevitable. My insurance company had already announced the switch, and I knew I was unlikely to win a fight against them. Trying to appeal the biosimilar switch would have taken months, and would have delayed my injections. Also, I have many complex health needs, and all of my providers were under my insurance company. Changing to a different insurer would have meant giving up my excellent GI and PCP, along with my neurologist, endocrinologist, case manager, physical therapist, dietician, and more. It really wasn’t even an option. So, I set out to practice radical acceptance (a DBT skill learned in therapy), and figure out how to prepare myself for the switch to the biosimilar.
The first step I took to prepare was watching a video by the Crohn’s and Colitis Foundation, in which gastroenterologist, Dr. Christina Ha, explained the science behind biosimilars. For me, the most helpful thing she said came about 36 minutes in, when she explained that the medication patients were getting, the medication that was working for them, was working because of the mechanism of action, not the brand name. So, if Humira was working for a patient, it was because of the mechanism of action of the adalimumab. She went on to explain how adalimumab makes up all of the biosimilars, and the reference product (Humira). She talked about how patients should shift their mindset, to stop referring to their medication as Humira and instead think of it as adalimumab.
That really resonated with me. I went into my electronic calendar, and changed my recurring biweekly event named “Humira Injection” to “Adalimumab Injection.” I made this change a year before the biosimilars even hit the market, just to slowly switch my mindset.
Of course, I also discussed biosimilars with my GI. She told me that, when biosimilars first came out, she fought against them to keep all of her patients on the reference products. But, after she saw the data on biosimilars showing how safe it was to switch, she realized that it was safe for patients to be put on biosimilars. I have a lot of trust in my GI, and we have a shared appreciation for data. I know that she has meticulously poured over all the data from my case–lab results, pathology reports, and more. We make decisions based on data, and that really helps me feel good about the decisions we are making. Hearing her say that she reviewed biosimilar data gave me confidence that it was safe to proceed with a biosimilar.
Even with all of the science, I was still terrified to make the switch. I am what you would call a “clinical outlier” patient. I get the rare side effects. My body often acts in ways that defy logic. What if the biosimilar didn’t work as well? What if I had new and unbearable side effects? My brain loves to cook up endless questions like this, and it has a lot of traumatic medical experiences to fuel it.
Ultimately, though, there was really nothing I could do. I could not make the fear go away, even with all the data in the world, and so I just had to accept the fear and switch to the biosimilar anyway. After a year of worrying about it, the switch went fairly well. I did panic quite a bit for the first several weeks that I was on the biosimilar. But, as time went on, my confidence grew, and I did what I always do when I panic about my Crohn’s: checked the data. It’s been about ten months now since the switch. My calprotectin has been stable, except for a brief escalation due to infection. My last colonoscopy looked good, and my adalimumab trough levels are stable as well.
Even still, I continue to worry. What if the Crohn’s comes back next week, next month, next year? What if the stability goes away? What if the adalimumab stops working? Unfortunately, this is part of the reality of life with Crohn’s. That fear will always be with me, because the disease coming out of remission is always a possibility. All that I can do is follow the science, the advice of my trusted GI, and the data that my body generates. That’s all I can ever do, and ten months later, all signs point to the biosimilar doing its job.
Overall, I am grateful to see biosimilars coming on the market. I hope that they expand access to biologics. Someone I care about was recently diagnosed with Crohn’s, and I am glad to know that that person can just start out on a Humira biosimilar. I like the fact that the biosimilar now in my fridge costs less than my first car, unlike the Humira I was on for years. I also appreciate that biosimilars create competition, and competition drives innovation–AbbVie lost its monopoly over adalimumab in the US, and so had financial incentive to create new treatments (for example, Rinvoq), which creates more options for patients. As someone who has had serious adverse reactions to several medications, I feel relief seeing more and more drug options come on the market.
Still, I do question the ethics of forcing patients to switch from the reference product to the biosimilar. Many of us have been traumatized by IBD, and forcing someone to switch from the drug that makes them feel safe in their body to a biosimilar can be psychologically grueling, even if there are no negative effects on physical health. I wish that insurance companies would consider this.
But, alas, that is not the world we live in. So, for me, the best choice was to accept the biosimilar, educate myself, and make a plan to cope with the psychological challenges brought on by the switch. I am glad to be on the other side now, and hope to be on my biosimilar for even more years than I was on Humira. And, if that’s not the case and I need to change to a different biologic, I hope to start out on a biosimilar rather than having to go through a switch (Stelara biosimilars are coming in January 2025).
Biosimilars are the way of the future (and have already been in use in Europe for years), and I hope that we as a larger IBD community have conversations not only about the science behind them, but also about how to support patients mentally, emotionally, and physically if they are required to make a switch.
Note from the Editor:
Girls With Guts does not offer medical advice or recommendations about specific medications. Rather, we empower women with IBD and/or ostomies through the building of community, sharing experiences and by providing information about living with IBD and/or ostomies that can inform conversations you may have with a physician. The following links are a starting place to learn more about biosimilars:
