When I first started this blog, my only goal was to create a safe space to share my story. I didn’t have any other ambitions other than the hope of reaching others within the IBD community.
I never thought I’d be one to bear my soul on an open platform like a blog. It wasn’t until I went down the Instagram rabbit hole one day on my personal page when I stumbled upon a girl named Sam in Chicago. She was about my age and openly discussed her chronic illness in an effortlessly humorous way that almost made having a pooping disease seem a little less embarrassing. I’d never seen someone talk about their disease so candidly, and if we’re being honest, she was the reason I felt comfortable sharing my story.
Flash forward a year, and Sam posted a request to speak with patients taking Humira through her Instagram. Not knowing what it was about, I sent her a message to learn more. Humira gave me my life back after all, and I’m a huge advocate for this miracle drug. Instagram messages turned into emails and emails turned into a phone call (which, as a millennial, I hate talking on the phone so you know this is a big deal if I willingly agree to speak to a complete stranger), and the phone call turned into… well, I’ll get to that in a minute.
Sam from Chicago and is now Sam from Washington D.C., and Sam from Washington D.C. is now working with an organization called Patients For Affordable Drugs. Why should you care? Because if you have Crohn’s Disease or Ulcerative Colitis, you know the list of medications available to manage your condition is very, very small. Once you find one that works, it is imperative that you stay on it as long as possible because if you stop treatment, your body may build antibodies preventing it from working then next time you need it.
But with the rising costs of drug prices, and the lack of biosimilars (a.k.a. “generics”) for these specialty medications, some patients simply don’t have a choice but to stop their treatment because they cannot afford it. When my family switched insurance plans from a group rate from my employer to an individual insurance plan, my co-pay for Humira went from $30 to $250 PER MONTH. As an individual, you cannot negotiate lower drug costs like employers can with group rates, and when a generic isn’t available, your hands are tied.
It’s bad enough that we are facing a chronic illness that, if not managed, could take our lives. But then to be faced with knowing that there is a more affordable treatment option but it’s not available to us simply because of a “deal” between companies? Now that’s heartbreaking. If you aren’t mad about that, you damn well should be.
Patients don’t have the same leverage as a consumer. We can’t decide, “I’m not going to buy this drug” or “I’m going to shop around to find it cheaper/wait for it to go on sale.” We can’t simply wait for the pain to pass like a muscle sprain or headache. We are at the mercy of pharmaceutical companies. So what happens when these pharmaceutical companies take advantage of the situation and block competition/generic versions? That’s where Sam and Patients for Affordable Drugs come in.
Now let me begin by stating that I am eternally grateful for Humira and AbbVie for this wonder drug. I’m not naive to the fact that medications are astronomically expensive to develop and in order to continue developing lifesaving drugs, pharmaceutical companies need to fund research, trials, etc. This is why patents are in place so pharm companies can maintain a monopoly for a set period of time. However, to protect its monopoly BEYOND the patent (which expired in 2016), AbbVie is engaging in a practice called “pay-for-delay” that keeps cheaper biosimilars (generics) off the market for another five years. In case you missed it, you can read about this deal here.
Patients for Affordable Drugs is trying to bring attention to this practice. While the FTC is investigating, patients from across the country are sharing their story and Sam asked me to share mine! How could I refuse?
And if you don’t know Sam, follow her @sammmreid or check out her blog http://www.sickerthanyouraverage.com. Thank you, Sam, for being a voice for the silent and an inspiration for the hopeless.