The Chemo Shortage Has Me Thinking About How Lucky I Am

I remember heading into the hospital in January 2020 knowing that COVID-19 was a thing but didn’t feel unsafe to proceed. In fact, I appreciated that I was able to get my surgery done so quickly after diagnosis, as I presumed the pandemic was going to bring tremendous threat and danger to all of us as time went on. So, my surgery took place under pretty normal conditions. I was discharged relatively quickly, and I headed home to get ready for the next phase of my journey.

 Since my surgical team was about three hours away from where I lived, my core team and I agreed that my chemotherapy infusions would be handled locally. I selected my oncologist primarily by distance from my house, reviews from other patients and educational background. I had to wait to heal from my surgery before I started chemo, and during that time, the pandemic did indeed become daily headline news. I was already thinking about masks, disinfectants and hand sanitizers before I walked through the door.

 When I entered the oncologist’s office and infusion center for the first time, it was clear that they hadn’t been thinking about the pandemic like I was. Patients weren’t wearing masks, were directly touching doorknobs, and re-using pens to fill out form after form. I took my tour and was placed in the oncologist’s office to have our consult. My husband and I sat waiting for her to join us, which wound up being 35 minutes later than my appointment start time. This delay resulted in both my husband and I fuming by the time she arrived.

 As wecalmed down, we started talking logistics about my chemo plan. When, where, how … and then my husband asked a question that had never even occurred to me to consider: “How are we going to ensure Rachel gets her drugs if there’s a supply chain shutdown?”

 It was clear from my oncologist’s response that she hadn’t thought about that possibility either.

 She already thought we were nuts; big, bad New Yorkers who were difficult and demanding. She wasn’t wrong. When it came down to saving my life, my husband and I had no qualms asking hard questions. I made (and make) no apologies for advocating for myself (and others I’ve tended to in healthcare situations). In fact, I’ve only gotten better at it.

 She didn’t seem to think access to my drugs would ever become an issue, but she told us that she’d place my designated chemo bags in her desk drawer to ensure they were available for me during my appointments. My husband and I took her word but I’m pretty sure that never happened.

 I am incredibly grateful I never had an issue getting the drugs I needed during my four months of chemo: a potent cocktail of cisplatin andetoposide.

 If you’re not aware, at this moment there is a shortage of chemotherapy drugs, including cisplatin across the country. Manufacturing and safety issues, as well as reliance on other countries to fulfill orders is at the heart of the problem. The FDA is working on temporary fixes and doctors around the country are switching up standard regimens and rationing supplies to continue helping patients receive the care they need. There is a tremendous fear that patient outcomes will be affected.

 While a short-term solution to this shortage is imperative, a long-term solution is even more important. If we learned anything from the pandemic, it’s that we’ve got to be ready for worst-case scenarios.

 If you’re a patient right now, it’s time to advocate for yourself. For the rest of us in this community, it’s time we advocate for everyone. We need to figure out how to start producing what we need here in the US for core chemotherapy drugs with fewer dependencies. I indeed was lucky. But cancer patients shouldn’t have to count on luck as part of their program.

 Healthcare is a business and businesses are based on profits. But those of us who have faced serious health crises know all too well that healthcare is as personal as it gets.

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