To the Editor: The Reality of Formula Discontinuations

To the Editor,

I am twenty-three years old. I am medically complex; I am used to hearing unfortunate news. A medication I need is completely out of stock. A new diagnosis. A new surgery or procedure. A new doctor. A new appointment. Another test. I handle it all with grace. With patience, with understanding, with cold calculation. What are my next steps? How soon can we schedule? What do I have to do to ensure I can continue to maintain my health?

I have waited for hours on hold to speak to a doctor or pharmacist, continuing on my day with the elevator music playing in the background, notebook at the ready for whenever my call is answered. I have driven to different cities to see certain physicians, my favorite playlist playing through the car speakers as if I were just running errands. I show up to the hospital at five in the morning, on an empty stomach, a file folder with my medical history, diagnoses and medication schedule at the ready for the surgeons and anesthesiologists. They all say I’m very mature for my age. I’m well-prepared. They wish all their patients were as proactive as me. I tell them all the same thing: that my prep work makes my life easier, too.

I am twenty-three. With level-headed acceptance, I take news that might send a fifty-year-old spiraling. I can count on one hand the number of times a medical situation has made me emotional. Standing in my living room, the early-winter sun having long since gone down, on the phone with my mother, I add one more tally to the list.

“They don’t care about us,” I say, my voice rising in pitch. “They are condemning people to malnutrition, or even death. And they don’t care.”

I have been an enteral formula consumer my entire life. Though I no longer have a feeding tube, to maintain my health, I still require the extra calories and nutrients that only enteral formula can supply. I’ve just received a letter that my enteral formula is being discontinued. There are no appropriate alternatives provided. This is the second time I’ve faced this issue in a year and a half. My options are dwindling, and the panic is setting in.

My homecare company has no answers. My prescribing physician has no answers. The manufacturer listed no reason. “The following formulas are being discontinued as of December 2023. Here is an alternative formula we recommend.”

For nearly my entire life, I had been on the same enteral formula, let’s call it Formula A, manufactured by Company A. In the spring of 2022, it was discontinued. In its place, Formula B, from Company B, was recommended, so I made the switch. Now, Formula B is being discontinued. Company B recommends Formula A as a substitute. A formula that has not been manufactured for a year and a half. A part of me wants to laugh over it. How can such huge names in enteral formula as Company A and Company B not have any communication with one another? How can such enormous companies, marketing themselves on the health of their customers, make such a dire mistake? I want to laugh, but at this point, it’s no longer funny. Even I can’t make light of the situation.

I present the letter to my prescribing physician, asking for her input. She has none to give, no alternative formula recommendations. Her only advice? To visit my surgeon, three hours away, for a recommendation.

“If he can’t find a substitution for you, you might end up back on PN [IV nutrition].”

Back on PN, after five years without it. Back on PN, after my health had stabilized enough to no longer need a g-tube for enteral feeds. All because a manufacturing company decided they weren’t profiting enough off of my formula? The words send me spiraling.

“Will I die? No, definitely not,” I tell my mom over the phone. “But I’m one of the lucky ones. I’m healthy enough to survive. Will it make my life much more difficult? Absolutely. But others will die. Because we’re faceless to them. We’re a paycheck to corporations that cash millions of them every day.”

So, with this letter, I say, “Hear me. Hear us.”

We are here. We are real people. Our lives, our health is real. With these mass formula discontinuations, you are condemning us to malnutrition, to increased symptoms, to a reliance on PN that we would not otherwise need. We in the enteral feeding community already face an overwhelming amount of stress day in and day out, just trying to keep ourselves alive. We do not need the added burden of wondering where our next meal is coming from.

—Julie Andolina

We want to hear from you!

Are you experiencing formula shortages or discontinuations? If so, how are you handling it? Send your feedback, experiences and ideas to info@oley.org (subject line: Letter to the Editor).