What I Don’t Know Can Kill Me

The FDA’s new rule threatens people with allergies.

I want people to be aware of two things. First, no one decides to have life-threatening food allergies. People do not decide it is a good idea to put their lives at risk every single day. Second, life-threatening food allergies are a disability, in theory, and people with food allergies should have the same level of protection under the law as any other disabled person.

The FDA made the announcement on the Friday before Memorial Day weekend 2020. The new policy allows manufacturers to omit and substitute ingredients. They can do this without updating food ingredient labels on the products. The FDA had no period of public comment. They gave no one the chance to fight for our right to eat without fear and without the risk of death.

In the sea of current events, maybe this ruling doesn’t appear important. At least, the media’s complete and utter lack of attention on the issue would suggest that. The problem is food allergies don’t care about pandemics. Food allergies don’t care if you are rich or poor and they don’t care about your ethnic background. Food allergies put a bigger burden on the poor than the rich. They impact people more when they are in a food desert. Food allergies put people in medical debt and food allergies kill people. Food allergies are a social issue. They must be addressed even when other things are going on.

Pie Chart with fear, pain, debt, and death as the options with no numbers.
What we don’t know has great potential to hurt us. I am scared my food can hurt me. I am worried about medical debt. I am worried about the pain, and I am worried I will die.

Although the FDA claims say that food allergens won’t be affected, their example is of things known to cause anaphylaxis (a life-threatening reaction to an allergen). In their example, they talked about substituting rice flour and sunflower oil. Both rice and sunflower oil are known to cause life-threatening reactions in people with allergies to them.

I have a rare allergy, as do many other Americans. The substitution of unlisted “similar” ingredients could kill me or someone like me. More than 160 foods are known to cause life-threatening anaphylaxis. Of those, only 8 of those allergens get specific protection under US federal law. That leaves thousands of Americans unprotected.

It is already extremely difficult to protect myself because of vague and deceptive labels like “natural flavors”, “spices”, “vegetables”, and “starch”. Those ‘ingredients’ violate my right to life, liberty, and the pursuit of happiness. These vague ingredients cost me time and money because I have to find products that have transparent labels. They tax my relationships, as restaurant food is often dangerous to my wellbeing, and we belong to a culture that revolves around food. Additionally, these vague labels have sent me into anaphylaxis — almost costing me my life — and I am not alone. Millions of Americans have rare allergies because rare allergies are not that rare.

The FDA is putting our lives at risk during a pandemic that is already risky enough. And I can’t help but wonder how the FDA expects me to protect myself when I don’t know what I’m protecting myself from. Making every single food from base ingredients isn’t feasible or even possible for everyone. What do we do when reading the fine print is not even enough? Do we opt to starve to death out of fear instead? How about people who already are food insecure? How are they to protect themselves?

This law threatens the well being of disabled individuals. These individuals didn’t do anything to deserve this. That should attract the media’s attention. But it doesn’t.

The FDA made an announcement stating they’re already considering making this permanent. Imagine the lives that will be lost. Imagine the money that will be spent on preventable medical bills. Think about the pain induced due to a neglectful policy written by the very organization that is supposed to protect us.

This FDA policy threatens my life and the lives and wellbeing of millions of Americans. But, maybe, if enough people know and care about this dangerous policy, it can be stopped. All I need is enough people to care. But that is the problem, in the sea of other events, things like this get lost. And because the media hasn’t covered it, the FDA is allowed to threaten disabled people’s lives and well being with little objection.

There are a few things people can do to help. They can spread the word. They can write the FDA, and they can sign a petition.

FDA link: https://beta.regulations.gov/document/FDA-2020-D-1139-0009

Petition link: https://www.change.org/p/food-and-drug-administration-don-t-let-manufacturers-lie-on-ingredient-lists




I write on things I find important.

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Celeste W.

Celeste W.

I write on things I find important.

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