A few weeks ago I shared my thoughts on the formula shortage based on the information I had at the time. Exactly one week later, to the day, the news broke of a whistleblower at Abbott contacting the FDA about his concerns clear back in September 2021. Connecticut representative Rosa DeLauro disclosed this report during a budget hearing last week and raised questions about the lack of response by the FDA.
In my essay published here on nelbell.com on April 21, 2022. I stated, “And the responsibility of the shortage/supply doesn’t necessarily rest on any one person’s or group of people’s shoulders. It just SUCKS! It’s part of living with rare diseases while the rest of the world lives on in oblivion.” Within an instant of learning about DeLauro’s disclosure, everything in my world flipped on its head: Learning that someone IS responsible for this shortage and, consequently my son’s current nutritional concerns, changed almost everything except one thing: The rest of the world continued to live on in oblivion. Granted, there are a lot of major US and world events deserving our attention right now, but there has been virtually no attention given to this and it’s a disgrace. The only solace I could conjure up outside of my rage last week was that maybe now there could be some resolution to this nightmare. After I read the article by Helena Bottemiller Evich of Politico, I thought, “Oh, man! The shit’s really gonna hit the fan now!” Nope. Not really. Nothing. NPR ran a pretty good piece on May 1, but it wasn’t investigative in nature and didn’t explore any possible resolutions since that was not the focus of the piece. Still, it contained critical information (although maybe not realistic for parents with NO safe options).
I wrote my state representatives and senators that day. I received nothing but a canned response back from a couple of them. I doubt they will ever even see my words. I watched the news for days. There was hardly any coverage of the whistleblower report at all. Evich’s own story was buried in the agricultural section of Politico.
As a parent of a child living with special needs, I don’t know that I’ve ever felt so betrayed or neglected. My son relies on elemental formula daily for supplementary nutrition. It makes me so sad for him and others like him and those struggling through even more severe circumstances than he is. I don’t think there are words to adequately describe the pain and frustration these families feel. I’ve never felt so helpless.
Very few people seem to grasp the gravity of this situation. I can’t understand how this can just be swept under the rug and so grossly ignored, regardless of how many other serious issues there are. News outlets have certainly found plenty of space for the Met Gala. I simply cannot comprehend this.