- Hannah Dolins has maple syrup urine disease and needs a metabolic formula to live.
- Without her formula, she can fall into a coma and die.
- This is her story, as told to Heather Marcoux.
This as-told-to essay is based on a conversation with Hannah Dolins. It has been edited for length and clarity.
The last three months have been some of the most stressful of my life — because from the moment I heard about the Abbott formula recall, I was terrified.
I'm 28 years old. I am not ready to die. But without my specialized metabolic formula, Ketonex-2, I may die. I need my formula to live.
I have a rare genetic disease called maple syrup urine disease, or MSUD. Only about 2,000 people in the US live with this. I cannot metabolize protein, and trying to do it can kill me. My formula is a combination of all the broken-down amino acids, minerals, and vitamins my body needs.
I'm running out of formula
I need three cases of Ketonex-2 formula per month, which costs about $1,200 a month if you're paying out of pocket — and trust me, the insurance companies often find ways to make sure it's not covered. Each case includes six 400-gram cans. I need to consume more than half a can a day.
I have not received a case in three months.
I have COVID-19. I need my formula to fight it. My supply is dwindling every day, and I am scared.
The formula shortage may kill me, and I want everyone in this country to understand that. What happened at Abbott and how it is being handled could end my life.
I know too many families right now who have completely run out of formula. This is a disaster for us.
I want more information from the FDA
The FDA has not been transparent with us through this process. I understand why the FDA needed to shut down Abbott's formula production to make sure it was safe. But what I don't understand is why the FDA did not give people like me more information about what was going on with our sole source of nutrition.
I want the country to know that when I run out of Ketonex-2, hospitalization will be the only way to keep me alive, but it's a short-term solution that probably won't save my life. In the hospital, I'll be given an IV of D10 dextrose to keep my calorie intake up, but that won't give me any protein. For that, I would need my formula — but the hospitals, too, are running out of it.
Within 24 to 48 hours without my formula, my brain will start swelling and deteriorating. I will fall into a coma and likely die.
I don't want to die yet. I don't want my friends with MSUD to die, and I am so worried about them. There are thousands of people who need this formula to live. And Abbott was one of the only companies in the United States making our source of nutrition. We are being treated as an afterthought in the formula shortage.
I wish people were talking about the metabolic-formula shortage as much as they're talking about the baby-formula shortage, because we need help too. There's been more media coverage of the baby-formula shortages than the metabolic shortages, and we've been yelling and screaming for months, trying to get someone to listen to us.
We need the government to pass the Medical Nutrition Equity Act to ensure insurance coverage of medically necessary food, vitamins, and amino acids for metabolic disorders. We need help now.