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.
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.
