Yesterday I found myself close to tears as I was helping my family write to their local congress representatives regarding the “Gluten in Medication Disclosure Act”. I have always said that finding safe medication is one of the hardest parts of having Celiac Disease. I try not to take medication if I can help it, so when I fill a prescription – it is for something pretty important and time sensitive. Going to the pharmacy has become an enormous process. I may spend hours on the phone trying to find out what brands/manufacturers are gluten free. I once spent weeks – seriously weeks – petitioning my insurance company to cover a specific brand of medication that I knew to be gluten free because they couldn’t tell me if the generic brands that they covered had gluten in it.
And then there’s the issue that came up the past two times that I went to the emergency room. Let’s look at my kidney stone visit:
- The doctor releases me shortly after 5:30pm.
- I go to the pharmacy.
- The pharmacists don’t know if the medication is gluten free.
- They call the manufacturer, but they are closed for the day.
- We call my doctor at the emergency room.
- The solution – don’t take the medication. If the pain becomes worse or I start passing more stones, go back to the ER that night.
Great. Seriously it makes me want to cry, it is so difficult.
BUT there is a new proposal for a bill that will require drug manufacturers to label the presence of gluten in their medications. This could be one of the most important pieces of legislation that the gluten free community sees in this century – if it even happens. At the moment it is estimated that the bill has a 0% chance of getting passed. This makes me want to cry again. Even though millions of Americans are affected by gluten, there is not enough importance being placed on this bill.
Which is why many gluten free bloggers are encouraging their followers, family, and friends to write letters to their local representatives. Much of the information I got for this post came from Gluten Dude (thanks, Dude!). He also offered a great, simple letter that you can copy/paste directly in your email to your congressman/woman:
“Millions of your fellow Americans have a medical necessity to be 100% gluten-free. It’s not a fad and it’s not a joke. There are currently no labeling laws in place to determine whether medications are gluten-free or not, putting people at serious risk. The pharmacies usually do not know, and even a call to the manufacturer may not get the right answer. I am asking you to please support the Gluten in Medicine Disclosure Act (HR 3648) introduced by Representatives Tim Ryan and Nita Lowey. Thank you in advance for your consideration.”
So seriously, this entire process takes about five minutes. We must make our voices heard. We are talking about our lives and well-being. We must make a difference.
Find your local representatives here:
My letter to my congressman:
“Dear Congressman Crowley,
Millions of your fellow Americans have a medical necessity to be 100% gluten-free. It’s not a fad and it’s not a joke. There are currently no labeling laws in place to determine whether medications are gluten-free or not, putting people at serious risk. The pharmacies usually do not know, and even a call to the manufacturer may not get the right answer.
I, myself, have had several health scares that prompted emergency room visits and necessary prescriptions. The pharmacy and manufacturers did not have the proper allergen information and I was presented with two health-threatening options: 1. Take the questionable medication and risk an autoimmune reaction and complications even worse than my original concern. 2. Do not take the medication and risk another emergency room visit a few hours later. My choice was the later. In some circumstances (if I had the physical stamina to do so and my hospital/pharmacy visit was between the hours of 9:00-5:00) I would call various manufacturers myself in search of a safe brand. However, even if I did find a manufacturer that claimed their medications were gluten free, my insurance would not cover that brand, and I would be asked to pay hundreds of dollars out-of-pocket for one pill. These are agonizing situations that millions of Americans are forced to face, but they can be completely avoided if a law were in place that forced manufacturers to clearly label the presence of gluten in medications.
I am asking you to please support the Gluten in Medicine Disclosure Act (HR 3648) introduced by Representatives Tim Ryan and Nita Lowey. Thank you in advance for your consideration.
Signed a concerned citizen who needs your help”