Why Hatch? Why Now? FDA Gluten Free Labeling Law
Dear Celiac Sister or Brother,
I do understand your thoughts and concerns in this matter. I thought long and hard about the issues that are surrounding this case in depth. I wanted to personally respond to your concerns not only as the CEO of New Grains but as a member of the Celiac Community and as a member of the National Board of Directors of the CSA. I too personally do not like the litigious nature that this great Country has gone toward. I am a firm believer in resolving things as adults, calmly and logically reasoning out the best ways to create a win/win for all parties involved. I personally know Senator Hatch now for many years. As most people do when they are concerned about issues of State they call their Congressmen or Senators to ask for their assistance. This issues is not, “a single person’s personal desires” as the spokesman for Hatch said. To try and down play these issues by making this comment was offensive to the whole Celiac Community. This issue, as you know, affects millions of American of all ages, genders and ethnicities. After 6 months of calls, emails and messages there are very few alternatives other than legal to bring pressure to bare on the person or persons responsible for the what I believe to be the miss-use of federal tax dollars for things so far less significant than the processes, testing and ultimately the labeling of Gluten Free Products in this Country. As you probably know I have Refractory Celiac Sprue which is irreversible and now progressive. Please understand that I am not spending my time, money and effort on this issue to merely satisfy me ego and misplaced anger. It is for people like you, my children, our grandchildren and so on that I have chosen to take this cause on. My health is failing every year. At some point I will no longer be, but, I will not go quietly into the night knowing that I could have done more to protect those with Celiac’s Disease and didn’t.
It has been often said, The most egregious atrocities have been committed against mankind, because good people stood by and did nothing!” It may not seem to you or others that this issue is truly egregious in nature. However, I get call after call on my personal cell phone of parents struggling to save the lives of their children with Celiac’s Disease and desperate to find answers. Your version of the Celiac’s Disease may very well not be as sensitive as some of the others that have joined me in this cause. If this is the case then for that I am truly grateful. I know how much I suffer every day and will continue to suffer till my life is over. I know what I am facing with the MS, Early onset dementia and other things that have risen as complications of my type of Celiac’s Disease. I would never want a person especially a child to ever suffer half of what I do every day. So you see, it truly I have now ego in this fight. This is not in any way for me but for those that can’t stand and be heard. I can share with you that in the end whether or not the case is dismissed, the ripple effect will be felt and the much needed attention and soberness of this issue will be heard.
I believe that most politicians when they get started have the best of intentions and have a general altruistic myopic view of the world. After time, even good people put into positions of compromise find that they have become part of the problem that they swore to the voters they would change. I have no issues with Orrin personal. I met Orrin back in 1998 when he was running for his 2nd term for US Senate and I was running for Utah Governor. In answer to your question about why Hatch. In order to have legal standing to file a suit the issues must pass various thresholds. 1st there has to be a sincere belief that there has been a problem that rises to the level of “At Issue” as in the US Supreme will not review the constitutionality of a law unless the issues has risen to the level that they have to adjudicate it. 2nd is if you have legal standing as a person harmed in the action. 3rd is what legal jurisdiction are you in? (Criminal, State, Federal, Civil etc…) Once all that has been determined then you must determine who (you have legal affiliation with) is responsible in a very specific sense. Not just to through a very wide net and ensnare anyone and everyone that would be casually involved but the very narrowed focus of who you can asses blame. Since Orrin is my personal legislative rep of who has refused to address the issues when many opportunities were given is the one that meets that narrowed criteria. Many people including the Utah Attorney General have asked me the same questions, Why Orrin? My answer is the same now as before. He was brought into this issue because of his own personal refusal to address or respond to these issues. The CSA Exe. Chairman actually was in DC earlier this year. I asked Mary to take time out of her busy schedule to stop by Senator Hatch’s office to discuss some of the issues concerning to the Celiac Community. She did as I asked and when she got there she was turned away. I told the Hatches staff that Mary Schluckebier is the Exe. Dir. Of the Largest Celiac Support Group in the US but I can only surmise that my efforts were in vain.
As you can see I have done so much more in preparation to this issue than just go file a lawsuit. Every effort has been made to assist the Senators and his staff in being educated on the issues at hand. The FDA is soon to release the rule allowing things to be Certified as Gluten Free when they truly are not. This means that people will get sick and may even die. That is a problem that I refuse to be part of. On the moral Mandate issues for the FDA They are to protect the citizens of this country from harm. Allowing gluten to be present in a Gluten Free Labeled product is in direct violation of that mandate. By the FDA’s own reports; 1% of the Celiac Community will have an autoimmune response at .02ppm. the FDA is being forced to adopt a standard of 20ppm which based on simple linear math means that 100% of all of the Celiac community will have an Autoimmune Response. Put into simple language is pain, suffering and death! These are not complicated issues to understand or verify.