Friday, March 13, 2009

Upcoming White House Forums on Health Reform

Late last year, the newly elected President and his White House transition team organized and conducted Health Care Reform Community Discussions all around the country. Some 30,000 Americans participated in this community forums and submitted their feedback and ideas to the White House. To read what was sent in from all the North Carolina discussions, see this link. If you have listened to any recent speeches from the President, you've heard him say that Health Care reform cannot wait.

So how does this apply to Celiacs or those living on the Gluten Free Diet?
  1. Celiac Disease is classified as a Chronic illness a.k.a. "Pre-Existing condition". This dirty little phrase may have already caused some of you out there headaches when trying to acquire new health insurance. Of the 30,000 Americans who participated in the discussions mentioned above, 13% stated that they had difficulty finding health insurance due to Pre-Existing Conditions - that's almost 4,000 people. Scale that out to the entire US population and you could quickly estimate that tens of millions of people are having the same problem. Those tens of millions include the estimated 3 million people with Celiac Disease. If health insurance companies were in the business of helping people and providing care rather than making money, this would not be the case.

  2. We all are too familiar with the difficulty in finding Gluten Free food, medications and personal care products. Since the Gluten Free Diet is our only "medication" and cure in order to live a healthy life, the FDA needs to significantly improve on the 2004 Food Allergen Labeling & Consumer Protection Act (FALCPA). Since FALCPA only includes wheat, a guidance on Gluten Free labeling must be solidified and enforcement must be put into place to fully ensure our "medicine" is available and safe. The Gluten Free food we do have available is on average 242% more expensive than it's non-GF counterpart. Most GF consumers spend several hundred dollars EXTRA per month on GF groceries. How many diseases out there require you to spend hundreds of dollars each month for medication? There are some I'm sure but GF foods are not covered by any insurance plan I know of while medical treatments and prescription drugs are likely covered for most other diseases. FALCPA also does not apply to personal care products nor medications (prescription or OTC) - this must be improved. It's pretty simple - why is something that is toxic to 1% of the US population not required to be labeled on items we consume?

  3. To ensure that Celiac Disease gets the proper attention, health care professionals must be adequately trained in it's diagnosis and care. Judging by the fact that estimates show nearly 3 million Americans have Celiac Disease but only about 150,000 confirmed cases exist, clearly shows our health care system is failing us. Celiac diagnosis takes on average 10 years and several doctors. People get cancer, anemia, osteoporosis, have miscarriages and develop other related auto-immune diseases before getting the correct Celiac diagnosis. Our own hospital systems attempt to poison us with their inability to serve Gluten Free meals during hospital stays. Most insurance companies do not cover consultations with Dietitians - the very folks who can help the newly diagnosed learn the Gluten Free Diet.
I could go on but these are the major points. So what is the next step? You may have already heard about the White House Regional Forums on Health Reform that are occurring in March and April. Guess what, one forum will be held in Greensboro, NC on March 31st, 2009. A web site has been created for this very topic and can be found at

I highly suggest you all use the Submit your Question or Idea button on that web site to be heard on this topic. Make sure to select the check box for the Greensboro, NC forum. I plan on sending in the points I listed above - feel free to do the same, send them the link to this blog post or add your own comments. You can also use this link to simply show your support for Health Care Reform - although this does not allow you to enter commentary on the subject.


NFCA said...

You have done an incredible job of outlining exactly why Celiac Dieses not only should but must be part of health care reform. Earlier today I placed a link on the NFCA’s facebook page that led to an article we had posted to our main site about the FDA’s recent announcement of its intention to conduct an experimental study on gluten-free food labeling . This got a lot of responses quickly. I will add a link to this blog post to that discussion. Great work!

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