This Week On The Hill: Celiac Disease and Politics

4 Mar




U.S.-Capitol

When I moved to Washington DC to teach 7th grade Science I never thought that I would end up in the offices of Senators and members of the House promoting legislation that will benefit the gluten free community. Advocating for the gluten free community is one of my greatest passions, it is why I started this blog, go to events and volunteer for many of the gluten free and/or Celiac nonprofits in the United States, but I never thought I would have the ear of the US government.

The Digestive Disease National Coalition held its annual public forum, uniting people from across the digestive disease spectrum for one cause: get our needs on Congress’s radar. DDNC held multiple informational lectures on Sunday preparing the volunteer advocates for our day on the Hill. Sunday night ended in an amazing Welcome Reception. I never expected to worry about over eating at a Digestive Disease event but the food was incredible and 100% gluten free despite the fact that Celiac Disease is only a small subset of the overall coalition. Katz provided the gluten free desserts as well as toast and muffins for breakfast the next day.

The Digestive Disease National Coalition unites people advocating for the treatment and prevention of conditions ranging from colorectal cancer to pancreatisis to gastro paresis to Celiac Disease to Chrons and much much more. The showing of volunteers was truly inspiring because we had policy makers, presidents of nonprofit organizations, patients and the families of patients all working together to promote legislation that will help cure, treat and prevent digestive diseases. I met cancer survivors who showed up to support people still fighting for their lives. I worked with people who were physically exhausted by the end of the day because they are living with serious chronic illnesses. The solidarity demonstrated by the digestive disease community is something to be revered.

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Although I am from California, I was representing the state of Maryland today, my current residence. I was happy to be with Team Maryland because Marilyn Geller, Chief Operating Officer of the Celiac Disease Foundation, was here representing the political needs of Californians living with Celiac Disease. Alice Bast, president of National Foundation for Celiac Awareness, was here representing Pennsylvania along with a small cohort of other members of NFCA. I was very proud to be a part of the Celiac cohort present at DDNC.

DDNC divided our coalition by state, forming teams of around six people. The teams were responsible for planning what would be pushed for during our meetings with Senators and Representatives and had to elect a team leader to facilitate the discussions. I was elected leader for Team Maryland which was both humbling, terrifying and exhilarating.

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I met with the offices of Senator Mikulsi, Senator Cardin, Representative Ruppersberger and Representative Van Hollen. The main goal of our visit was to push for an increase in National Institute of Health funding from $31 billion to $32 billion. Honestly, it was an easy sell given the fact that the people I met with were democrats, on various health committees and the NIH is located in Maryland so its funding directly impacts the state by increasing jobs in the health field.

You may be wondering what can Congress do for someone living with Celiac Disease. That is a fair question, unlike many diseases and conditions out there, Celiacs doesn’t have a very long or involved legislative agenda, something the gluten free community hopes to change in the next few years. However, there are a few issues that are pretty significant: 1. Gluten Free Labeling Laws 2. National Celiac Awareness Month (May)

Currently, the gluten free labeling bill is being reviewed in the Office of Management and Budget which is great. It should get sent back to the FDA soon for approval. The main issue I focused on in my Congressional visits was the declaration of May as Celiac Awareness Month.

In a time when budgets are tight and sequestration has broken the hearts of many members of Congress, pushing for meaningful legislation that doesn’t cost Congress a dime is pretty heart warming business. There is no reason for Congress not to proclaim May as National Celiac Awareness Month; however, there is a risk that this issue gets overlooked given the complicated political climate. My goal was to get this House and Senate Resolution on their radar.

I explained to the members of Congress that Celiac Awareness Month is incredibly important to our community. For one thing, the biggest challenge with living gluten free is the overall lack of awareness in the general population about the condition. Celiac Awareness Month helps get the word out because not only does the government get involved but it gives nonprofits like Celiac Disease Foundation, National Foundation for Celiac Awareness and the Gluten Intolerance Group a wonderful platform for awareness campaigns during the month of May. For example, last year GIG was able to reach over eight million people through their Chef to Plate program that has restaurants that currently offer gluten free menus promote Celiac and GF awareness for the month of May.

In addition to helping people currently diagnosed with Celiacs or gluten intolerance, declaring May as an official Celiac Awareness Month can help us increase the number of accurate diagnoses. This is where I got the attention of Congress: misdiagnosed Celiac patients are a drain on the economy. Before diagnosis, many Celiacs see close to ten physicians, racking up medical bills. Additionally, they are usually prescribed medications to treat symptoms that could be completely eradicated by following a gluten free diet. They undergo expensive procedures like endoscopies, blood tests, colonoscopies etc racking up more and more medical bills, potentially going into debt. Furthermore, undiagnosed people tend to be very sick, they may have to leave the workforce, start getting disability checks from the government or declare themselves as unemployed.

Personally, I feel like the quality of life arguments should be enough to tug at the heart strings of members of Congress but if not I am happy to make arguments that tug on the purse strings, and those arguments happen to quite plentiful.

I found overwhelming support for the Celiac Awareness Month Resolution. The staff aides asked me several follow up questions and even asked me for my contact information so they could get more information for their Senator on this issue.

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The Kennedy Caucus Room

I had such a wonderful time. Not only did I meet great people, true champions for their causes, but I got to spend time with NFCA and CDF as well as eat amazing food. I know the food is the least important part of the day but I have to admit it really was amazing to see gluten free accommodations made so efficiently and without error. The luncheon held in the Kennedy Caucus Room was a sandwich buffet that had gluten free and gluten-containing options but avoided cross contamination by separating and labeling the types of bread and providing condiments in packets instead of a common serving bowl and a knife to spread onto the bread.

The people I met today were so inspiring because many of them are patients who came out to represent the needs of people living with their conditions. These are people who took off work in order to promote a good cause, people who were willing to put themselves on the spot and speak to members of Congress about very personal matters. I have always said how much I love the gluten free community because it is such a supportive, connected and united group of people but what I didn’t know is that we have a host of brothers and sisters out there living with digestive diseases who are fighting the same battles for quality of life. I’m proud to be gluten free and proud to be a part of DDNC!

Consider signing up for the Digestive Disease National Coalition next year! It is an experience worth having!!

-CC

3 Responses to “This Week On The Hill: Celiac Disease and Politics”

  1. Molly March 5, 2013 at 1:09 pm #

    Glad to hear it was a safe and productive time! Major props to you and other advocates for your work raising awareness. :)

Trackbacks/Pingbacks

  1. How To Make the Most of Celiac Awareness Month! | Cc Gluten Freed - April 30, 2013

    [...] am taking Celiac Awareness Month a little more personally than years past! In March, I went to the Digestive Disease National Coalition and met with Senators to discuss Resolution 550 that officially makes May  National Celiac [...]

  2. CC Gluten Freed in 2013 | Cc Gluten Freed - January 3, 2014

    […] In March I attended the Digestive Disease National Coalition, heading the Maryland advocates group  and talking to Maryland’s Senators and some Representatives about policies that, if passed, would benefit our community. For example, we advocated that the Senate should continue to declare May Celiac Awareness month! You can read about my trip to the Hill here. […]

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