Tag Archives: politics

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.

image-1

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.

image-3

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.

image-4 image-5

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

Should being gluten free impact your politics?

24 Oct

The election is right around the corner! Make sure your vote is an informed one!

Although the issue of food policy was under highlighted in the Presidential debates, it is nonetheless of political importance. From the farm bill, which impacts the cost and availability of food, to USDA public health promotional campaigns, to FDA food regulations, there are many avenues US leadership can take to change the way we access food in this country.

So what are the issues that a savvy Celiac should consider before casting their vote? The farm bill, food safety programs and access to and promotion of nutritional foods are the key issues that I want to explore so that I can make an informed decision at the polls.

This post is not an endorsement of either candidate.

FARM BILL

The farm bill impacts a population much broader than US farmers. When (or should I say if?) the farm bill is passed it will impact the cost of food as well as our access to certain foods. The next President will not only have to deal with getting the farm bill passed but will also play a role in shaping it.

As someone who is gluten free, the availability of gluten free food is a very important issue. Since gluten free foods tend to be more expensive than products made with wheat flour it would be in our best interest to support policies that make farming more economical, especially for small farmers. Here is the catch: the farm bill attempts to support all farmers, making all food more accessible and affordable. Cheaper brown rice would be great but if wheat flour is also made more accessible and even more affordable than it already is we are likely to see some unintended consequences.

If wheat flour is made more expensive don’t you think that restaurants might think twice about dredging their meats in flour? They might consider using an alternative like cornmeal or rice flour. Cost and accessibility shape our food options both at the market and when dining out.

The President has repeatedly articulated the importance of passing a farm bill this year. He calls for adequate protection of American farmers from draught and natural disasters and promotes diverse, specialty crops like fruits, nuts and veggies (which is great for us!).

Romney has taken jabs at Obama during the campaign about his failure to get the House the pass the bill. Romney thinks that Obama does not have the leadership skills necessary to get a bill passed. He argued that “[P]eople have been waiting a long time for a farm bill. And the president has to exert the kind of presidential leadership it takes to get the House and the Senate together and actually pass a farm bill.”

Romney supports disaster relief as well but also indirectly supports subsidizing American farmers. Romney says that other nations subsidize their farmers and if the US is to compete we will need to do the same.

When you get down into the nitty-gritty of both candidates’ farm bill positions there are more similarities than differences. Both candidates will cut about $30 billion out of agricultural spending by eliminating many of the subsidies that currently go to crop insurance companies. Much of the farm bill is allocated towards food stamps. Here lies the biggest difference between an Obama supported farm bill and a Romney supported bill: Romney/Ryan support decreasing the amount of people using food stamps. They said that they don’t need to cut the program to reach their goal. Romney said, “I want to make sure we get people off food stamps, not by cutting the program but by getting them good jobs.”

FOOD SAFETY

President Obama created several programs that promote food safety. He established the Food Safety Working Group, which is a group that focuses on updating and improving US food safety systems. Obama also increased the authority of the FDA so they can more effectively enforce food safety regulations.

Although Romney believes in the importance of access to safe foods his approach to securing such food is very different from Obama’s approach.

Romney supports a more hands off approach to preventing food-borne illnesses. He argues that “preventative practices” are the best way to prevent outbreaks. These practices/protocol would be developed by the private sector because Romney believes that the people in the fields are the best equipped to handle this issue. Romney’s campaign states that it is most cost efficient and effective to allow food growers, handlers and processors to create food safety protocol. As for the role of the FDA, Romney’s campaign said that the Romney Administration would prioritize collaboration between the FDA and the private farm sector on this issue.

NUTRITION

The Obama family is very committed to promoting healthful food choices in schools and encouraging people of all ages to lead active lifestyles. Michelle Obama worked to get more salad bars into schools, President Obama supported the USDA’s new food pyramid, MyPlate as well as their Fresh Fruit and Vegetables Snack Program and both of the Obamas encourage cities to get involved with the Let’s Move! program which provides local towns and cities with tools to get community members exercising. President Obama believes that partnering with the private sector and supporting federal programs to promote healthful lifestyles is the best way to improve the health of the public.

Romney does not support nanny-laws and is committed to making sure the federal government does not overstep its role in American lives. These beliefs about the role of the government shape Romney’s strategies for tackling public health.

In response to questions about promoting nutrition the Romney campaign gave a quick and short response:

“The federal government should not dictate what every American eats… An emphasis on a balanced diet will be crucial to addressing this crisis and public health programs in a Romney Administration will highlight the importance of healthy eating.”

Romney and his campaign have not articulated a plan nor a specific commitment to promoting nutrition and healthful lifestyle choices.

—————————————————————————————————————————————————

Now that we know where each candidate stands on these issues the next question is “Does it matter?” As someone who studied Public Health it greatly matters to me but this post isn’t about public health (in general) it is about whether or not being gluten free should impact the way you vote.

The answer is: probably not. The gluten free diet, though more popular and well-known than ever before, is far from the norm. A farm bill that cuts the profitability of wheat farmers is not going to change the fact that people love their gluten. It is an ingredient that has dominated palates across continents. Although I do believe it is important for voters to take the issues I described above into consideration when casting their vote, I do not think that our gluten free fate is in the hands of the future President.

Ultimately, it comes down to constant vigilance, commitment and willingness to speak up for your needs. There is no quick-fix solution to the lack of awareness about gluten intolerance, Celiacs and food allergies in this country but every time you explain it to a waiter at a local restaurant or to a new acquaintance you are making a difference. It isn’t just about being gluten free! I am talking about spreading awareness about restricted diets and cross contamination, issues that make the lives of millions so challenging in the US. Not many people can say that when they dine out they help change the world but we can.

-CC

Sources

http://www.unitedfresh.org/programs/wppc/presidential_nominees_responses

http://articles.aberdeennews.com/2012-08-24/farmforum/33373582_1_farm-bill-programs-that-benefit-farmers-farm-safety

http://cornandsoybeandigest.com/issues/obama-romney-weigh-more-agriculture-priorities

http://insidetrade.com/Inside-Trade-General/Public-Content-World-Trade-Online/romney-hits-obama-on-farm-bill-gridlock-reiterates-trade-policy-plans/menu-id-896.html?S=SM

%d bloggers like this: