Back in May, the National Foundation for Celiac Awareness (NFCA) reported on the Gluten in Medicine Disclosure Act, a proposed bill that would require all drugs to disclose any gluten-containing ingredients. Interested in learning more, NFCA caught up with New York Democratic State Representative Nita Lowey, who first put this bill in motion.

Q&A with New York Democratic State Representative Nita Lowey

Question 1

Q. H.R. 2003 (Gluten in Medicine Disclosure Act) is another chapter in your substantial contributions to the food allergen community. In addition to leading the passage of the Food Allergen Labeling Consumer Protection Act (FALCPA), you have called for the FDA to rule on gluten-free food labeling. Where did this drive to label food allergens originate? Is there a personal history of allergen issues with you or your constituents?

A. I have been working on celiac disease and non-celiac gluten sensitivity (‘gluten sensitivity) for several years. I believe it is high time that we treat it for what it is: a chronic condition that affects millions of Americans. Consumers deserve to know whether the foods they are eating and the medicines they are taking contain gluten or not.

I began to really focus on celiac disease and gluten sensitivity in the late 1990s after meeting with parents of food-allergic children. I authored the Food Allergen Labeling and Consumer Protection Act to improve the readability and reliability of food ingredient statements. One of my constituents taught me that just like those with food allergies, celiac disease sufferers rely on food labels to protect their health. She explained that although those with celiac disease do not go into, say, anaphylactic shock if they consume gluten, the consequences of leaving the disease undiagnosed or untreated can be severe. I heard so many stories about trips to the grocery store meaning having to scour labels to determine whether food contained wheat, barley, rye, dairy or shellfish. So it became clear that our government has a responsibility to give consumers the tools they need to protect their health.

Question 2

Q. According to govtrack.us, the prognosis for this bill has a 2% chance of getting past committee and 0% chance of being enacted. Further, the previous incarnation of this bill, the Gluten in Medicine Identification Act of 2012, died in committee. What can the celiac disease community do to support the passage of this bill into law?

A. It is our responsibility to protect American’s health by giving them information on the label to ensure that their medications help – not hurt – them. So while, yes, we are waging an uphill battle, we are not going to give up. The more members of Congress learn about celiac disease and gluten sensitivity – and the sooner they understand that this is an important health issue from Americans in every Congressional district – the more momentum there will be for these new consumer protections.

Question 3

Q. The growth of research and overall interest in gluten-free products has been strong and sustained over the past few years.Do you anticipate that this growth in the gluten-free marketplace will have any influence on the passage of bills such as H.R. 2003? Labeling has typically been the focus of the patient/consumer, but support from the food industry has also increased – do you think this type of industry influence might also be true among pharmaceutical companies?

A. I would hope that drug manufacturers would support new, commonsense labels that help inform their customers about whether their products contain gluten. After all, it is in their own interest to make sure their products are not harming the very people they’re intended to help.

Question 4

Q. In addition to the rising interest and market growth in gluten-free products, there has been a general increase in the prevalence of celiac disease and food allergies.
Has there been a push for federally-funded research to investigate this trend? What can the celiac disease and food allergen communities do to encourage the funding of this medical research?

A. About a year ago, federal funding from the National Institutes of Health helped publish a study on the increasing prevalence of celiac disease in this country. This was an important step in our understanding of the disease, but more funding for research will help strengthen the movement for legislation to benefit the celiac community. The more the celiac disease and food allergen communities tell their story, the better chance there is that we can pass legislation and strengthen funding medical research to protect those communities. I first got involved in this issue because I heard about my constituents’ struggles with the disease, and I realized that there were citizens across the country facing those same challenges who needed our help.

Question 5

Q. What has prevented the FDA from finalizing its rule regarding gluten-free labeling? Is the ruling out of the FDA’s hands, so to speak? What can the food allergen community do to encourage FDA regulation on this matter?

A. I am frustrated that, a decade since the passage of the Food Allergen Labeling and Consumer Protection Act, the FDA has yet to lay out clear standards for the regulation of gluten-free labeling. In the meantime, an unregulated market for gluten-free products continues to grow, threatening the health of millions of Americans.

Question 6

Q. It has been almost 10 years since the passage of FALCPA. What sort of feedback have you received regarding the law?

A. Over the last decade, I have heard over and over from people around the country how important food labels are to helping them and their children manage their day-to-day health. So I remain incredibly proud that the Food Allergen Labeling and Consumer Protection Act became law and is helping to protect consumers and their families. The feedback has been overwhelmingly positive.

NFCA thanks Rep. Lowey for taking the time to respond to these questions and for her continuing support of the gluten-free and food allergy communities.