Question 1

Q. It’s clear from your legislative history that you have an interest in product labeling as a consumer protection measure. You sponsored a bill in 2009 to label food containers that are composed of bisphenol A. Relevant to the celiac disease community, you sponsored the Gluten in Medicine Identification Act of 2012 and the Gluten in Medication Disclosure Act of 2013. What inspired you to sponsor these two bills? Is there a personal history of allergen issues with you or your constituents?

A. I have a general philosophy that information is power and you need to empower consumers. I have always tried to be on the side of the consumer. We must let people know what’s in their food, their prescription medication, and other products that affect our health and wellness. So, the Gluten in Medicine Identification Act of 2012 and the Gluten in Medication Disclosure Act of 2013 were influenced by that general philosophy. As far as the gluten bill goes, we were tipped off by a constituent a while ago that said they were having problems with gluten in one of their prescription medications. My wife also has a gluten-related disorder. From her, I’ve seen the very high level of suffering when a person with celiac disease eats or digests gluten when he or she knows not to and can’t figure out where the gluten came from. Not only does the physical sickness have an effect, but the emotional, mental, and psychological strain of “Where did this come from?,” “How did this happen?,” “What was cross-contaminated?” and all that goes with it. The bills started with a general philosophy and then a constituent, and now, my wife, so we are in it for the long haul. We are trying to work with pharmaceutical companies. I think the companies should label gluten in medications on their own. I don’t think it would be a big expense. They should be made aware of what happens to people when they inadvertently digest gluten, but sometimes it takes legislative action. That’s what we are going to do and that’s what we’re willing to do.

Question 2

Q. 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 think so. As this problem gets bigger, they are going to recognize it. It’s not quite the equivalent of food where consumers are going out and choosing in the marketplace to buy gluten-free foods. With medication, lots of times you don’t know what’s in it and have to determine if the gluten is worse than the problem that you are taking the medication for. It’s slightly more complicated. At the same time, as the celiac disease and gluten-free lobbies get a little bigger and more members of Congress are somehow connected to somebody who has it, I think that may push things along within the pharmaceutical industry. However, it is going to take some time and we need to get organized. I know that your organization and others are involved in the process, but we need to step it up and begin the lobbying process to move this legislation forward.

Question 3

Q. According to govtrack.us on July 31, 2013, the prognosis for this bill had a 6% chance of getting past committee and 1% chance of being enacted. Further, the previous incarnation of this bill died in committee. What can be done within the committee to improve the chances of the bill’s progression? What can the celiac disease and food allergy communities do to support the passage of this bill into law?

A. I think the celiac disease and gluten-free communities need to be very well organized. They should look at who is on that committee, where the membership is, and make sure that you start connecting your members in a particular state or region to that member of Congress. Also, have a letter-writing campaign and coordinate visits to the Congressional office in the district and in Washington, D.C. Put on the full-court press, but be targeted at the members that are on that committee. The minute you do that, you are going to start getting more members’ attention. When you ask them, they can ask the chairman to hold a hearing on the bill, pass the bill, and get it out of committee. Unfortunately, you only do that through lobbying. A lot of people think that lobbyist is a dirty word, but everybody’s a lobbyist. For average people to come down and lobby on behalf of any issue is important. They are Americans and they have the right to petition their government. They need to do that. I think that your organization can help identify who those people are on the Energy and Commerce Committee and help connect your members to those Congressional committee members. Put the heat on. That’s the only way to do it.

Question 4

Q. NFCA believes that pharmacists can play a key role in protecting the health of consumers with celiac disease and non-celiac gluten sensitivity (‘gluten sensitivity’) by understanding the concerns about gluten in medications. Do you agree, and if so, how can we encourage more pharmacists to take a part in this issue?

A. It would take the same kind of approach as the one for the committee. Don’t just work with your local pharmacist. Work at the national level with the national level of celiac disease and gluten-free organizations. Work closely with pharmacist organizations and begin to communicate with the pharmacists. Communicate to them that you need to work together and that their membership needs to become more aware of gluten-related disorders. The work can be done cooperatively. One issue is, when a lot of people hear ‘allergy,’ they think of the sniffles and red eyes. They don’t realize the reactions that people have, the kind of lifestyle changes that need to be in place, and the level of pain and suffering for someone with a gluten-related disorder who has ingested gluten. Pharmacists are on that list of people that we need to educate. It needs to be a grassroots effort that reaches out to the political world, but also gets ahold of the pharmacist organizations at the state and federal level and begin to lobby.

Question 5

Q. In addition to the rising interest 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 allergy communities do to encourage the funding of this research?

A. I am not exactly sure. I would need to check. The National Institutes of Health (NIH) is quite big. I would imagine that there is some ongoing research. One of the issues we have is the severe cuts that are going on at NIH in general. There is a war against science that is happening right now. Many people think that the government has no position in investing in research and are trying to figure out what the answers are to these complex problems. Whether the increase in prevalence is due to food, genetically-modified food or something else, the answer is unclear. We have some idea, but more research needs to be done so we can clarify our understanding of the disease and what can we do to prevent people from getting it. Is it activated by stress? It might be a component, but more research is going to need to be done. I think part of that is also lobbying on behalf of research and lobbying on behalf of an increased budget for the NIH. Think about how much money that will save our healthcare system in the long run. All the side effects that someone with celiac disease experiences, such as infertility, could potentially cost a lot of money in the long run. With a little research money, we can potentially figure out how to prevent some of these problems. That support for funding research should be on the list of things to negotiate, to promote, and to talk about through your organization.

Question 6

Q. Where would you suggest that the celiac disease and food allergy communities go to encourage federally-funded research? Would you recommend contacting the NIH directly or the FDA?

A. You would go about it the same way: through the budget process with the Budget Committee in the House of Representatives and then through the Appropriations Committee and the sub-committee for Labor, Health, and Education. That sub-committee funds the NIH. Find out who those members are and begin to find your members that are in their district somewhere in the United States and directly lobby them. Call up those legislators and go visit them. Someone who has celiac disease or a gluten-related disorder can go to a member of Congress, sit down with them, and explain that he or she is the Congressperson’s constituent, lives in their neighborhoods, goes to their churches, and has celiac disease. In doing so, they can explain why we need that legislator’s help with Congressman Ryan’s bill. It’s that simple. The legislator may see that it’s not a heavy lift and get right on the bill. If it’s about NIH funding, talk about why that funding is needed. Begin to make the argument even if the argument’s not going to win the day today or next year. You’ve got to begin the process and it might take a couple of years, but you have to stay at it. That’s what the democracy in the republic that we live in is all about. It’s about being active in a kind of hand-to-hand combat sense. You’ve got access to your local legislators. Call them up, get their numbers, and let them know that you are with NFCA and you want to have a meeting with them. Bring in two or three members that are involved locally and you can begin to move the needle a little bit. At least, you can begin to get some people’s attention on it. I think that’s what’s important. If they get a call from NFCA, an official organization with many members, they are going to take your meeting, especially if they are local constituents. Then, you begin the lobbying process from there. It’s really the only strategy. You have got to begin to influence the people who can influence. People want to be responsive to their constituents and, if the constituents are calling them, then they are to answer and try to be helpful.