High Cost of Food Allergies

A recent study was released, estimating the gross annual cost of food allergies to American families in the aggregate.  This study is creating quite the buzz.  In the past couple of days, many articles have been written about this study by CNN, USA Today, CBS, LA Times, Salon, Medical News Today, and Fox News.  There are a probably a bunch more I missed.

All of this buzz is about a study published in JAMA Pediatrics led by Dr. Ruchi Gupta, a pediatrician at Ann & Robert H. Lurie Children's Hospital of Chicago and a professor at Northwestern University's Feinberg School of Medicine.  The researchers surveyed 1,643 parents in the U.S. who have a child with food allergies.  The results of the study are that $25 billion is spent each year on costs related to food allergies.

These costs are disproportionately born by the parents of the child, because they relate to things not covered by insurance, such as cost of food, opportunity cost to parents who have to forego work advancements and jobs, and childcare costs. None of this is news to food allergy parents though.

As a food allergy parent, the list of added costs associated with raising a child with food allergies includes:

• Cost of specialty foods.
• Child care- specifically, someone to come to the home, instead of using a daycare center or going to someone else's home.
• Medicines, including 4 sets of epinephrine auto-injectors, one for the nurse at school, one for the kid at school, one for the kid to carry around outside of school, and the spare set at home, a nebulizer and medicine for the neb, a rescue inhaler, Benadryl, Benadryl cream, and steroids.
• Bringing food everywhere we go.  Every family party, dinner, wedding, birthday, holiday, restaurant (if we dare), after school programs and activities, ball game, and other food containing events, require us to prepare and bring our daughter's own food.  This is true even if it is an event that charges a cover charge which includes food, like PTA events or dinner shows or events.  We basically pay for the dinner for our child and then she does not eat it.  Instead she eats a second dinner for which we also paid.
• Many food allergy parents happily buy the whole class, troop, team, or group a treat, if it means their child is included and is safe. 
• Lost job opportunities or fewer hours at the jobs we have, in order to go to doctors' appointments, to volunteer to be the room parent, or to be the snack mom at the ball games. 

These are the costs of keeping food allergy kids alive. The thing is that most parents will pay any price to  protect their children.  Food allergy parents are a great example of this. 

While the media immediately goes to questioning why the rates of food allergies have increased whenever they cover any food allergy related topic, including this one, I would love to see discussion of how we can change the tax laws to help defray some of these costs to families of children suffering from food allergies.  The current tax laws provide little or no benefit, as they do not include deductions for childcare, purchasing food for others in order to keep your child safe, or lost opportunities.  Maybe specialty food could be a separate deduction, not one lumped in with medical costs, with an unattainable threshold.   
    

Gleason v. United Airlines: Peanuts on Planes

As much as people like to complain about the legal system and perceived frivolous lawsuits, our legal system is one of the greatest ways to make changes for the better in this country.  All kinds of civil rights movements have started from lawsuits, whether successful or not.  Food allergies are now starting to surface in more lawsuits and I think we will see a shift in laws as a result of these suits in the next 5 years.

One of the suits I have been watching for about 4 months is the Gleason v. United Airlines case.  Alisa Gleason brought filed a complaint against United Airlines in the Eastern District of California (case no. 13-01064) after she suffered an allergic reaction to peanuts in flight and the flight needed to make an emergency landing in order for her to get treated for her full blown anaphylactic reaction.

Alisa has a severe peanut allergy.  According to her complaint, Alisa called United Airlines' customer service prior to purchasing her ticket to ask whether accommodations would be made for her peanut allergy if she travelled on the airline.  She claims that she then purchased the ticket from Orland to Sacramento.  She alleges that the United Airlines customer service agent told her to tell the agent at the ticket counter about her allergy and then the allergy would be accommodated, including an announcement to the other passengers that a passenger has a severe peanut allergy. 

Alisa claims that when she arrived at the ticket counter, she informed the agent of her peanut allergy, but the agent told her to remind the head flight attendant aboard her flight of her severe peanut allergy and that her condition would need to be accommodated.  Then she says she told the head flight attendant of her allergy and requested a peanut free flight, but the flight attendant told her that no announcement regarding the allergy would be made.  The reason she was given was that United Airlines could not accommodate every kind of allergy.  Alisa claims that the head flight attendant did tell her that no peanut products would be distributed in the flight, so she remained on the flight.

Alisa alleges that one hour in to the flight she began to experience difficulty breathing and swallowing and administered the Epi-pen.  Her condition then rapidly deteriorated and she lapsed in and out of consciousness.  Another passenger alerted the flight crew to Alisa's condition and told them that she would not survive the remaining 45 minutes of the flight.  The flight then made an emergency landing in Missouri where Alisa was transported to the hospital.

Stories in the press covering this incident claim that there was a woman who was eating peanuts and that she would not have eaten them if she knew there was another passenger with a peanut allergy.

United so far denies the allegations, but says it is still investigating.  The complaint was filed in May 2013 and probably won't go to trial until 2014.    Alisa has demanded a jury trial.

If this suit makes it to trial, it could determine what, if any, accommodations an airline must make for travelers with severe allergies. 

The Rules on Tax Deductions for Special Food Necessary Because of Food Allergies

You may have heard that if a food is medically necessary because of life threatening food allergies, it is tax deductible.  This is true, but there are steep thresholds before you will have any real tax savings.

First, the food must be medically necessary and must cost more than the food it is substituting.  Some examples of what might constitute a medically necessary substitute is soy milk, in lieu of cow's milk, due to a life threatening milk allergy; gluten free flour in lieu of wheat flour, due to a life threatening wheat allergy; or Sunbutter in lieu of peanut butter, due to a life threatening peanut allergy.  The allergy must be diagnosed by the doctor and the doctor must recommend strict avoidance.  That last part is a given with life threatening food allergies. 

Second, you may only deduct the cost of the product that is above and beyond what the product you are substituting costs.  So, if soy milk costs $5.00 per gallon and cow's milk is $2.00 per gallon, then you get a $3.00 deduction for each gallon of soy milk you buy.  You have to save the receipts, keep a log of the purchase price, estimated price of food you are substituting, and difference.  As you can imagine, this can be tedious.  Imagine doing this for every single allergy substitute product you purchase for a whole year.  But, if you made it part of your routine when you return from the grocery store to take the receipt and put the numbers in the spreadsheet, then the process may be able to work its way into your routine.

Third, for the first 10% of your adjusted gross income worth of food deductions, you get no actual tax deduction.  Your adjusted gross income is found on Line 37 of tax form 1040.  If you make $70,000 per year, you would have to have $7,000 in food deductions for which you receive no tax deduction first, and then on the $7,001 dollar in food deductions you can deduct one dollar, and then every dollar after that above the $7,000 threshold.  If you make $100,000, then your threshold is $10,000, and so on.  

Is it worth all of the effort?  That depends on your gross income and how much extra you spend on your allergic kid.  However, since this deduction is not limited to food for food allergies, you can also deduct your other medical expenses, which might help you reach the threshold faster.  You can deduct any co-pays or out of pocket costs your insurance does not cover.  You can deduct the deductible you had to pay before your insurance kicked in.  This applies to all medical expenses, including doctors, dentists, and eye doctors.  Medical devices such as nebulizers count.  Prescription drugs count.  Maybe it was a bad year and someone in your family was hospitalized or maybe you had a baby.  A 10% copay in those circumstances can be substantial.  If you or your spouse lost your job and your income went down, so would your threshold.  The food deduction might just push you across the threshold into a real money deduction.  For many people, though, it is probably not worth the effort. 

Are you kidding, Milk in Chalk? One More Consideration for 504 Plans

This past Spring 2013, results of a study conducted in
Spain were released, which concludes that children with milk allergies may react to the dust from chalk in their schools.  Why?  Because the common chalk used by schools and teachers contains the milk protein casein.  Yes, milk in chalk.  That means children can breath in the allergen and have an allergic reaction.  The study is summarized at this link:  Milk in Chalk. 

To be specific, the chalk in question is called "no dust" or "low dust" or "anti dust" chalk.  The formula to eliminate the dustiness of chalk apparently includes milk.  A simple Google search revealed that this has been covered in the press a lot actually.  See this recent article from just a couple of weeks ago.  The study showed that children with a milk allergy could have an allergic reaction from breathing in the chalk particles in the air, but I wonder if anyone has studied what happens if the children use the chalk and get it on their hands or what happens if they get it in their mouths, from cross contact with their hands or directly.  I have even more questions, such as whether the study examined the most severely milk allergic kids who have anaphylactic allergies to small amounts of protein or those with severe asthma, who are probably already sensitive to regular chalk dust particles.        

Legally, what does all of this mean?  Well, first, because chalk is not a food, Milk or any other allergen does not need to be included on the chalk's label.  In other words, you will have no warning that this product may cause a reaction in your milk allergic kid.  It might also explain mystery reactions or asthma attacks your child may have had at home or school.

This is something that should be raised in discussing the 504 Plan with your school if your child is allergic to milk.  Ask whether the school has any chalk boards, either on the walls or portable, and if so, what kind of chalk is used.  Ask the school to contact the manufacturer and get a written statement as to whether the chalk contains casein or any milk protein.  Restrict the chalk from any room or environment in which your child is located during the school day, not just when your child is in the room.  If the dust is spread around the room before your child enters, it still has a chance of coming into contact with your child.  Ask about art projects which might contain chalk. 

This definitely leaves me wondering what else contains milk protein that we don't know about. 

Food Allergy Bill For Restaurants

Some states, including Massachusetts, Rhode Island, and Maryland, have enacted bills in the past two years, in an effort to make dining out at restaurants safer for food allergy customers.  The bills general require that the restaurant post signs requiring patrons to inform the restaurant of any food allergies, that the food preparation and sanitation certification process include a video on food allergies, that posters about food allergies be displayed in the food preparation area, and that restaurants can choose to be designated as "allergy friendly" by complying with certain requirements.

The feedback on these laws on other allergy blogs and websites seems to be that they are a great step in the right direction, but they do not go far enough.  Illinois has a very similar bill pending in the state senate right now.  Tomorrow, I have a meeting with Senator Cunningham and hopefully Representative Burke to discuss the pending bill.  The Illinois Senate Bill 0037 is available here.  Senate Bill 0037

While it is extremely important that the government do something to educate restaurants and food preparers about food allergies, it seems like the only material improvement as a result of this proposed law would be the food allergy friendly designation-- if it's done right.  Some criticisms of the other laws enacted is that the allergy friendly designation may lull the customer into a false sense of safety at a restaurant because the requirements are not tight enough.  Another criticism was that the requirement for every restaurant (not just designated allergy friendly restaurants) to place on their menu that customers should inform staff about food allergies, causes customers to interpret such a note as "wow, this restaurant is aware of food allergy issues," when in fact, the restaurant may not be safe at all.  The designation should better read "State law requires that we inform customers that they should tell restaurant staff of food allergies." 

So, tomorrow at my meeting, I will be giving a long list of suggestions for requirements a restaurant must meet in order to win the title "allergy friendly" (some of which I admittedly borrowed from comments on other websites related to other laws), including:
  

1.       Staff takes food allergies seriously, is courteous and treats customers with respect.

2.       Mandatory training for all staff for:

a.       understand food allergies and anaphylaxis;

b.      cross contamination and how to prevent it;

c.       restaurant procedures for handling food allergic customer’s orders, including who is the designated person to handle the orders and the duties of that designated person in preparing the food.

d.      Staff trained in food allergy emergency plan- call 911, how to use epinephrine, etc.

3.       Formal training and certification, which has periodic renewal.

4.       Employee who answers the phone is knowledgeable about ingredients and food allergy procedures in restaurant.

5.       For sit down restaurants, a way to designate a food allergy table when it is reserved and option to take customer’s phone number so chef can call ahead of time.

6.       Staff able to clearly communicate the food allergy policy to customer.

7.       Manager or chef willing to visit food allergy customer’s table to discuss meal before ordering.

8.       Clear protocol for communication of food allergies from front of house to chef.

9.       Means to designate that a specific dish is a food allergy order.

10.   For food allergy orders, designation of one person to take order, prepare food and deliver food to customer.

11.   Any written orders have clear and obvious food allergy notice.

12.   Staff willing to take guidance from customer about how to prepare food if necessary.

13.   Separate cleaned and prep areas for food allergy orders.

14.   Separate cookware for each food allergy order.

15.   Before each food allergy order preparation, wash hands and/or change gloves.

16.   Option to get a state designation or certification of a restaurant which does not use specific allergens, where allergen is not on the premises at all-  ie peanut free restaurant, milk and egg free (vegan) restaurant.

17.   Allergy menus available, with symbols of which items contain each of top 8 allergens.

18.   Ingredient list for each menu item available, including cooking oils and other things fried in deep fryers with item.

19.   Online menus and ingredients available.

If anyone reading this blog has any further suggestions, I would love to hear them.  Hopefully, I get a good reception from the legislators tomorrow and I will definitely post an update. 

Pay Attention This is Important: Are Food Allergies a Disabilities Under the ADA?

So, severe life threatening food allergies are a qualified disability under the Americans with Disabilities Act ("ADA"), right?  Did you know that no federal court has specifically ruled that they are?

Last winter, there was a lot of discussion in the press about the Department of Justice's settlement with Lesley University, in which basically assumed that the students with severe food allergies had qualified disabilities under the ADA.  Q&A Lesley Settlement  But, that was a settlement, which is not binding on courts or other universities.  If it had been a District Court decision, it would be binding on all other courts in that jurisdiction and courts outside the jurisdiction would consider it advisory.  Universities would certainly feel compelled to take notice of a federal court decision.

That is not to say that schools and universities have not taken notice of the settlement, because they have.  But still, if a school decides to take the position that a life threatening food allergy is not a disability qualified under the ADA, there is no decision for a student to rely upon in fighting that decision.  Usually, the problems arise when a school is not saying the student does not have a disability, but the school and the student's parents disagree as to how much must be done to accommodate the student.

In Williams v. Daniels, food allergy parents have sued their son's principal, superintendent, and school district for not adequately protecting their son who is severely allergic to peanuts.  The case is pending in the United States District Court, Eastern District of Michigan, case number 12-cv-15387.  In the complaint, the plaintiffs allege, among other things, that

1)   the school agreed on safe popsicles for a treat to be handed out and then, without notice, switched the treat without approval of the parents;

2)   the school reviewed items to be sold as a fundraiser with the food allergy parents, but subsequently the school added items which were not safe and then the day the items were to be picked up by other parents, the food allergy parents were told to pick up their child from school early;

3)  the food allergic child was repetitively bullied by his classmates and the principal refused to take any action to stop the harassment; and

4)  the school sent a note home to all parents, naming the food allergic child by name, which caused retaliation from teachers, staff and other students, blaming the food allergic student for the restrictions on treats and snacks.

Why is this case important?  Because Count I of the complaint alleges a violation of the Americans with Disabilities Act.  The District Court is asked to decide whether the severely food allergic child is a "qualified individual" under the ADA.  If the court finds that he is, food allergic kids will have some legal precedent to support protection under the ADA.  If the court finds that severe food allergies are not a protected disability, it could be a devastating blow to the movement towards protecting food allergic kids in schools and elsewhere. 

The case is in the very early stages, so it may not even end in a judgment, if it is settled first.  However, it is interesting to review some of the defenses asserted by the school, such as qualified governmental immunity (not a valid defense in this circumstance), that the food allergic kid "was at all times provided a free appropriate public education," and there are no damages or the damages are de minimis.  It will also be interesting to see what facts come out about the alleged discrimination by the school and the alleged bullying.

I will continue to watch this one and provide any important updates, which I don't expect to happen until 2014 sometime.   
 

How Safe is Our Food? FDA Recalls for Undeclared Food Allergens Increasing Trend

"Allergens were the single largest cause of food recalls, composing approximately 60 percent of recalls initiated in the second quarter [2013], up from 34 percent in the first quarter.  Allergens have been the first or second largest cause of [FDA] food recalls in the past six quarters."  Stericycle Expert RECALL- Recall Index- 2nd Quarter 2013.

 

The Food and Drug Administration ("FDA") is the government agency of the Department of Health and Human Services which regulates food, except for certain farmed and raw products, including but not limited to meat, poultry, eggs, and milk, which is regulated by the Food Safety and Inspection Service ("FSIS"), an agency of the U.S. Department of Agriculture ("USDA").  Both have processes for recalling foods for undeclared allergens. 

 

There are three basic ways a product can be recalled for containing an undeclared food allergen:

 

1) Someone has an allergic reaction to the product and reports the suspected undeclared allergen.  This would require follow up by either the company or the FDA or FSIS to test the product.  If you get sick from a suspected undeclared allergen, always save the product in the freezer, so it can be tested.

2)  The company self-tests and realizes there has been a breach of its safety protocol and volunteers to recall the product.

3) The FDA or FSIS send in inspectors who test the products and find an undeclared allergen.

 

Let's talk "May Contain" or "Manufactured on Shared Equipment" or "Manufactured in a Facility" statements (or "Squishy Statements").  FALCPA does not require these specific statements.  What FALCPA requires is black and white:  If the food contains one of the top 8 allergens, then that allergen must be disclosed as an ingredient on the label.   

 

This has created a gray area in labeling, because an allergen may not be an intended ingredient, but it may find its way into the product by cross contamination.  If the food does contain an allergen through cross contamination, it is not declared on the label, and someone has an allergic reaction, the label is not FALCPA compliant and the company has liability. 

 

So why Squishy Statements instead of just testing the food?  The ELISA tests used by manufacturers to test food for allergens can only be calibrated to a certain parts per million ("ppm"), so they cannot really know the level of cross contamination.  This is a problem when the tests for a food allergen are not as sensitive as a food allergic person.  For example, a peanut ELISA may only detect peanuts to 2.5 ppm, but a severely allergic person may react to 0.4 ppm.  Food Safety Magazine Article  So, the ELISA test may come back negative, but the peanut allergic consumer may have an allergic reaction from the product which contains a minute amount of allergen because of shared equipment or facility.  This is how the birth of the Squishy Statements came about. 

 

Since there is no requirement for a manufacturer to put a Squishy Statement on their product, even if it is made in a facility or on equipment with an allergen, some simply don't.  Then there are some manufacturers who, with or without a Squishy Statement, don't test for the allergens if they are not on the ingredient list.  Note, that in either case, if the product is actually contaminated with the allergen, the manufacture is not in compliance with FALCPA in these circumstances.  It is the job of the FDA and FSIS to protect against these bad practices or even accidental contaminations. 

 

So, how are the FDA and FSIS different in their processes?  The FDA seemed to really be the first agency to start rapidly recalling products after the Food Allergy Labeling and Consumer Protection Act of 2004 ("FALCPA") was enacted.  However, many of those recalls were voluntary recalls by manufacturers trying work out the kinks in complying with the Act.  In general, the FDA is more reactive and the FSIS is more proactive when it comes to product labeling.  The FSIS is more focused on the labeling up front, before there is a problem.  However, until recently, while the FSIS was focused on labeling generally, it was not focused on food allergens.  That tide seems to be changing.

 

A recent notice issued by the FSIS directs its food inspectors to spend time specifically examining the way a food manufacturing plant treats food allergens.  This includes determining which of the top 8 (eggs, milk, peanut, tree nuts, fish, shellfish, wheat, soy) are contained in the facility, how such allergens are kept separate from other foods, examining all sauces and additives to meats and other foods, and looking at the labels of the products to make sure they adequately disclose all allergens.  Note, this is a proactive inspection- before FSIS is notified of any problem.  This notice, which was issued in April 2013, is available online.  FSIS NOTICE 

 

The recent FSIS notice is likely a result of the increase in recalls for undeclared allergens, which exceed FSIS recalls for pathogens by far. Stericycle USDA Report - 2nd Quarter 2013  Similarly, undeclared allergens were 60% of the recalls by the FDA for the same quarter.   Stericycle Expert RECALL- Recall Index- 2nd Quarter 2013. 

 

So, how do we keep our kids safe in light of the fact that millions of units of products with undeclared allergens are entering our grocery stores?  First, watch the recalls yourself.  You can do this by checking here FDA Recalls every few days or once a week to make sure that nothing in your house or on your grocery list was recalled or sign up here FDA Email for email alerts of recalls from the FDA, as they occur.  Second, do not take the chance on products with Squishy Statements.  Those statements are put there to alert you to a risk.  Do not ignore them.  The companies may be trying to comply with FALCPA, but cannot really know whether their product contains the allergen because the testing is not there yet. 

 

While Squishy Statements and recalls are how we are protected, no bite is ever risk free.