Our Family Story:

During the spring and summer 2019, we struggled to understand what our 10-month-old son’s, Nolan, medical conditions were. For several months had been dealing with severe medical issues. He had been to his primary care physician (PCP), dermatologist, and the emergency room several times to help alleviate and get to the bottom of his symptoms.

Our first and second 911 experience, was a living nightmare for my wife and I. Two weeks prior to our first 911 experience, we had been to a local emergency room. The trip to the ER was due to a rash from his severe eczema, at least at the time that was our thought. As part of the discharge care plan, the doctor instructed us that Nolan most likely had an allergic reaction and if we suspect an allergic reaction to administer liquid Benadryl. If Nolan rejected it, we are to call 911.

It was a typical dinner time event in our house. We sat down for dinner with our three-year-old daughter and our son Nolan. As part of our meal, we fed Nolan a baby jar of green beans. The rest of our night was normal. Baths, bed time reading for the kids and settled them in for bed. Nolan had been sleeping for a couple of hours, which was about 3 hours after dinner. Our nightmare began when Nolan started to cry and scream. It’s the cry that parents can tell is a different cry from all other typical cries. When we went to get Nolan from his crib, he was projectile vomiting. An episode that would last 15-20 minutes. We tried to give him liquid Benadryl. However, Nolan immediately vomited and his symptoms exacerbated to the point of him gasping for air. At this point in time, we had no diagnose of allergies and thus no EpiPen. I immediately called 911 and Nolan was rushed to the hospital. We were so thankful for local fire department and paramedics that Nolan made it to the hospital and was okay.

We made trip after trip to his PCP, dermatologist, and the emergency room to help alleviate symptoms. Finally, on June 3, 2019 we were able to meet with an allergist, and Nolan was diagnosed with multiple food allergies. The food allergies for Nolan included, milk, egg, nuts, oats and green beans. As part of our learning process, our allergist informed us Nolan could be allergic to additional foods but have a delayed allergic reaction hours later.

We finally felt a sense of relief having a diagnosis, an amazing allergist and a care plan. As part of his care plan, due to allergies he had been prescribed and could only take Nutramigen. Well our second nightmare would start… dealing with the insurance company. The month of June 2019, it took my wife until the last week of June to finally get the prior authorization approved in order to get Nolan’s formula. The amount of hours my wife and our doctor spent with the insurance company was unconscionable.

When July 1st came, as part of annual open enrollment, we had switched insurance companies. Given Nolan had a pre-existing condition that was covered, we read the plan rules and were comfortable insurance would cover it. When it came time to refill our next prescription, my wife did her due diligence and informed our doctor and pharmacy of the insurance change. To simplify multiple phone calls with the insurance company, the doctor was great and resubmitted the prior-authorization to our insurance company. The request for pre-authorization to insurance company and coverage for the formula was denied as well as two appeals by our doctor.

The reason we were given is that Nolan’s diagnosis is not listed as a serious illness to which coverage is warranted. Through education with our doctors, reading our discharge care plans and speaking with our allergist, his allergy diagnosis is a severe, potentially life-threatening allergic diagnosis. Symptoms can affect several areas of the body, including breathing and blood circulation. We explained Nolan’s condition, as did our doctor, several times to our insurance company.

My wife, Erin, had spent hours on the phone trying to get explanations and answers to appealing this decision with no progress. Our allergist had been amazing advocating for Nolan. The doctor had submitted appeals on our behalf and it was denied for a second time on July 30, 2019. In the words of our doctor, Nolan’s condition is severe and life threatening and if he eats the wrong food he could die.

Hypoallergenic infant formula powder is extremely expensive. Through the pharmacy, they provide a 12.6 oz of formula which costs $33.99 per can. Due to Nolan’s nutritional needs, he needed approximately 3.5 cans a week. The cost weekly is approximately $118 and yearly is approximately $6,136 for formula alone. While we are certainly lucky enough to have the means to make ends meet, this added cost to our family budget has and will have a huge impact. And certainly not sustainable for the years to come.

To add complexity to our ordeal, due to Nolan’s condition, he had not gained weight in 4 months. For an infant, the current time period is a critical development period for their body and brain. We continue to work with his primary care, allergist and dermatologist to pinpoint the cause of his severe reactions and consistent lack of weight gain. However, communicating with the insurance company had all been exhausted to the point of desperation.

In regards to our story with our Insurance company, as the summer weeks past we ran into more hurdles. We received notification in the middle of August that the prior-authorization was approved. As I started to feel a heavy burden start to lift, it all come back. The prior authorization was actually approved as an oral medication under durable medical equipment and only approved until Nolan turned 1. Additionally, this medication was not exempt from a copay. The complexity with this added layer, is that there is a $500 deductible for durable medical equipment versus a $100 pharmacy deductible. Which is higher out of pocket expense for families.

When we were finally told all this, we needed to make a decision whether to use insurance or not. We re-engaged with our insurance company, as well as the medical supply vendor used by our insurance company, and we were told formula would not be approved once Nolan reaches the age of 1.
As a family, we decided it would be cheaper not to use insurance. At the time, our son would turn 1 for several weeks and out of pocket expense for a few weeks was a little cheaper than the $500 deductible. More importantly the emotional stress we endured; we decided no longer to deal with the insurance company on this issue.

Our entire story paints a much bigger issue. There are several major hurdles we had to deal with:
1. The complexities of families and providers dealing with the prior authorization process (for us it was weeks)
2. Prescriptions needed in life/death situations are being covered as “durable medical equipment”
3. Families having a higher out of pocket expense due to deductibles falling under “durable medical equipment”
4. Prescriptions needed in life/death situations are not exempt from a copay

While we decided not to use insurance, our son’s health condition would take another turn. In September, on the day of Nolan’s first birthday, he had another allergic reaction. Nolan had another episode of projectile vomiting twice in one night, he started to turn blue due to not being able to breath. I administered his EpiPen and called 911. Thankfully, due to the quick response of the Lynn Fire Department Nolan made it to the hospital. Shortly after Nolan’s ER visit, he was diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES). Our son’s care team has expanded to a PCP, dermatologist, immunologist for his allergies, immunologist for his FPIES, nutritionist, and feeding team specialists.

The day after using the EpiPen on our son, we went to the local pharmacy to fill a new prescription. At which time my wife was told that there were not any generic EpiPens available in our area and that we would have to wait until the beginning of the week for a possible shipment to be delivered. My wife asked if any pharmacy’s in our area had the name brand EpiPen. The pharmacist explained that due to the wording of the prescription that he was unable to fill the prescription with the name brand that he had in stock. After a lengthy emotional conversation and multiple computer searches the pharmacist was able to locate a generic version at another local pharmacy. As a parent who had just hours earlier had to administer an EpiPen on my child, it is hard to understand why we were not provided the lifesaving medication that was available.

Lucky for us we have the means and a community network to help escalate this issue to try and come up with solutions.

While I’m fighting and advocating for my family, I know other families out there fighting with this specific issue as well. I’m more than happy to share my experience globally if it would be helpful. But change is needed to make this process easier for families to navigate. Semper Fi, The Sheehan Family

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.