Our post today is a special 2 part guest blog entry from Brenda Eich. Brenda was instrumental in getting several insurance companies in South Dakota to sign an agreement guaranteeing coverage of amino acid-based formulas. We would like to thank her for sharing her story with us. This is part 1 of her 2 part story.
The Initial Food Allergy Diagnosis
You have just left the doctor's office with your infant in your arms. Now you have those doctor's words circling in your mind. "Your child has multiple food allergies and will need a special amino acid-based formula like Neocate. You can't feed your child anything that has milk, soy, oats, citrus, wheat or nuts in it. Start reading labels with a microscope. "If you are lucky, you are only avoiding two or three foods. For most children with protein intolerances, IGG or IGE allergies, you are avoiding many foods.
The first few years of our little guy's life were really a blur. I spent countless hours in the kitchen trying to make meals out of a short safe-foods list.He was very small (and still is) so my main “job” was to feed him. That sounds a lot easier than it is. Most allergic children have food aversions. We continued to visit the allergist, pediatrician, GI specialist and nutritionist. All of the sudden, this little bundle of joy became a huge job like I have never known (and he is our third child). I am blessed to be a stay-at-home-mom but could it really be THIS hard??
It’s More Than Just Dealing with Food Issues
In addition to the food issues,we also had social issues. Can we really go to church, Bible study, MOPS, storytime and the park where other children are running around with frosting or cheesy crackers on their fingers? Scary! I found myself quarantining ourselves off during this journey. My main goal was to keep him safe while increasing his weight ever ever so slightly each month.
The expenses of Neocate, pediatric doctor's appointments, GI specialist appointments, allergists andmedicine (reflux) were more than we could bear. After several years of purchasing Neocate out of pocket, I started submitting letters to our insurance company. All of them came back with a standard “Request Denied”.
How My Grassroots Effort for Insurance Coverage Started
Then I met a wonderful family who has three boys. Their oldest is five and has eosinophilic esophagitis (EE). He desperately needs Neocate but with no insurance coverage, the cost is too high. His mother actually works for the hospital and the hospital insurance plan wouldn't cover Neocate. This little guy is the tiniest little five year old you have ever seen. It breaks my heart to know that he isn't the only little person who isn't getting the nutrition he needs. Many children who need Neocate don't get nearly enough or don't get it at all.
Then I heard of one family who tube feeds their child because if you tube feed, it is covered by insurance. Unbelievable! They said they hope when he doesn't need Neocate, he can be weaned off tube feeding and not have food aversions. This is just unacceptable. Neocate needs to be covered by insurance.
My blood began to boil...
After about three years of dealing with food allergies and purchasing Neocate, I decided to reach out to any others and see if they were receiving insurance coverage. We have a website where moms meet in our local area. I got back two responses from other moms who were purchasing Neocate for their little food allergy people also.
I chatted with those moms and the more I chatted, the more determined I got!
Stop back for the second half of Brenda Eich’s story about how she started a grassroots campaign to win medical insurance coverage in South Dakota for amino acid-based formulas.