Jan Gambino Jan Gambino's Blog

Formula Coverage: One Mom Can Make a Difference

One way to change health care policy in the United States is to vote for a presidential candidate who supports your plan for medical insurance coverage. Another way is to participate in the process of changing laws that affect insurance coverage. In recent weeks, I have been working with a group called the Children’s Milk Allergy and Gastrointestinal Coalition (www.childrensmagic.org) to change health care insurance coverage for elemental formula in the state of Maryland.

What is Elemental Formula?

Elemental formulas or Amino Acid formulas with brand names such as Neocate and Elecare are specialized formulas used for infants and children with severe food allergies (milk soy protein intolerance) and eosinophilic esophagitis. The elemental formulas are only used under the guidance of a physician and require a doctor’s order. These formulas are used by children who because of their conditions are unable to process or absorb “normal” foods or formula; for some conditions these formulas are used to heal the body so that food trials can take place. It is estimated that the average yearly cost of elemental formula is $5075.00 compared to regular formula ($2175.00) however some families spend upwards of $10.000 or even $15,000 a year.

Problems with Coverage

Prescription only elemental formula is very expensive yet it is often the most effective medical treatment for children with severe food allergies or eosinophilic esophagitis. If your child has a medical condition that requires medication, the insurance company would pay for the medication. Yet, if your child needs a treatment that is not a medication but a medical food, it is not covered.

Some insurance companies will only pay for the elemental formula if it is fed to a child via a feeding tube surgically inserted into the stomach. My daughter’s specialized formula was only covered by insurance once she was so sick and malnourished that she could not eat by mouth and needed formula via a feeding tube. It is unfortunate that a child needs to be so sick that they cannot eat or needs to have a surgical procedure to insert a tube to receive a treatment that can be given orally in a cup or bottle. Let me tell you that it is extremely difficult to place a child in daycare or school with a feeding tube!

Parents Do Have a Voice

Some states have changed the laws to require insurance companies to pay for elemental formula. These states are: Arizona, Connecticut, Minnesota, New Hampshire, New Jersey and New York. Children’s Magic is working on changing the state laws in Florida, Virginia, Pennsylvania and Maryland in 2008. Parents can join Children’s Magic and help to change the law in their state. You can join the Children’s Magic coalition and contact your state legislators by mail, email or a face to face meeting.

As a constituent, you can call your legislator and make an appointment to have a face to face meeting. My local legislator happens to be the Speaker of the House so I spent a recent afternoon in the chambers of the Maryland State House to discuss the legislation and share my story. As the bill makes it way through the Maryland State Legislature, I will give you updates.


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doctor first!