Elemental (Amino Acid-Based) Formula Coverage

For some children with Eosinophilic Disorders, an amino acid-based elemental formula is a large part, if not the only form of nutrition that enters their body each day.  Due to allergies and reactions to so many foods, they are unable to consume a regular diet of everyday foods.  These formulas are life-sustaining to these children.  Without them they are sick each day, some to the point of vomiting constantly or having recurrent diarrhea. 

With this in mind, one would think that the insurance world would see it as a necessary medical need, therefor providing coverage for this extremely expensive and unpalatable medical food.  In most states, this is not the case.  There are only 14 states that provide coverage for elemental formulas at this time, and some of those with minimal coverage at best.  Here is that list with links to their coverage:

• Arizona
• Connecticut
• Illinois
• Maine
• Maryland
• Massachusetts
• Minnesota
• New Hampshire
• New Jersey
• New York
• Oregon
• Rhode Island
• Texas
• South Dakota

Even if your insurance company is based in one of these states and provides coverage for formula, it may however, not see Eosinophilic Disorders as one of the covered illnesses under the policy.  It may also only provide partial coverage if the child consumes the formula orally, whereas if the child is tube fed, it would be covered at 100%.  These situations are so frustrating when all we want as parents is to see our children get well and stop feeling sick.  Fighting insurance companies takes up time and energy that we would rather be using to comfort our child, but with the cost of the formula, it is important to know what the options are, or at least where to begin.

Believe me, I know there is much more information out there than I am going to share here, but this is just what I have found, and some of what we used during our own appeal process for Andrew's formula coverage.  Although we live in North Carolina (a state that does not have formula legislation), our insurance is based out of Rhode Island.  EE is not a covered illness for formula under our insurance plan, which led us to file an appeal.  Rhode Island's coverage for formula is $2,500 per year.  Andrew has been on an elemental only diet since January 2.  He averages about 8 to 9 E028 Splash juice boxes a day.  That is approximately 255 per month.  One case contains 27 boxes and is $115.  That is about $1100 a month.  Occasionally there are coupons, but never the less, we had used the insurance money within the first 2 months.  But can we just stop feeding our son what makes him feel healthy because insurance no longer covers it?  Do we put him on a feeding tube because our insurance company is willing to pay for a very expensive surgery with possible complications and then they will pay for formula coverage?  So fighting the insurance companies is what we have to work with.

Finding out what your state allows is a start.  Check out the links above if your insurance is in one of those states.  If it allows coverage, see if EGID's if a covered benefit, if not file anyway, but you will probably have to file an appeal.  If your state does not have coverage, you do not have insurance or you need to write an appeal, here are some things you can look into:

WIC - The Women, Infants and Children Nutrition Program (WIC) is a government program designed to assist families with nutritional needs.  Neocate and Elecare, formula providers, are usually reimbursed by most state WIC programs when ordered by a physician and medical necessity is evident.  You would need to contact your health department to see if you qualify.

Medicaid - Medicaid is a combination state and Federal government run program. Each state has its own guidelines as to coverage of medical food.  Again, contact your health department to see if you would be eligible for Neocate or Elecare through Medicaid.

Sample Insurance Letters - The Neocate website has sample insurance letters for each of their products.

• Neocate Infant DHA and ARA
• Neocate Infant
• Neocate One+
• Necoate Junior
• Neocate Junior plus prebiotics
• Neocate Nutra
• E028 Splash
• Pepdite Junior
• Letter of medical necessity for Elecare products

Patient Assistance Foundation - The Abbott Nutrition Patient Assistance Foundation may be able to help assist with formula costs if you don't have the funds.  Visit The Partnership for Prescription Assistance website for downloadable applications. You can call The Partnership toll-free at (800) 222-6885 (Option 5).

APFED - Tips for Obtaining Formula Coverage and Formula Usage and Coverage in EGID (Click on Advocacy tab, then scroll down until you see Formula Coverage)

Children's Magic - (Children's Milk Allergy and Gastrointestinal Coalition (MAGIC)) - 

 "Children’s Milk Allergy and Gastrointestinal Coalition (MAGIC) is committed to promoting healthcare coverage and reimbursement of elemental formulas for children who are unable to consume a natural, life-sustaining diet due to various allergies or diseases. "  This website gives more information on how to obtain coverage, as well as how to begin legislation in your state if coverage is not already provided.

Website resources:

Neocate

Elecare

Children's Magic

APFED

Formula coverage is worth fighting for.  Our children's health and happiness are definitely worth the fight.  My wish is that some day there is a cure for this horrible disease, but until that day, my wish is that insurance companies do the right thing and provide coverage for the life sustaining food that these children need.  We pay our premiums, they should do their part... it is only a drop in the bucket for them, but life altering for our children.