Law Details...
IMPORTANT NOTE REGARDING LD 658: LD 658 addresses diseases and conditions, including severe food allergies, food protein intolerance, short bowel syndrome, eosiniphilic disorders, and other conditions in which an elemental diet is required. LD 658 does not address Inborn Errors of Metabolism. Maine already has legislation in place to help children diagnosed with this disorder.
The Story
Every day, children are born with potentially life threatening allergies and related diseases which prohibit them from consuming the foods and formulas required for proper life sustaining nutrition. These children, 2% of the total U.S. infant and children’s population, are left with few options for sustenance. For many, the best option, a diet of amino acid-based elemental formulas that provides the nutrition required for natural growth and development is unavailable. And for others, the simplest of remedies, the usage of liquid formulas to maintain proper nutrition, has become extremely invasive and very expensive.
Most children typically encounter one or more of the following three FIXABLE problems in their pursuit of a healthy life;
- Some children are unable to benefit from life saving amino acid-based elemental foods because they are simply born into a family that cannot afford the high cost of amino acid-based elemental formulas;
- In other cases, in order to receive proper nutrition, children and infants are often forced to undergo unnecessary invasive procedures, such as an operation to insert a feeding a tube into a child’s stomach, because health insurers refuse to cover less invasive feeding methods;
- Many children are put through a battery of tests and clinical visits costing thousands of dollars and causing parental mental anguish before a diagnosis is determined.
The problems above are easily fixable and should not be impediments to life-sustaining nutrition.
So What is the Problem?
Families over the poverty level and earning a ‘living wage’ are at a chronic disadvantage in gaining affordable access to adequate health care support. Currently, the Women, Infants, and Children’s Program (WIC) and MaineCare cover these medically necessary elemental formulas for infants and children suffering from food allergies and disease. However, most private insurance providers in Maine do not include coverage, creating a “baby gap” of families with private insurance, but without reimbursement assistance.
Children in families at the margins of the economic spectrum, both poor and rich, can maintain a nutritious and life sustaining diet while alleviating their allergies and digestive problems either via personal wealth or state health services. However, middle and working class families, the overwhelming majority, are severely left behind. Often these families, not receiving assistance from their private insurance provider, are unable to afford the high cost of these medically necessary formulas. Subsequently, their children go untreated, or in providing proper nutrition to their children, families face disastrous financial hardships -- even though they have health insurance. Infants and children who are treated often outgrow their allergy; if we truly want no child left behind, insurers must cover these specialized formulas and ensure that all of our children, regardless of financial consequence, are guaranteed a healthy existence.
Bottle vs. Feeding Tube
There are two ways to feed a child elemental formulas:
• Orally by using a bottle or cup, or;
• Enterally - through a feeding tube surgically inserted into the child’s stomach.In most instances insurers will cover the cost of the formula when administered through a feeding tube. They will also cover the surgical procedure to insert the tube, and the hospital admission (inpatient or outpatient), but they will not cover the cost of the same formula if it is delivered orally through a bottle or cup. This is a contradiction in logic. Oral feeding is less invasive, less expensive, and much easier on the child and the parents than surgically inserting a feeding tube into an infant’s stomach. Insurers should be required to cover elemental formulas, regardless of delivery method, as long as they are required and being administered at the direction of a health care professional.
The Insurance Provider Prospective
Aetna’s Policy on elemental formulas is quite clear. Elemental formula is considered to be a medical item "only when it is administered enterally (i.e., by feeding tube) or parenterally (i.e., by intravenous administration)". "Aetna does not cover nutritional support that is taken orally (i.e., by mouth), unless mandated by state law." If a child can be fed using a cup or bottle, the exact same formula is not covered.
The text quoted above was taken directly out of a widely available Aetna Clinical Policy Bulletin available on their website at http://www.aetna.com/cpb/medical/data/1_99/0061.html.
NOTE: Aetna regularly changes the location of this information, so I will try to keep it updated (let us know if the page no longer exists and we will update it).
Cost to Families Without Coverage
Average Cost of Elemental Formula’s Per Year: $5,075
Average cost of “Regular” Formula Per Year: $2,175.00
Average Cost of Breast Feeding Per Year: $0.00
Average Expenditures for a Family of 4 Earning the Median Income That Purchases an Elemental Formula
Housing
$23,621.00
42%
Health Care and Other Insurance
$8,533.00
15%
Food
$7,472.00
14%
Miscellaneous
$7,662.00
14%
Elemental Formula
$5,075.00
9%
Personal Taxes
$2,838.00
5%
Median U.S. Income
$55,201.00
100%
Amino Acid Based Elemental Formula and “regular” formula pricing based on data from a national pharmacies chain. Quantity needed based on Ross Laboratory's estimate of 14,500 ounces of formula needed per year. From www.kidsource.com . Chart based on data obtained from the U.S. Census Bureau; www.census.gov/compendia/statab/tables/07s0669.xls
Cost to Insurers to Provide Coverage
During a hearing, Ohio State Senator Gene Krebs stated that formula legislation “would raise premiums 1.6 pennies a year for the average family” because so few are actually affected. (CNN.com article) Amino acid-based elemental formulas cost the median family approximately 15% of their annual income. An increase of this size is a small price to pay for a child’s well being and for family financial relief.
No parent should be forced into making their child’s health a financial decision and no child should be forced to undergo several diagnostic tests and procedures in order to get proper nutrition when a less invasive process and delivery method exists. Children who are allergic to multiple foods or basic infant formulas that are forced to continue eating typical foods experience persistent diarrhea, bloody stools, poor weight gain, persistent vomiting, severe skin rashes, respiratory distress, extreme fussiness, and an overall failure to thrive. In some children, the reaction to the offending food/allergen may be so severe that the child can suffer shock, breathing difficulty, convulsions and possibly death.
States With Legislative Mandates for Formula
Six states, in one form or another, cover elemental formulas. These states have recognized the importance of a healthy child’s existence while also recognizing that insurance premiums will not skyrocket. In fact, amino acid-based elemental formulas can do just the opposite and limit long-term health expenses. By enabling a child to grow and thrive normally, the cost of future tests and treatments due to the retardation of normal growth and development associated with improper nutrition is dramatically reduced.
States with legislative mandates for amino acid-based formula coverage are: Arizona, Connecticut, Massachusetts, New Hampshire, New Jersey and New York.
What Is An Amino Acid Based Elemental Formula?
Amino acid-based elemental formulas are made from individual (single) non-allergenic amino acids unlike regular dairy (milk or soy based) formulas and foods that contain many complete proteins. Amino acid-based elemental formulas are made of proteins broken down to their “elemental level” so that they can be easily absorbed and digested. In many cases, amino acid-based elemental formulas are the only thing an infant or child can properly digest and tolerate due to various allergies or gastrointestinal conditions.
What Is The Solution To This Crisis?
The lack of private insurance reimbursement assistance for amino acid-based elemental formulas and medically necessary foods for the children who are allergic to certain foods is the cause of the medical crisis. Providing these formulas and medical food is the solution. In most states today, children face deteriorating health often resulting in hospitalization, because these products are not covered by insurance, although MaineCare and WIC do cover for those qualifying for those programs.
Amino acid-based elemental formulas are not new and their efficacy has long been proven. The fact is that within two weeks of being placed on an amino acid-based elemental formula or medical food, infants and children experience a world of difference. Hives and rashes clear up, diarrhea disappears, and all the child’s symptoms begin to clear up. After a few months, the children will have returned to normal weight, continue normal growth, and become normal, healthy children. Amino acid-based elemental formulas work wonders when it comes to helping children get back on a track toward a healthy existence.
