Check Your State Laws
There are currently 18 states (Arizona, Connecticut, Kentucky, Illinois, Maine, Maryland, Massachusetts, Minnesota, Missouri, Nebraska, New Hampshire, New Jersey, New York, Oregon, Pennsylvania, Rhode Island, Texas, Washington) with laws mandating enteral formula coverage. However, some are written more broadly than others in that they may name specific medical conditions or have age limitations. Note that self-funded insurance plans do not always have to follow state laws such as these.
South Dakota doesn’t have a law, but it has an insurer’s agreement among several companies to cover amino acid-based formulas.
For the most up to date information see the American Partnership For Eosinophilic Disorder’s page on state laws.
Health Insurance Appeal
The first course of action is to appeal any insurance denial. You should get letters of medical necessity from the appropriate specialists or other medical professionals that detail why your child requires this formula for his/her medical condition, and states the possible medical consequences if your child isn’t able to continue to use the prescribed formula.
There are templates available from many formula companies:
WIC and Medicaid cover a number of enteral formulas. These programs are based on family income and geared towards lower income families.
Children under 5 may qualify for WIC. To find out more, see these links:
Medicaid eligibility varies from state to state, but all very low-income families are eligible. Children with significant special needs, disabilities, or medical issues may qualify for Medicaid Waivers. Medicaid Waivers allow Medicaid to become the secondary insurance for children who have qualifying health needs. Each state has a number of different waiver programs. See our page on Medicaid and Medicaid Waivers for more information.
Check with Human Resources
If your health insurance plan is provided through a mid-size to larger employer, there is a good chance it is a self-funded plan. A self-funded plan is one where the employer pays for the benefits that employees receive directly. Self-funded plans do not need to follow the state laws on formula coverage, though most do. In a self-funded plan, the employer has the option of overriding a denial to provide coverage. It is worth talking to the Human Resource department and sharing your child’s medical need, the financial burden it will place on your family, and the potential medical consequences if coverage is denied. You may need to provide additional documentation from medical professionals.
Patient Assistance Programs
Some formula makers have patient assistance programs to help families get formula at reduced rates or even for free if they can document a significant financial need. You can ask your doctor or nurse practitioner if they have the forms for patient assistance programs. Medical professionals do need to complete parts of the form for you. Some offices will submit them for you, once you provide the needed financial information.
You may also find the forms yourself by Googling “Patient Assistance Programs” and the company that makes the formula.
Here are some links to some program applications and information:
- Mead-Johnson (Enfamil, Nutramigen, Pregestimil, and many others)
- Abbott Nutrition (Pediasure, Elecare, Similac, Alimentum, and many others)
- Nestle (Boost, Compleat, Peptamen, Nutren, Vivonex, and many others) – call (847) 808-5300
Medical Supply and Formula Exchanges
There are a number of medical supply and formula exchanges where people list their no longer needed supplies for the cost of shipping and possibly copay costs. This isn’t a long-term solution, but you may be able to use these exchanges while you are working out longer-term solutions for enteral food coverage. A list of exchanges is available here.