The ACA passed by Congress in 2010 requires the U.S. Department of Health and Human Services (HHS) to determine what essential health benefits will become standard in the insurance exchanges that will be implemented in 2014. Many Americans, especially those working for smaller companies, will receive their health insurance coverage through these exchanges. The ACA currently does not include medical foods (formula and foods modified to be low in protein) for the treatment of inborn errors of metabolism as essential health benefits. HHS will be making the final determination of what will be covered under the essential health benefits in the next few months. If medical foods are not included, states that want to offer medical foods coverage in the insurance exchanges will have to pay for this additional cost - even if a state law requiring coverage is currently in place. This increase in cost has to be paid by the state - it cannot be passed on to beneficiaries through higher premiums. Since state budgets are already tight, some adults and families may lose the current coverage they have.
How to Help
There is limited time to advocate for medical foods to be included as an essential health benefit. The NPKUA is asking you to send a letter or email to HHS and ask them to include medical foods for the treatment of PKU and similar inborn errors of metabolism as an essential health benefit under the chronic disease management category. The following talking points can assist you with writing your letter or email, but please do not feel limited by these. The more variety of messages sent, the more impact we can make.
- Let them know who you are and your relation to PKU or other inborn error of metabolism.
- Tell them that since newborn screening and treatment is standard for IEM’s, including medical foods as an essential health benefit must also then be a standard benefit.
- There are devastating consequences of NOT covering medical foods for the treatment of PKU and other inborn errors of metabolism. Untreated PKU causes brain damage and mental retardation.
- Access and coverage for treatment means the difference of leading a healthy and productive life versus being institutionalized.
- Coverage of medical foods is the right and moral thing to do.
Please send your letter or email today to HHS. They should be sent to:
Sherry Glied, Assistant Secretary for Planning and Evaluation
US Dept of Health and Human Services
200 Independence Ave SW, 415-F
Washington, DC 20201
Sherry.glied@hhs.gov