The Affordable Care Act (ACA) was passed by Congress in 2010.  Several of the provisions of the act have already been enacted, such as: 

  • Children under the age of 19 can no longer be denied insurance for pre-existing conditions.
  • Young adults up to the age of 26 can now stay on  their parents insurance plan
  • Elimination all lifetime maximum limits

In addition, beginning in 2014, all health plans must:

  • Stop denying coverage for all people with pre-existing conditions
  • Eliminate annual limits on “essential benefits” like prescription drugs. In the law however, “essential benefits” do not apply to self funded plans currently regulated by ERISA (the Employee Retirement Income Security Act of 1974)

The NPKUA has been advocating with the U.S. Department of Health and Human Services (HHS) for the past two years to include medical foods to treat inborn errors of metabolism as an essential health benefit under the ACA.  Unfortunately, HHS ultimately decided to let each State decide what to include in its essential health benefits under the ten broad categories defined by the law.

Click here for the NPKUA position statement on Medical Foods Coverage in the ACA.

One of the main components of the ACA was that nearly everyone will be required to have a health insurance plan.  To make this easier to do, the bill requires all states to set up health insurance exchanges where small businesses and individuals can choose a health insurance policy that fits their health needs and that they can afford. 

Click Here to access a list of the essential health benefit plan selections made by each state as well as those states that did not make a selection.

Click Here to learn more about the insurance exchanges and essential health benefits.

These exchanges are meant to be one-stop marketplaces (via websites) where people can go shop for health insurance beginning in January 2014.  To ensure that these plans provide adequate coverage, each state was required to submit a benchmark plan for coverage to HHS by November 2012 that included coverage in 10 broad categories (i.e. essential health benefits). 

Click here to download an informational handout detailing the Affordable Care Act insurance exchanges and the coverage for medical foods for PKU. 

To learn more about the new health insurance marketplace, visit Please also visit for more information on how the insurance exchanges will work best for you.

Unfortunately, there is NO guarantee that medical foods to treat PKU will be covered under the new exchanges because medial foods were never categorized as an essential health benefit under the ACA.

NEW - Statement of Support for Healthcare for Individuals with PKU

What does this mean for medical foods coverage?

  • If your state currently has a state mandate for coverage, then most likely your state’s benchmark plan will includes coverage for plans that will operate in the insurance exchange marketplace in 2014.
  • If your state currently has no mandate for coverage, then most likely the plans operating in the insurance exchange in 2014 in your state will not offer medical foods coverage.
  • If an insurance exchange plan does not offer coverage for medical foods, there is NO APPEAL PROCESS in place to appeal that decision even though medical foods are medically necessary to treat PKU and similar inborn errors.

The NPKUA will continue to put pressure on HHS as they release further regulations on the implementation of the insurance exchanges.  Our voice for coverage will not go away at the national level. 

Below is a list of our current talking points:

  • PKU is a rare genetic disorder that requires lifelong treatment to avoid brain damage, which can cause severe mental retardation and other neurological complications.
  • Newborn screening for PKU is a mandatory public health program and the Affordable Care Act requires insurance plans to provide coverage of newborn screening.
  • Failing to ensure coverage for medical foods discriminates against people with PKU based on their disability, which is expressly prohibited by the Affordable Care Act. Medical foods are as important to a person with PKU as insulin is to a person with diabetes.
  • There are decades of proven evidence-based success in treating people with PKU with medical foods. Failing to ensure coverage for PKU is catastrophic and will lead to damaged babies and severe disability.

To learn more about the new health insurance marketplace, visit