Christine Brown, Executive Director of NPKUA discusses the importance of passing the Medical Foods Equity Act and how you can help. Just click on the image to
view the video.MEDICAL FOODS AND ESSENTIAL HEALTH BENEFITS
In December, 2011, the Department of Health and Human Services (HHS) issued a “pre-rule bulletin” announcing its decision to offer “flexibility” to the states in the selection of essential health benefits. There will be no national set of essential health benefits. Each state can choose its essential health benefits from the following four choices:
1. The largest plan by enrollment in any of the three largest small group insurance products in the State’s small group market
2. Any of the largest three State employee health benefit plans by enrollment
3. Any of the largest three national FEHBP plan options by enrollment
4. The largest insured commercial non-Medicaid Health Maintenance Organization (HMO) operating in the State.
This “flexibility plan” does not guarantee coverage for formula or foods modified to be low in protein to treat PKU and other inborn errors of metabolism. Even in states that have mandates, there is no guarantee that the state’s choice of essential health benefits will include coverage of medical foods.
How You Can HelpWhile the NPKUA plans to advocate with each state regarding its choice of essential health benefits, we can still make a difference by advocating directly with HHS.
We need you to submit written comments to HHS asking them to (1) ensure that all of the essential health benefits plans provide coverage for medical foods for the treatment of PKU and similar inborn errors of metabolism under the chronic disease management category; (2) ensure that people with PKU are not discriminated against based on their disability.
Emails should be sent to: essentialhealthbenefits@cms.hhs.gov. HHS will only accept comments through January 31, 2012, so please act quickly!
The following talking points can assist you with writing your 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.
- PKU is a rare genetic disorder that requires lifelong treatment to avoid mental retardation, neurological problems, and other physical and mental complications.
- Newborn screening is a mandatory public health program. Failing to include coverage for medical foods discriminates against people with PKU based on their disability. 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. Not covering medical foods is catastrophic and fatal. Failing to ensure coverage for PKU and other inborn errors of metabolism will lead to damaged babies, severe disability and the death of many children.
- The cost to include coverage for the treatment of PKU and inborn errors of metabolism is minimal, and far less than the enormous cost of caring for sick and disabled children and adults.
We only have until January 31, 2012 to submit our comments to HHS.
Send Your Email To:essentialhealthbenefits@cms.hhs.gov
LET'S GET MOVING FOR MEDICAL FOODS: FEDERAL ADVOCACY EFFORTS
The Senate Bill is S.311 and was introduced by Senator John Kerry (MA). The House Bill is H.R. 1311 and was introduced by Representative Baldwin (WI). Let's work together to make history! Even if you currently have coverage for medical food, please take a few moments to make a difference for the many that are struggling with access to treatment.
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The Medical Foods Equity Act would:
- Require all insurance companies to cover the cost of medical foods
- Require that insurers cover the medical equipment and supplies needed to administer medical foods
- Cover the use of pharmacological doses of vitamins and amino acids.
- The Secretary of Health and Human Services would determine the minimum yearly coverage for all health insurance plans
- These new federal standards would not pre-empt state standards that require a higher minimum standard.
Please contact your Senator today ask them to co-sponsor the Medical Foods Equity Act! Click HERE to find your Senator...>
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