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After the Result- Newborn Screening Follow-Up

  • Since the inception of newborn screening (NBS), countless newborns have been identified and treated prior to harmful effects of their condition developing. NBS has been so successful that the CDC named it as one of the top 10 public health achievements of the 21st century. For this week’s blog, we’re going to explore what happens after the diagnosis is made. There are currently 20 different types of core in-born errors of metabolism (IEM) disorders that can be detected via NBS, all of which are treatable and manageable with a careful diet consisting of medical foods and formulas. Unfortunately, one of the notable short falls of our NBS program occurs once the baby gets home.

    While medical foods and formulas are widely available, accessing them is a different story. The amount of coverage for these essential treatments varies by state, with Oregon leading the way with one of the more robust coverage requirements. For families who have high income, spending an additional $1000 on a very specialized diet per month for each child with an IEM is manageable. For low-income families, federally sponsored insurance programs (e.g. Medicaid) cover the costs of medical foods and formulas. Unlike the other two cases, middle class families often times struggle to pay for such a specialized medical diet out of pocket as private health insurance companies often find loopholes in state laws to avoid covering the costs. In fact, some insurance companies avoid covering the costs in states with laws that require coverage by claiming that the company is based outside the state, thereby exempt from the state’s coverage requirement. For example, California law requires insurance companies to cover foods and formula, but a health insurance company operating on the east coast can avoid this requirement since its headquarters is located out of state even though the company is covering Californian patients. To combat these loopholes and ensure no patients are deprived of medically necessary foods and formula on the basis of cost, Senator John Kerry, along with his House counterpart, Representative Tammy Baldwin, introduced the Medical Foods Equity Act (MFEA) in 2009. Unfortunately, both the House and Senate versions (H.R.1311 & S.311) have once again remained in their respective committees in the 112th Congress. It looks like we’ll all have to wait until the 113th Congress for MFEA to undergo the legislative process again, hopefully with better results!


    For more information on the status of this bill

    For more information on the breakdown of coverage at the state level


    1 Comment

    This blog is so informative and well written. I had no idea about these laws - this is helpful information to have considering the pending birth of my son Xiaoyan!

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