[Congressional Record Volume 155, Number 168 (Tuesday, November 10, 2009)]
[Senate]
[Page S11349]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. KERRY (for himself and Mr. Casey):
  S. 2766. A bill to provide for the coverage of medically necessary 
food under Federal health programs and private health insurance; to the 
Committee on Finance.
  Mr. KERRY. Mr. President, each year an estimated 2,550 children in 
the U.S. are diagnosed with an inborn error of metabolism disorder. For 
the rest of their lives they will need modified foods that are void of 
the nutrients their body is incapable of processing. They may also 
require supplementation with pharmacological doses of vitamins and 
amino acids. The good news is that with treatment they can lead normal, 
productive lives. But without these foods and supplements, patients can 
become severely brain-damaged and hospitalized.
  Newborn screening has made a tremendous difference in the early 
diagnosis of metabolic disorders, but affordable and accessible 
treatment options remain out of reach for too many Americans. Medical 
foods and supplements which are necessary for treatment may not be 
covered by insurance policies and can be prohibitively expensive for 
many families. For those with a metabolic disorder, medical foods are 
critical in treatment, just as other conditions are treated with pills 
or injections. The sporadic insurance coverage of treatment has already 
been recognized as a problem. Over 30 States have enacted laws to 
enforce coverage of medical foods, but too many loopholes Thmain and 
federal legislation is necessary to ensure that these individuals 
receive what they need to stay well.
  The Medical Foods Equity Act follows the April 2009 recommendations 
of the U.S. Health and Human Services Secretary's Advisory Committee on 
Heritable Disorders in Newborns and Children. It will ensure coverage 
of medical foods and necessary supplements for individuals with 
disorders as recommended by the Advisory Committee and, most 
importantly, peace of mind for those families affected by inborn errors 
of metabolism.
  The lack of medical food coverage available to families has a 
significant impact on their lives. With the current situation of 
varying regulations between States and insurance providers, even 
families with coverage find themselves living in fear that a change in 
insurance provider will lead to reduced or nonexistent coverage. Too 
many Americans across the country are struggling to access the 
treatment they need for this type of disorder.
  Take the story of Donna from Wilmington, MA. Donna has two daughters 
with phenylketonuria and she speaks eloquently about the frustration 
she experienced after her employer switched insurance plans. Because 
medical foods are not listed along with other necessary medicines, 
Donna was forced to navigate a long list mostly made up of durable 
medical equipment providers unequipped to help her. Even when she 
finally found a pharmacy that could order the formula, she was told 
that they required an upfront payment because they were wary of not 
being reimbursed by insurance companies. In Donna's own words, she was 
dismayed at ``having that feeling like you're being held hostage every 
time a change may occur in your insurance or carrier.''
  Donna's story sharply illustrates the potential pitfalls even for 
those with insurance that offers some coverage. Too many families face 
a lack of coverage altogether. Take the case of Gwen of Waltham, 
Massachusetts. Her son Austen was 36 hours old when his heart stopped 
for over 20 minutes. Thankfully, he was stabilized but one doctor gave 
him only 6 months to live. A second opinion brought hope for Austen's 
family and a diagnosis of Glutaric Acidemia Type Two. Glutaric Acidemia 
Type Two is an inborn error of metabolism managed almost exclusively 
through diet. Because of the disorder, Austen cannot metabolize much 
fat or protein. He relies on supplements and specialty foods. 
MassHealth, Medicaid, covers most of the supplements but not the foods. 
Gwen pays for his food out of pocket, a significant strain on the 
family budget at a time when many families can least afford it. That 
strain is coupled with fears of job security and thoughts of what would 
happen if she could not pay for Austen's medical foods. No parent 
should have to see their child recover from a life-threatening trauma 
only to spend every day worrying about payment for their medical 
treatment--a treatment just as necessary as insulin for a diabetic or 
chemotherapy for a cancer patient.
  As newborn screening and medical advances continue to improve the 
ability of those born with an inborn error of metabolism to lead full, 
healthy lives, we must make sure that the necessary treatments are 
available. The Medical Foods Equity Act will close existing loopholes 
in coverage and provide the parity in coverage these families deserve. 
It is my hope that we can move forward with this bill in a bi-partisan 
manner. I ask all of my colleagues to support this legislation.

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