[Congressional Record Volume 157, Number 19 (Tuesday, February 8, 2011)]
[Senate]
[Pages S633-S634]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. KERRY (for himself and Mr. Casey):
  S. 311. 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 United States are diagnosed with metabolism disorders. For the rest 
of their lives they will need modified foods that do not have 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.
  Through bipartisan efforts, we have made great strides in improving 
how quickly babies with these disorders are diagnosed. Newborn 
screening has made a tremendous difference in the early diagnosis of 
metabolic disorders. However, 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 too 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 is a 
problem. In response, over 35 States have enacted laws to enforce 
coverage of medical foods. However, too many loopholes remain and 
federal legislation is necessary to ensure that these individuals 
receive what they need to stay well. It is time that we get treatment 
for those patients lost in insurance loopholes.
  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.

[[Page S634]]

  Take the story of Donna McGrath from Wilmington, Massachusetts. Donna 
has two daughters with phenylketonuria, PKU, 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.'' 
Medical treatment for inborn error of metabolism disorders is just as 
necessary as treatment for other conditions--like 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. That is why Senator Casey and I are introducing the Medical 
Foods Equity Act. Our legislation would require medically necessary 
foods and supplements to be included in the definition of essential 
health benefits for qualified health plans, covered by federal health 
programs, Medicare, Medicaid, CHIP, TRICARE, and by the private health 
insurance market, fully insured group health plans, self-insured group 
health plans, and non-group health plans. The legislation requires the 
Secretary of Health and Human Services to make a determination of 
minimum coverage levels for medically necessary foods and supplements 
for certain rare metabolic conditions.
  I would like to thank a number of organizations who have been 
integral to the development of the Medical Foods Equity Act and who 
have endorsed it today, including the National PKU Alliance, the Save 
Babies Through Screening Foundation, the National Organization for Rare 
Disorders, NORD, Genetic Alliance, and the American Dietetic 
Association.
  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 bipartisan 
manner. I ask all of my colleagues to support this important 
legislation.

                          ____________________