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Most legislators, physicians, and hospital administrators
have very little understanding of the complex issue of expanded
newborn screening. Because of their lack of knowledge, they are
compelled to rely upon the state bureaucrats, who created the current
system and have a vested interest in maintaining the status quo,
for policy advice. The result is that most states aren't considering
expanding screening for fatty acid oxidation and other disorders,
even though the data to support this screening is significantly
greater than the information that led to the creation of state newborn
screening programs more than 35 years ago. Understanding this overview
will help you know what to expect so you won't become discouraged
if you choose to advocate for change.
You're most likely to be successful at expanding screening,
if you first go to the hospital that your child was born and use
your leverage with the neonatal and legal staff, to have them begin
offering supplemental newborn screening. My next step from there
would be to inform the Chairs of the Senate and House Health Care
Committees through your local state senator and representative of
the need for expanded newborn screening in your state. Don't let
your local senator or representative offer to file a bill on your
behalf to require expanded newborn screening, as a substitute for
a meeting with the Committee Chairs. In most cases, these bills
are the system's way of appeasing angry constituents. Invariably,
these bills die in committee. Instead, request a face-to-face meeting
with the Chairs of these committees (or at least their senior aides)
and tell them your story.
Your next stops should be the Commissioner of Public
Health in your state, the President of the state's Chapter of the
American Academy of Pediatrics, and then the science and medical
writer for your local newspaper. If you haven't done anything like
this before, you'll be surprised how accessible most of these people
are to you.
For all of these groups, you should provide them with
a copy of the US News and World Report article (found in our In
the News section), a one-page summary of the expanded newborn
screening issue and your recommendations for addressing it.
Background
- What is expanded newborn screening?
- How have FODs impacted your family and others
in your state (refer to the FOD Family List to enlist other families
to help you)
- The relationship between fatty acid oxidation disorders
and SIDS
Problem
Because newborn screening in your state does not include fatty acid
oxidation and other disorders, children are being harmed unnecessarily.
Recommendations
- The state's screening requirements should be expanded
immediately to include fatty acid oxidation and other disorders
detectable through expanded newborn screening.
- A panel of knowledgeable metabolic specialists
and other medical professionals should meet annually to review
and modify the state's mandatory newborn screening requirements.
- Hospitals and pediatricians should be encouraged
to obtain newborn screening services for state-mandated disorders
and other disorders indicated by current medical practice from
their choice of qualified clinical labs. This change will help
assure the continuous quality improvement and availability of
these services.
I realize that this is a long and intimidating list
of things to do, but how you ultimately choose to promote expanded
newborn screening in your state is totally up to you. If and when
you decide to do more, the actions that I've outlined are most likely
to lead to progressive changes in current screening practices in
your state, even if it takes a year or more to work through them.
Newborns are being harmed unnecessarily because of
the failures of the current newborn screening system in the US.
We want to see this system change so that more comprehensive screening
services are available to ALL newborns from a choice of qualified
labs.
John E. Sorrentino
Former Director of Systems and Business Development, Neo-Gen Screening
jsorrent@gateway.net
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