I'm not sure how much material has been published. Much of the world
experience comes from places where access to formulas for life is not an
issue. Phillip Lee in London runs a clinic for adults with IEMs--he
would probably be able to give you a sense of how many of his patients
with MMA, etc can get along on just a low-protein diet, and how many
need medical food. My guess is that only the urea-cycle people will be
able to get along on just low-protein diet. In the past 8 years I've
worked in Australia and Maryland, where access to medical foods was not
restricted at age 21. Our older patients were all on medical foods,
except for the PKU patients who didn't want to be (most did). In
Arkansas we have the opposite situation--people who want to be on the
PKU diet, but can't afford it (who can?) and don't have insurance. The
'safety net' doesn't really catch them--the result is high PHE levels
and poor brain functioning, which will be progressively harder to treat.
A cost-benefit analysis would be hard to do, and there will be a lot of
wobble in the figures, but it might be a useful exercise. Long-term
consequences will be very hard to figure--progressive renal damage in
MMA, osteopenia/porosis with chronic acidosis and poor intake, learning
problems, diminished executive/frontal lobe functioning, psychological
problems that have a biochemical basis, etc. It's been hard to figure
this for PKU, so I'm sure it will be more difficult for rarer disorders.
You might want to submit your question to/through the metab-l listserve.
If you don't have access or someone local who will do this for you, I'll
be happy to be an intermediary.
Steve
Stephen G. Kahler, MD
Professor, Division of Clinical Genetics
Department of Pediatrics
University of Arkansas for Medical Sciences
Email:[log in to unmask]
Office Phone 501-364-2966
Fax 501-364-1564
Pager (alphanumeric) 501-395-7865
Mail:Division of Clinical Genetics
Slot 512-22
Arkansas Children's Hospital
800 Marshall St.
Little Rock, AR 72202-3591
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-----Original Message-----
From: Communication for the Heartland Regional Genetics Group
[mailto:[log in to unmask]] On Behalf Of Troxell, Robin M.
Sent: Monday, April 24, 2006 12:11 PM
To: [log in to unmask]
Subject: FW: cost-benefit analysis of providing metabolic formula
From: Troxell, Robin M.
Sent: Mon 4/24/2006 10:03 AM
To: [log in to unmask]; Heartland, Chandra Hope (UMC-Student)
Subject: cost-benefit analysis of providing metabolic formula
Dear all -
Does anyone have a good article on the need for individuals on metabolic
formulas to stay on them for life, focusing not on PKU (there are many
articles on that). Specifically, the risk for MR/ health problems when
adults lose their insurance coverage and cannot afford the formula.
Thanks.
Robin
*********************************
Robin M. Troxell, MS, CGC
Genetic Counselor
University of Missouri Department of Child Health
Mercy St. John's Hospital
(p) 417-820-9839
(f) 417-820-3720
[log in to unmask]
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Confidentiality Notice: This e-mail message, including any attachments, is for the sole use of the intended recipient(s) and may contain confidential and privileged information. Any unauthorized review, use, disclosure or distribution is prohibited. If you are not the intended recipient, please contact the sender by reply e-mail and destroy all copies of the original message.
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