Hey Robin,

Thanks for your message.  The family is in a very tight spot.
Unfortunately, I don't have any other recommendations.

J

-----Original Message-----
From: Communication for the Heartland Regional Genetics Group
[mailto:[log in to unmask]] On Behalf Of Troxell, Robin M.
Sent: Tuesday, April 07, 2009 11:11 AM
To: [log in to unmask]
Subject: GH in PWS coverage

I am trying to obtain coverage for GH for a one year old with PWS. He is
not failure to thrive because he is 100% G-tube fed due to oral
hypotonia.  He is also on a vent for about 22 hrs a day.  My initial try
was denied because he is neither obese nor minus 2 to 3 SD on the growth
curve.  They state the FDA only approves GH for kids with PWS who are
growth deficient.  I included the following references:
 

Carrel AL, Myers SE, Whitman BY, Allen DB.  Benefits of long-term GH
therapy in Prader-Willi syndrome: a 4-year study. Journal of Clinical
Endocrinology and Metabolism. 2002;87(4):1581-1585.

 

Haqq AM, Stadler DD, Jackson RH, Rosenfeld RG, Purnell JQ, LaFranchi SH.
Effects of growth hormone on pulmonary function, sleep quality,
behavior, cognition, growth velocity, body composition, and resting
energy expenditure in Prader-Willi syndrome.  Journal of Clinical
Endocrinology and Metabolism. 2003;88(5):2206-2212

 

Myers SE, Carrel AL, Whitman BY, Allen DB. Sustained benefit after 2
years of growth hormone on body composition, fat utilization, physical
strength and agility, and growth in Prader-Willi syndrome.  Journal of
Pediatrics. 2000;137(1):42-49.

 

There is one appeal left - any other thoughts?

Thanks,

Robin

************************************
Robin M. Troxell, MS, CGC
Genetic Counselor
University of Missouri Department of Child Health
Mercy St. John's Hospital (Springfield, MO)
(p) 417-820-9839
(f) 417-820-3720
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