Question:
Male, 22 years old, unknown subtype
I am again trying to get my son on an adult maintenance dose of growth hormone. He now has only Medicaid insurance. What testing should I expect them to require for prior authorization? Will this testing be appropriate for assessing PWS need for growth hormone administration? Does the brand name matter?
Nurse Lynn’s response:
You can ask your Medicaid plan if they have a “transition from child to adult growth hormone” policy. Sometimes this means they will not make you do a special test before approving the Growth Hormone.
Usually, insurance companies want adults to take a growth hormone stimulation test before they agree to pay for the medicine. But there are some exceptions. For example, if a person already has several hormone problems, like low thyroid, low testosterone, or low female hormones (FSH and LH), and has a low IGF-1 level, some plans will say that is enough proof that growth hormone is needed.
For people with PWS, these tests don’t always work well. That’s because PWS affects the hypothalamus, the part of the brain that controls hormone signals. The tests check how well the pituitary gland makes growth hormone, but they don’t test how well the hypothalamus sends the signal. So, the results can look “normal” even when the person really needs growth hormone.
If your request for growth hormone is denied, we can help by sending a letter of support to your doctor or insurance company. This letter would explain why growth hormone is important for people with PWS and show that your son is being safely monitored.
Do you have a question for Nurse Lynn? Submit your question here:
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.