This guide is for anyone who takes care of a child or teen with cystic fibrosis (CF) and helps make decisions about treatment. You may have heard about using human growth hormone (HGH) for children with CF and want to know more about the research.
While HGH does not directly treat CF, researchers have wanted to know whether growing taller or gaining more weight by taking HGH could improve breathing or other aspects of health.
Many treatments and therapies for CF are not covered in this guide, including other treatments that help children with CF to gain weight. Also, this guide does not cover the use of HGH for adults with CF.
The information comes from a review of 79 clinical studies. Independent researchers, funded by the Agency for Healthcare Research and Quality (AHRQ), reviewed the evidence about using HGH for children with CF. The research questions and the results of the report were subject to expert input, peer review, and public comment.
CF can keep children from getting all the calories and nutrients they need from food. Because of this, many children with CF fall below the normal height and weight averages for their age.
Some research suggests that below-normal height and weight may increase children's risk for other problems related to CF and may keep them from living a longer life.
HGH is one of many hormones made by your "pituitary" (pronounced pi-TOO-it-air-ee) gland, which is located right under the brain. Hormones are chemical messengers that send signals to the cells in your body. Some messages tell your cells how to use food or make more cells. Growth hormone sends signals that tell the cells in the muscles, bones, and organs of the body to grow.
For use as a medicine, human growth hormone is made in a laboratory. This form is called "somatropin" (pronounced so-mah-TROW-pin). It is also called "recombinant human growth hormone" or rhGH.
Somatropin is given as a shot at home every day. It is approved by the United States Food and Drug Administration (FDA) for growth problems in children.
Children who had somatropin added to their other treatments for CF for 6 to 12 months had some small changes. These children:
The cost to you for somatropin depends on several things, including:
Insurance may not cover the cost of somatropin for children with CF. Human growth hormone treatment is expensive. The cost to buy enough somatropin to treat a typical adolescent could be tens of thousands of dollars each year.
If you are considering adding somatropin to the medicines used to treat your child's CF, we encourage you to talk to your child's doctor about the information in this guide.
The information in this guide comes from the report Effectiveness of Recombinant Human Growth Hormone (rhGH) in the Treatment of Patients With Cystic Fibrosis. It was produced by the University of Connecticut/Hartford Hospital Evidence-based Practice Center through funding by the Agency for Healthcare Research and Quality (AHRQ).
This summary guide was prepared by the John M. Eisenberg Center for Clinical Decisions and Communications Science at Baylor College of Medicine, Houston, TX. Parents and caregivers of children with cystic fibrosis and adults with cystic fibrosis helped develop this guide.