Many parents bring their children to pediatric endocrinologists looking for human growth hormone (HGH) treatment for their short child. But is short stature really a disability that requires medical treatment? Which groups does HGH treatment elevate over others?
August 11, 2016
Last year I started working as a research assistant/study coordinator in the Division of Pediatric Endocrinology at Columbia University Medical Center (CUMC). I’ve seen children with hypothyroidism, diabetes, and brain tumors – endocrine disorders with diverse causes, treatments, and outcomes. However, it is hard for me not to notice that the majority of patients that we see are initially brought in because either their parents or pediatrician are concerned with their height.
There are a number of conditions that can cause a child to be short – Turner’s syndrome, growth hormone deficiency, or short stature homeobox-containing gene (SHOX) deficiency, among others. In the United States, the FDA has approved recombinant human growth hormone treatment for these conditions. Recombinant human growth hormone is a manufactured protein that is almost identical to naturally occurring human growth hormone. It stimulates tissue and linear growth, as well as nutrient metabolism, and increases growth in children who otherwise would have limited growth and/or shorter height due to genetic causes or chronic diseases.
In 2003, the FDA approved the use of growth hormone for the treatment of idiopathic short stature. Idiopathic short stature refers to short stature in the absence of any medically identifiable causes. It is a clinical description that describes any height more than 2.25 standard deviations (SD) below mean for age and gender, or any child growing below the first percentile for height and a normal growth hormone response after testing to rule out primary growth hormone deficiency. This definition shifts the focus from underlying biological processes and treats height itself as a criterion for treatment.
Many parents who bring in their children for height issues express concern that their child’s height will be a disability, especially later in their adult lives. They are concerned that their shorter children, particularly boys, will experience, or already experience, stigmatization, bullying, and lower self-esteem more often than relatively taller children. They frame their concern about their child’s height in terms of overall psychological wellbeing and how their child’s height will impact his or her opportunities later in life, whether in terms of personal relationships, career, or academics. In some ways, their fears are not unfounded – one study found that mothers held higher expectations for taller children; a different study found that people tend to expect taller people to have higher professional status than shorter people. It is understandable that a parent would only want what is best for their child, and thus seek out all options regarding potential optimization of final height. However, the approval and use of growth hormone treatment in children with normal growth hormone levels and no underlying disease has raised many questions for me during my time working in the Division of Pediatric Endocrinology.
One of the most striking patterns has been the gender skew in which children are brought in for evaluation and treatment of idiopathic short stature. The overwhelming majority have been male. Studies have shown that this is not due to there being more short boys than girls, but rather societal factors and pressure. It is common to hear parents say that their son is the same size as girls in his class or that his shorter height is a source of extreme psychological stress. Girls, on the other hand, are more likely to be called petite, adorable, or cute – in other words, their shorter stature is accepted, although they are infantilized in the process. There is also a difference in how girls and boys will be treated when they are older according to their heights, specifically in monetary ways. Some parents I’ve met in the clinic express concern with future opportunities (jobs, income) available to their children, especially if they wind up short. These parents have a point – men still earn more than women, and taller people, on average, tend to have higher socioeconomic status than shorter people. In addition, an increase in height of 4 to 5 inches is correlated with an increase in salary between 9 and 15 percent. Assuming these differences will continue to exist in the foreseeable future, growth hormone treatment bias only serves to further elevate men (literally and figuratively) over women.
There is also the concern about adverse side effects. Some risks include increased pressure on the brain, visual issues, development of insulin resistance, and pancreatitis. However, synthetic growth hormone has only been used since the 1980s, and it has only been used to treat idiopathic short stature since 2003. This means that long-term adverse effects are still unknown.
Growth hormone treatment is also prohibitively expensive. Daily shots can total up to $20,000 per year, and, depending on when the child begins treatment, can be taken for five to ten years. In the private practice where I work, initial consultations cost over $900 for a one-hour visit, and follow-up visits lasting 30 minutes cost over $600, typically occurring three to four times per year. They also need to have blood drawn regularly to monitor growth factors (which is used to determine the proper growth hormone dosing costing over $1,000 per visit. Different insurance companies have different policies regarding coverage, but parents who can afford it also have the option to pay directly out of pocket. [Since the publication of this article, the pricing schedule at CUMC has undergone some changes; the numbers listed above may not accurately reflect current prices. – Ed. 10/27/16]
There is an issue with the accessibility of endocrinologists (and thus growth hormone treatment) as well. Pediatric endocrinologists are mainly associated with large academic teaching hospitals, which create another barrier to care in addition to financial cost. I grew up in a small town in California in a county that is defined as medically underserved. I never heard of endocrinology or growth hormone treatment while growing up, and I never even knew it was an option that existed. None of my friends took growth hormone, and I knew of no classmate who took it either. However, in New York City, where there are a number of teaching hospitals within a 5-mile radius, many know someone who took growth hormone, and a number of the kids we treat in our clinic have friends who also take growth hormone treatment.
There also appears to be a difference in awareness of growth hormone therapy among people of different races and ethnicities, which could be due to language barriers, socioeconomic factors, cultural factors, or some combination of these. The majority of patients I’ve observed treated with growth hormone therapy appear to be white, even though studies have found that Asian and Hispanic children have a greater risk of having idiopathic short stature. A study done by Dr. Adda Grimberg at Chidlren’s Hospital of Philadelphia also found that socioeconomic factors “influence the medical management of short stature. In an ethnically diverse mid-sized U.S. city, parents seeking evaluation of their child’s stature by a pediatric endocrinologist were proportionally of higher income and education levels than the surrounding population.”
Finally, the physicians who I work with have a way of estimating a child’s final height using a “bone age.” If a child has a particularly low height prediction, typically 4’9” for girls and 5’3” for boys, growth hormone treatment will be considered. These are the minimum heights below which pediatric endocrinologists believe that a girl or a boy, respectively, would experience significant challenges existing in society. For a girl, a height below 4’9” would present physical challenges, such as needing blocks or a booster seat to drive a car, and for a boy, a height below 5’3” would pose significant psychosocial ramifications.
I don’t disagree that either of these challenges exist, but I wonder why the accepted mode of handling height is to medicalize it and treat children with growth hormone, rather than focus efforts on making it easier for shorter people to exist in the world with less stigmatization. Why is physically manipulating children’s bodies to better fit societal standards an accepted practice? In light of the possible adverse events and unknown long-term side effects, it is unclear if the risk of psychosocial stress related to being short truly outweighs the risk of taking growth hormone, particularly given that short stature is not a life-threatening disease. On the other hand, some parents view it as no different than cosmetic treatment, such as braces for fixing crooked teeth.
Should height be thought of as a social or medical disability? The creation of synthetic growth hormone and the FDA’s approval to use it to treat idiopathic short stature has allowed it to exist thus far within the latter category. Indeed, as Pedicelli et al writes, “A careful review of the diagnostic approach to short stature over the last 50 years would inevitably lead to the conclusion that rather than diagnosis dictating therapy, the availability of growth hormone dictated diagnosis.” Categorizing height as a strictly medical disability narrowly restricts a physician’s and a patient’s line of reasoning – short stature is a medical problem, and growth hormone is the solution to this problem. This framework does not allow a person to see height as a social issue or identity, or to consider any other possible courses of action. The medicalization of height lets people passively ignore how it connects to other issues such as race and socioeconomic status and how the structures through which growth hormone is developed and distributed heavily favor specific groups of people while implicitly excluding others.
As Andrew Solomon writes on physical and mental abnormalities in his book Far from the Tree, “Anomalous bodies are usually more frightening to people who witness them than to people who have them, yet parents rush to normalize physical exceptionalism. Labeling a child’s mind as diseased – whether with autism, intellectual disabilities, or transgenderism – may reflect the discomfort that mind gives parents more than any discomfort it causes their child. Much gets corrected that might better have been left alone.” A more expansive, holistic view of height would benefit not just children with idiopathic short stature, but everyone. There is a fine line between social identity/disability and medical disability, and sometimes it is easier to categorize something as the latter because this excuses us from truly grappling with the social nature of height and all of the complications that arise with it. However, for a fairer and more just society, it is important to reframe height (and possible treatment options) in terms of a social and identity issue rather than a medical one. The problem is in how we value the lives of individuals and the need to find a more nuanced understanding of what it means to be healthy.
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Hailey Roumimper is a west-to-east-coast transplant currently working as a research assistant in pediatric endocrinology in NYC. In her spare time she enjoys riding horses, obsessing over German Shepherds and the USWNT, running for as long as she can, and eating all the burritos she can find.