The Power of Cohorts

Midwestern Morels: Writings from the Executive Director of LGBT-CC

On Wednesday, May 8th, Dr. Hilary Cass gave her first U.S. interview on NPR's "On Point" with Meghan Chakrabarti. Dr. Cass presented a balanced analysis of the evidence her team reviewed. In the UK, Dr. Cass has completed a number of interviews and recently video clips from one of those interviews made the rounds on X (Twitter).

It has been common to see reductive responses to the interviews by activists on X (Twitter). Erin Reed commented on the clip from the UK, "I don't know who needs to hear this but antidepressants and anti anxiety medicines do not cure gender dysphoria." Ari Drennen also commented and disclosed being given antidepressants when she first tried coming out.

After listening to Dr. Cass on NPR's On Point and watching the clip on Twitter, I think that Erin Reed and Ari Drennen have misunderstood what Dr. Cass was trying to say. I understand the confusion, as it highlights the importance of individualized medicine and the significant variations within different cohorts seeking care. These comments do not acknowledge the patient populations in pediatric gender centers, they are the comments of trans adults who have not worked in pediatric gender medicine.

What is a Cohort?

To understand the nuances of pediatric gender medicine, it's crucial to define what a cohort is. A cohort is a group of individuals who share a common characteristic, like age or a medical condition. Researchers often follow these groups over time to study how interventions affect them.

In pediatric gender medicine, there are 6 distinct cohorts, and each of these cohorts may have different medical approaches.

• Prepubertal Natal Girls

• Prepubertal Natal Boys

• Pubertal Natal Girls

• Pubertal Natal Boys

• Post Pubertal Natal Girls

• Post Pubertal Natal Boys

Within these 6 cohorts, we see two ways to categorize the patients by natal sex:

• Natal Girls

• Natal Boys

And three ways to categorize the patients by pubertal status:

• Prepubertal

• Pubertal

• Post Pubertal

Puberty typically onsets between 8-13 for natal girls and 9-14 for natal boys. An older study from South Africa had the mean age for first menstruation at age 12.7. In the United States, with the increasing rise of childhood obesity, we have seen the mean age becoming younger and younger.

Cohorts and Treatment Decisions in Pediatric Gender Medicine

My experience at the pediatric gender center engrained in me the practice of classifying patients into cohorts. While natal sex was usually straightforward, determining pubertal status was more complex.

Understanding pubertal status is essential. It dictates which treatment options were available. Criticism surrounding Dr. Cass's statement often misrepresents the appropriate treatments for different cohorts. The Dutch Protocol was developed to begin pubertal blockade at Tanner Stage 2, right at the very start of puberty. The most common presenting intake call in the center where I worked, involved parents of natal girls aged 13-16, and most of those patients were already at Tanner Stage 5. By 2022 the highest % of newly presenting patients were 16 year old natal girls.

The intake process involved a set series of assessing questions. After determining natal sex, age, preferred name and pronouns I asked parents these questions:

What type of service are you seeking?

What type of service is your child requesting?

It was very common for the parent to report that their adolescent natal girls were requesting (often the parents said that they were demanding) a puberty blocker. This request was incongruous. These were also often families that had been directly referred to the center after a visit with a pediatrician. This is where the AAP falls short, the pediatricians were not even having educational discussions with their patients and parents about puberty.

Its important to note here when I asked most parents what services they were seeking for their child the answer was: mental health care, therapy, or someone to help figure out, “if their child is really trans.”

I was then tasked with asking parents details that could indicate pubertal status. I would ask, “Has your child started menstruating?” Nearly universally the answer was not only yes, but that they had been menstruating for years at this point. I would ask, “Has your child experienced any chest growth?” (remember I followed the language rules). The parents would report that they had developed years ago.

For this cohort, puberty blockers are unnecessary, outrageously costly, and outside of the original Dutch Protocol. [Key note- this is a completely different discussion for natal boys]. One of the providers I worked with called a puberty blockers in a Tanner Stage 5 natal girl, “complete overkill.” Out of pocket cost for a blocker could easily reach $30,000.

But the puberty blocker had become the medical pot of gold in the hills, the parents believed that it was completely irreversible, the patients wanted it, and yet the vast majority of the cohort seeking this pathway found out that it had already closed. Rarely was anyone actually seeking for their 13-16 year old natal girl, who came out six months ago, was to be offered testosterone at the first visit. In the UK they were NOT routinely offering testosterone to 13 year olds like we were.

Other common treatments can effectly manage the concerns presented in this cohort. Birth control can effectively manage menstruation and even cease menstruation completely. Anti-depressants and anti-anxiety medications can be an effective treatment if the concerns are so challenging to warrant clinical interventions.

Basic quality care for these patients and their families would have started with a serious conversations with their pediatrician. They should have been educated to know that puberty had already occurred, educated on options for suppression of menstruation if that was part of the distress, and education if the child was already binding to ensure it was being done safely. Instead I was left to attempt to complete this education on the phone, in an already stressful call for parents. They were being referred to a center that most were often really nervous about considering, and they were really hoping that finally someone would slow down and try to help their child.

“There is nothing to block at this point, puberty has already happened,” was often my refrain. Parents were then left with an option to schedule with an endocrinologist to discuss cross sex hormones or with adolescent medicine to discuss birth control and mental health medications. At a certain point our adolescent medicine provider also jumped on board prescribing testosterone so I didn’t even have a non medicalized pathway to offer. The UK was not prescribing cross sex hormones in 13 year olds routinely like we were. They were holding the irreversible changes that cross sex hormones brings until at least the age of 16.

Dr. Cass acknowledges the distress experienced by this cohort, and states the obvious, they should have minimally been offered known treatment options for depression and anxiety. It's unclear what alternative solutions Erin or Ari propose in a cohort too old for puberty blockade and too young for cross sex hormones.

Dr. Cass understands that the Dutch Protocol, designed for early-onset gender dysphoria and puberty suppression at Tanner Stage 2, is not suitable for the most commonly presenting cohort. In the US, we simply dropped the age for cross sex hormones and irreversibly medicalized this cohort.

Two countries, two vastly different medical systems, and yet both found ways to provide profoundly piss poor damaging care for an entire cohort of kids. Three cheers for progress.

Who controls the words to describe the cohorts?

There was also a bit of finger pointing regarding the language used to describe the cohorts on Twitter after the NPR Interview.

The criticism states that, “MeghanWBUR violates journalistic norms that suggest referring to trans people with the gender and pronouns they prefer.” It is impossible to correctly identify the gender and pronouns for the entire cohort of adolescent girls who were referred to the Gender Identity Service (GIDS) in the UK.

To make a demand that a journalist should ignore the known baseline descriptors of the cohort and instead make assumptions about their changing personal gender identity is absurd. To view a group as a cohort is to intentionally create a group based on what they have in common, and in order for that grouping to make sense we actually have to directly name the commonality.

They are natal female.

They are adolescents.

First step is to name and then we can begin to discuss the best way we should have treated these kids. Kids who had challenging pasts, distress in the present, and futures that the adults should have protected.