Transcription:
CATCH – BMC’s Resource for Gender Non-conforming Youth

Melanie Cole (Host): For transgender kids and their families, access to individualized treatment can be hard to find, and many are not sure where to turn. My guest is Dr. Mandy Coles. She is the Co-Director of CATCH, Boston Medical Center’s Child, and Adolescent Transgender Center for Health. Dr. Coles, how many kids, in general, identify as exploring gender during childhood or identify as transgender or gender nonconforming?

Dr. Mandy Coles (Guest): I think that most of the data out there on transgender individuals really underrepresents the number of children and adolescents who are out there who are being seen at CATCH and in other programs nationwide. Past estimates have put the numbers way under 1% -- somewhere like 3 to 6 out of 1,000, but in a recent study, almost 3% of high schoolers in Minnesota identified as transgender or gender nonconforming, so I think we have a ways to go on the data.

Melanie: What are some of the challenges that you see most often as they’re starting to tell people or let their families know or figure out that they really would like somebody to talk to and get help from? What are some of the challenges that you see?

Dr. Coles: The challenges that our patients face start well before we first see them in the clinic. They start at home; they start at school; they start when youth -- who do not identify with the gender to which they are born or confronted by societal norms around expected gender expression -- children who are told that they can or can’t wear certain clothes or play with certain toys, people who refuse to use an adolescents’ correct pronoun because “they, them, they’re” aren’t quote-unquote real, singular pronouns, young adults who won’t use a bathroom in public because they are worried about their safety. These are just a few examples of the challenges that transgender and gender-exploring youths can experience on a day-to-day basis.

Having families who are able to support their child -- to love them where they are at -- is probably the most important protective factor that children can have. When youth are not in a place to get that support from their family, or when families are not on the same page in terms of social transition or medical interventions, that can be really tough. One of the instances I have seen is with our patient, who I will call “Beth,” who was born male and had been living as a girl since she was ten years old. We started seeing Beth at 15 years-old, and due to parental concerns about gender stability, medication side-effects, and permanence of medical treatments, she had gone through a full male puberty without any intervention. Beth has an incredible amount of gender dysphoria and self-hate, some of which may have been prevented if she had received early gender-affirming medical care, such as hormone blockers.

Melanie: Tell us how CATCH came to be – The Child and Adolescent Transgender Center for Health, at Boston Medical Center?

Dr. Coles: CATCH formed out of patient need. I had had experience working with transgender patients prior to coming to BMC, so when I started seeing patients in the adolescent center in 2012, patients who had identified BMC as their medical home and who identified as transgender and gender non-conforming, it just made sense to me to provide their gender-affirming medical care as well as their primary care. I was really lucky that I had an amazing social worker, Erin Peterson, who was already part of the adolescent center and who is also invested in supporting this population. She and I were really able to work together to develop CATCH, which we now co-direct and officially launched in June of 2017.

CATCH now supports more than 60 patients and their families from the Boston Area, across Massachusetts, and into other New England states, and as far away as South America. We have an amazingly and incredibly diverse patient population, ranging across socioeconomic, racial, and cultural lines, as well as across the spectrum of gender identities and expression.

CATCH really seems to be catching on. We are adding new intake slots so that youths and their families do not need to wait any more than four to six weeks to get a new patient appointment with us. We’re lucky to have an amazing multidisciplinary team of medical and behavioral health providers, nursing, pharmacy, and administrative staff, and patient navigators. We want to make sure that youths and families get the support they need when they need it.

Melanie: When do you feel treatment should begin? If these children start with their pediatrician and their families, when do you think they should be referred to a center like CATCH, and how early can some of these treatments begin?

Dr. Coles: Melanie, this is a really great question, and the answer really differs based on the individual youths and the family. I can think of some patient stories that really illustrate this, moving from younger children whose family is maybe looking for guidance through adolescence, seeking blockers, or gender-affirming hormones.

I’d like to start with a patient who, for the purposes of this story, I will call Tina. We saw her a few months ago. Tina is an 8-year-old who is born male but clearly identified as a female from a very young age. Mom was sure that Tina said that she was Tina and a girl pretty much from the time that she could talk, and in mom’s words, “it just never ended.” “There was never a day when Tina doubts that she’s a girl—” in mom’s words. This family had really been incredibly amazing and supportive of their daughter, who had been able to live all of her life as a female.

With Tina and with her family, Erin and I really just had our initial intake visit with the family. We reviewed medical history, mental health, and gender history, and then followed this by a discussion around patient and family goals and gender-affirming care options. All of our individual treatment plans are based on individual patient and family goals, so we were really just able to cheerlead them, which is one of my favorite things to do – really just able to tell them that they’re doing a great job, to make sure that they were aware of community resources, things like playgroups for expansive gender youths, and parent support groups to help ensure that the school was gender competent and supportive, and to discuss next steps in gender-affirming medical care when Tina started going through puberty.

We had another patient, who I will call Dylan, an 11-year-old who came just at the start of puberty, who was born female. Dylan identified as agendered – or in their words, “I wasn’t a boy – I’m not a boy, I’m not a girl, I’m just me.” The family shared the teachers were still asking about gender, and still asking about pronouns, and that even the parents said that they slipped up on pronouns sometimes. The biggest issue for Dylan and their family, was bathroom use at school, as they were getting gender policed in the girls’ bathroom, and didn’t feel comfortable in the boys’ bathroom, which Dylan had described as “really gross.”

They were also noticing some changes in their body, which they were uncomfortable with – had told mom in their own words that they were getting boobs and was asking, “When can I cut them off?” After we went through our initial portion of the visit, we were able to offer reassurance and support to Dylan and to their family. We agreed to reach out to the school to help advocate for some gender-neutral bathroom options and to discuss gender training for the school teachers and staff. We talked about some medications that could be used to put a pause on puberty to buy some time for additional support to develop and to stop the wrong puberty from happening. These medications, which we call blockers, are completely reversible and safe, and really, they can be given as either injections or implants. I think at CATCH; we’re really lucky because we’re able to have them stocked in the clinic, so that day, Dylan was able to get their first blocker injection, which was great.

Dylan and their family came back a few months later, feeling more supported in school and ready to get the blocker implant, which can last for over a year, and which was successfully placed that day. I think that’s a great example of a success story for the patient.

For adolescents who are older and have already gone through the wrong puberty, there are different discussions and challenges. However, it all really comes back to what the patients’ goals are and how we can support them. In older teens, we may be discussing gender-affirming hormones, such as testosterone or estrogen, whose effects are partially reversible. But again, this depends on what the patients’ goals are and where the family is – if the family is involved.

We also continue to work on parent education and support for the family, especially when the youth and parents aren’t on the same page – like my patient Beth, whom I mentioned earlier in the discussion, whose parents had concerns about the care that she wanted to receive. It took some time with Beth to help her and her family get on the same page, but eventually, they were able to agree that she could start blockers, and a few months later, her parents consented to her starting gender-affirming medications with estrogen.

Other patients might come in older. They might come in at 18- or 19-years-old when they are able to provide consent for medical care on their own, and they might come in with really, very stable gender identities, knowing exactly what they want in terms of their treatment. With these patients, such as Chi, a 19-year-old transgender, male initially from the Middle East, we were able to do our full evaluation for medical and mental health, as well as gender history and addressing support systems. We were able to get him started on testosterone that day, and that made sense for him. Again, every patient and every family is different, and our job isn’t to tell patients what they need. Our job is to listen. Patients and families tell us what they need, and we try to help them get there.

Melanie: Speak about some of the other services, such as the transition to adult care because that is really something when some of these services change, so speak about what you offer.

Dr. Coles: We’re lucky at BMC, that we have the Center for Transgender Medicine and Surgery, so we really have a diverse group of providers across the medical center that care for transgender and gender-non-binary children, youth, and adults across all spaces. We will see patients in CATCH up to age 26 if that’s what they would like to do. We can also refer them to providers who do hormones or do hormones in primary care in either family medicine, or adult internal medicine, or endocrinology. We’re also connected to a behavioral health program if they need adult behavioral health services and would like to come to BMC and receive gender-competent care that way. And then we’re also connected to our surgical services for patients who are looking for – and are appropriate for gender-affirming surgery.

Melanie: What are some of the medical ills that transgender people face as they go from teens and into adulthood? I mean, it would seem to be that there are so many, even when you’re thinking about fertility and fertility perseveration or typical screenings that other people might go through.

Dr. Coles: I think that’s a good question, and I guess I would start by just saying the data out there clearly is that adults who are transgender and youths who are transgender historically struggle significantly more with issues around depression, anxiety, and self-harm. What we know is the earlier we are able to support patients, that the better the outcomes are, and that’s true for both mental health as well as physical health.

In terms of screenings, where we talk about routine medical screenings as if you have the parts, they need to be screened. For somebody who has a cervix, they need routine Pap smear screening. For somebody who has breasts or any breast tissue, they need routine screening for that. But in terms of long-term sequelae, that’s something we really think about on a very individual basis. In terms of fertility preservation, I think that’s another space where we talk about it with youth and adolescents when it’s appropriate, often before we’re starting blockers, or blockers and hormones, or just hormones. We also don’t really have a lot of good data on what those outcomes are for patients and families who decide not to pursue any fertility preservation, and that’s an area that I think is going to be really important to continue to sustain.

Melanie: What about the families, Dr. Coles? Are they involved in the support – and we’ve talked quite a bit about the mental health and sociological health aspects of transgender – how are the families involved?

Dr. Coles: Our job at CATCH, is really to provide support for patients and their families for patients basically in the situations that they are in. The most important component of youth or an adolescent doing well is really having that family support. If you can get support in the home that goes a long way. We always talk about the fact that – about how important that family support is.

That being said, all families are different, and family members are all in very different places. We try to work with families where they’re at, and we keep coming back to the mantra of, “This is your child, and you love your child, and we all want what’s best for your child, so let’s figure out how we can support them in doing that.”

And there are sometimes families are unsupportive, and then we really do our best to work with these families, too. We want to make sure that everyone is heard and that everyone is safe and that everyone is understood. We’ll start there and figure out where we need to go.

Melanie: Wrap it up for us. What else would you like listeners to know about CATCH and what you do for transgender individuals and their families -- whether it’s little legal advice or helping them with a name change, or surgery, or hormonal therapy, whatever it is -- wrap it up for us, what you want listeners to know.

Dr. Coles: At CATCH, our job is to support patients and families, and we spend a lot of time reviewing patient and family goals. As you mentioned, sometimes that just means being heard, sometimes that does mean helping with things like a name change or legal gender marker change, things around school and education, using correct names and pronouns. Sometimes that means finding local community groups, or therapy groups, or safe spaces to be in, and sometimes that means using medications that are partially reversible or fully reversible – medications like blockers, or testosterone, or estrogen, really to help the patient live in the body that is the correct body for them, and really to help them to be happy in their space and who they are and to help them not just survive, but thrive.

Melanie: Thank you so much, Dr. Coles, for being with us and all of the great work that you’re doing. This is Boston Med Talks with Boston Medical Center. For more information on CATCH, the Child and Adolescent Transgender Center for Health at Boston Medical Center, you can go to BMC.org, that’s BMC.org. This is Melanie Cole. Thanks so much, for tuning in.