From Silicon Valley to Patient Advocacy: Navigating Transgender Health Equity With Molly Crowther
In this conversation with Molly Crowther, a board-certified independent patient advocate based in Berkeley, California, we trace Molly’s unconventional background in the software industry, where she worked on large systems, into the field of independent patient advocacy. Molly goes over her unique journey from the software industry, explaining her background in engineering and project management and how these unique experiences ultimately led her to advocacy. She also shares her experiences working in educational publishing, energy efficiency, business-to-business events, and software infrastructure.
We take a deep dive into Molly's advocacy work, which includes supporting transgender individuals in navigating the healthcare system. Molly discusses the challenges faced by transgender people when seeking gender-affirming care and the need for education and sensitivity training within the healthcare system. Molly also shares her vision for the future, emphasizing the potential for advocacy to be offered as an employee benefit by organizations. She believes that advocacy services can relieve the burden on employees, allowing them to focus on their work and overall well-being.
Molly's approach to advocacy is characterized by listening to her clients, understanding their unique needs and barriers, and helping them achieve their healthcare goals.
Transcript:
Host
Today on the patient advocacy now podcast, we're talking to Molly Crowther. Molly is a board certified independent patient advocate based in Berkeley, California. After a 12 year career in the software industry, Molly decided to use a background in large systems to help people navigate the healthcare system. Molly, thank you so much for being on the podcast. How are you doing today?
Molly Crowther
I'm doing great. It's sunny in Berkeley today and early on a Monday and
We're here and we're gonna do it.
Host
Yeah. You know, it's interesting. I, uh, we, we were able to chat a couple of minutes before we kind of turned on the cameras. Um, for me, I've, I've had the pleasure and the privilege of talking to so many advocates, you're the first one from the software space. I've talked to some people who work in billing and they dealt with software a lot. But, you know, when people think of advocates in their mind, a lot of them think of nurses or social workers.
The normal mental jump doesn't come from software. Tell me about your journey and how you kind of decided to come into this field.
Molly Crowther
Yeah, so I, you know, I originally got an engineering degree with a concentration in systems design back in 2009. And I moved to the Bay Area and just started immediately working with software teams doing sort of project management, product management, program management, that sort of thing.
which ends up kind of translating is helping software teams understand the work that they need to do and how to do it more effectively. And I worked in a bunch of different industries. So I started off actually in educational publishing and I worked on websites for health and nutrition textbooks mostly. So that was kind of an initial introduction to that kind of personal health space. And then I...
Host
Yeah, was it a space that was it? Did it fascinate you? Did you like it?
Molly Crowther
Yeah, that part of it was really interesting. One of my first kind of tasks as an intern actually was to read one of the personal health textbooks cover to cover in order to edit all of the test questions that were included with the textbook because they had been getting a lot of complaints that the questions in the back, like the questions in the back of the book didn't actually reflect.
Host
Please.
Molly Crowther
the content that was in the chapters.
Host
I think they did that a lot when I was in high school too, where I was like, where is this?
Molly Crowther
Yeah, it turns out that the people writing the test questions like don't get paid a whole lot and don't always do the best job. Yeah, exactly. So yeah, that was one of my first things and I also helped kind of launch a relatively unsuccessful product to help college students actually track kind of health and nutrition
Host
Wow, that's fun. That explains my chemistry grade.
Host
Yeah.
Molly Crowther
metrics using Twitter. This was like very early, very early on in kind of the use of Twitter as like a platform for tracking things.
Host
Mhm.
Host
Yeah, before they found their footing on what exactly they do.
Molly Crowther
Yeah, because this was back in like 2009, 2010. But that was interesting because college students taking personal health courses usually have to do some sort of behavior change project. And that was really interesting to me, like understanding kind of like the behavior change aspects behind health and how you encourage people to do that in sort of a technological way was an interesting product.
But I ended up moving away from that and actually worked in energy efficiency for about four years. And then I worked in business to business events like conferences and then did software infrastructure for about five years. And then that's kind of how I ended up transitioning into this was I went through an acquisition at the beginning of 2020.
And I went from like a 3000 person company to a 30,000 person company, which was a big mental shift. Yeah. And also having to kind of navigate that while doing the work from home was really difficult. So I was like, oh, I have all this professional development money I need to spend, because that's something you get from tech companies, like just money to learn things. And living in Berkeley, California, I
Host
Yeah.
Host
Yeah.
Molly Crowther
was interested in, oh, hey, what's UC Berkeley doing? What are some interesting classes I could take? And I discovered their program in healthcare advocacy and just saw a lot of parallels between what I was doing in the software space and doing similar things for people in healthcare. So helping them understand their goals for their care, communication barriers.
red tape that they need to jump through, kind of understanding that system and helping them navigate it in the same way that I was helping teams navigate software red tape and corporate red tape.
Host
So as far as an advocate, you kind of leaning on that infrastructure system mentality in terms of navigating insurance, medical procedures, red tape, bureaucracy, things like that. It's not, you're not in the same space necessarily, just to clarify for people who don't understand, you're not the advocate that goes to the hospital with the patient and talks directly to the doctor, right? That's a, it's a different field.
Molly Crowther
Yeah.
Molly Crowther
I have done that once and it was very difficult. You know, exactly.
Host
Well, you're not, you don't have that nursing background. You don't have that notion. So you come from a different space. So what does it look like? Let's just jump right into what it looks like if someone were to work with you so that they can understand the role you play as an advocate. So let's say, I'll give you an example. Let's say my father was, you know, just diagnosed with a chronic illness of some sort. Um, and he, he's, he has multiple medications, multiple doctors. And I come to you and I'm like, I'm confused.
Molly Crowther
Yeah.
Host
As to where to go, what to do. Maybe I have an insurance denial. What do you do from there?
Molly Crowther
Yeah, so one of the things that I do is I start with a relatively comprehensive introductory assessment. So I'll get somebody on the phone or on Zoom preferably for at least an hour just to talk about kind of everything that they're going through. And then kind of jump off from there. So it's similar to when I would, you know, go into a team context.
you know, with a software team and try to understand like, what are the actual issues you're dealing with and the barriers. So it's all about understanding sort of where that person wants to get to and what's preventing them from getting there. So in, in your sort of case, um, it's all about kind of understanding the family dynamics a little bit, like understanding what, what is your responsibility in this situation to your father, what do you want to provide?
yourself and then things that you're not sure about what to do with. So like denial, for example, understanding the process that tends to be a tiny bit different for different insurance companies. But like helping the person understand the process, walk them through, and also help provide that support, which sometimes just looks like making a phone call to the insurance company weekly to understand where we're at in the process.
because that can be very emotionally taxing, especially for family members, if they're trying to help try to help their family member get through that. When they kind of offload that to an advocate that can help provide a lot of peace of mind and help them get a lot of time back in their week, they...
Host
Well, not just that. It sounds like it sounds like you also make sure the ball stay up in the air and that things don't go like, is that, is that part of it? Cause I mean, I cannot tell you how many times even on a personal level, where if there's like a big health issue, you're like, Oh, I was supposed to get an MRI or I was supposed to ask for that. And like, I forget, it was just too much to do. Is that part of your job? Who is making sure things stay on track?
Molly Crowther
Yeah, for sure.
Molly Crowther
Yeah.
Yeah, sometimes especially like I encourage people to make, to make or share, or we can like kind of co-create like Google calendars for those sorts of things. Like if somebody has a surgery coming up and they have all these pre-op appointments or they have, you know, they need reminders to stop smoking for a certain period of time or like, okay, you can't have caffeine in this window or you can't have alcohol or like, this is your, you know, recovery time.
That's like one of the things I try to help people with is making sure to get that sort of thing on a calendar so they can help manage that. But yeah, it's a lot of kind of taking cognitive overload away from the people who are ill or their family members so that they can focus on getting better. Yeah.
Host
don't have that mental, yes, they don't have the mental anguish of trying to kind of wrap their arms around the whole problem on their own. They have, they have someone in their corner. It sounds like. And, and, um, do you find that you gravitate towards a specific demographic or you kind of work across the spectrum of young, old, or specific.
Molly Crowther
Yeah, exactly.
Host
diseases or issues. Do people come to you after you have a reputation for something? Just kind of curious how it, how it unfolds. Cause everybody's practice is so different, isn't it?
Molly Crowther
Yeah, I mean, I think at the moment I'm kind of building an issue for myself with transgender health care and helping transgender folks navigate the system just because there are, you know, complicated issues, you know, biases within the medical system.
Host
Yeah, I can't do that.
Molly Crowther
It's hard to access care sometimes. And as somebody who identifies as non-binary and trans myself, it can often be really helpful for people to just be able to talk to someone who they know can understand their experience and doesn't need to be educated on that part of it. Because that's a big thing is when you have some sort of.
Something that you're dealing with that you often have to educate other people about, that's also, like there's a lot of labor there that someone from like within your group who understands your experience can kind of help with.
Host
Really?
Host
Well, you know, as someone who, you know, doesn't identify and hasn't had that experience walking through life, um, can you tell me more about what those challenges are, what the barriers that the trans community might face and I'm fascinated. I mean, I'm always, I think anybody in this space always wants to help. And I like to include myself there too. And so kind of note, let's know, you know, for, for the people on the other side of the aisle who are, who are cis gender and, you know,
Molly Crowther
Yeah.
Host
and don't see that, what can we do to help? And what do you think systematically can be done to change things and make it easier for the trans community? Yeah.
Molly Crowther
Yeah, I mean, I think the overall thing that I see is that transgender, and this is like the Kafka-esque part of this, right? Like everyone hits weird things in the medical system that don't make sense.
Host
Sure.
Molly Crowther
Basically, just about every type of care that a transgender person is trying to access for gender-affirming reasons is a procedure or medication that was originally designed for cisgender people. Transgender people just want it for different reasons. And just about anything you can think of.
Molly Crowther
Any type of chest surgery, either breast augmentation or mastectomy, those are things that transgender people often want that were designed for other reasons, you know, for breast cancer, for plastic surgery reasons. You know, these are things that people can ask for and that they can receive when they're not transgender, but when you're transgender, you have to prove. Like you have to go through therapy, you have to.
Host
Sure.
Molly Crowther
prove that this is something that you need, that you're suffering, you have to like, I think people don't even don't understand like what the hoops are that people have to jump through, like just to access care that is available for cis people. So like one of one of the things that happens, for instance, is
you know, transmasculine people or non-binary people looking for, you know, a gender-affirming breast reduction, for example, are often told, you know, if this is something you want, you should probably just tell your doctor you have back pain or, or like hype up the back pain aspect of it because then they'll be like, oh, this is medically necessary and you can get cleared for surgery very easily versus if you want that same sort of thing.
for like gender affirmation, you often need to, you know, have a, they might require a year of therapy, they might require various letters explaining why this is something that you need. Like there are various things that you have to do to prove that it's medically necessary versus if you just say, oh, my back really hurts, I'd like to get a breast reduction.
Host
And so it sounds like there are some providers or even some advocates in the space and maybe not official advocates of people saying like, if you don't want the headache, this is like the loophole kind of circuitous way to get it done quickly. And you know, it's, that's, that's really interesting. And so obviously the, the goal on a system, on a, on a system level is to make those, the access to the care a lot easier.
Is that what you're trying to kind of get at? Yeah.
Molly Crowther
Yeah, yeah, especially. I think that that's how things have been trending for adults, at least.
Host
Mm-hmm.
Molly Crowther
it makes sense to remove more of the barriers to care because like there have been scientific studies on the regret, like quote unquote regret rates of getting gender affirming care for adults and the regret rates are extremely low. So they're much lower than, for example, spine surgery, knee surgery. You know, people get medical procedures all the time that they end up regretting. And it's a very, very low incidence.
Host
Sure.
Molly Crowther
when you look at gender affirming care, but people still throw up those barriers because they're afraid someone is gonna regret a procedure, but you don't make people go to therapy for a year to make sure that they're ready and able to get knee surgery. That's just not something that happens. And maybe doing that would reduce the amount of regret that people have around those sorts of reconstructive surgeries, but I don't know.
Host
Thank you.
Host
Yeah, that's interesting. So that's more of a systemic thing. Is there something on a personal level that can be done or, you know, to help, to help the community on a person to person basis other than lobbying and voting?
Molly Crowther
Yeah, I mean, I think just folks educating themselves around what transgender care is and isn't. I think the huge political thing in the past couple of years has been transgender care for children. We're seeing hundreds of bills coming through state legislatures trying to ban this sort of care. And most of it is completely unfounded. It goes against medical advice from all
mainstream medical communities. And a lot of the things that they're trying to ban are things that generally don't happen anyway. So minors generally aren't getting gender affirming surgeries. They're not getting hormone treatments until puberty. And when they do, they're getting puberty blockers that just block the transition through puberty. And as soon as you stop taking it, puberty starts again.
Host
See ya!
Host
Zoom.
Molly Crowther
Yeah, and it's very low, you know, low risk care. It gives families time to kind of understand what's going on with their kid and helps the kids have longer to make decisions and things like that. But all of these bands that are coming through are trying to prevent transgender people from existing. And that's kind of their underlying goal, which is pretty scary.
Host
He's fine.
Um, as an advocate, would you say that there are certain things that you push for or that you kind of reveal to that community that they might not be aware of?
Molly Crowther
Yeah, I mean, I think that especially with some of the things around like gender and name changes, I think people don't realize that, so if you legally change your name or gender, you can have a lot of issues when you try to kind of re-engage with the healthcare system. So I've had experiences with folks who like go through a legal name and gender change and then their insurance company
Host
Mmm.
Molly Crowther
doesn't understand what's going on, think they're a completely different person, and they're deductible and out of pocket maximums that they might have already reached for the year get completely reset. So that can be like a monetary thing that people have to be aware of. And I think a lot of people don't know that when they, you know, if they go through that legal change, that it can have implications on their healthcare as well. Especially also for folks like
Host
Interesting.
Molly Crowther
who are looking for procedures that are related to, quote unquote, the opposite gender. So if it says M on your chart and you need to get a hysterectomy or things that they don't necessarily expect a male to be looking for, you can very easily hit denials and insurance and other issues.
Host
Hmm?
Host
Do you, so I mean the, a couple of examples you, you kind of brought up there had to do with billing and insurance. Do you find any prejudicial issues that happen on the hospital level with nurses and doctors? What is that? What does that look like?
Molly Crowther
Yeah, yes, definitely. Well, one of the things that we have to remember, like this is another kind of systemic issue, is that historically there hasn't been a lot of training around either sensitivity or just transgender health care in general within the medical space. So, like a couple years ago, or like last year I took a medical terminology course, which was
I think it was at least six months long, very in depth, just learning about medical terminology and kind of the words of medicine. Transgender healthcare was not mentioned once in the textbook that we use, which is like a modern textbook. And this is the sort of course that someone's gonna take on a nursing career, on a medical assistant career, like any of the like kind of allied health professions.
Host
Thank you.
Molly Crowther
this is the sort of course you're gonna take. Wasn't mentioned once. There were all these like rare diseases, rare psychological things that were all, you know, talked about, but nothing about transgender care. So I think overall, the prejudice and the bias from many people is coming just from a place of ignorance where they're just not taught at all about this sort of care. And they're not taught that like,
Host
This is rare.
Molly Crowther
Oh, someone might come into your office and it might say F on their bracelet, but they might look like a man. Or the opposite can also happen or something in between. It's hard for you to know how to treat someone in a situation if you've never been taught what to do. If you don't know any trans people, if you don't know what sort of health care people are looking for, it can be tough for people.
Host
Ryan.
Host
Yeah, for sure. So, so I guess the, the place where it could start is in the education, right? The sensitivity training, things like that. That's interesting. I think that's a fair request, right? Uh, you're probably talking about an hour, you know, of like, Hey, do's and don'ts, kind of good, you know, smart guidelines. It's not a, it's not a exactly a full semester's worth of training. It's just, uh, kind of human decency.
Molly Crowther
Yeah.
Molly Crowther
Yeah, it's not like, not rocket science. Yeah.
Molly Crowther
Yeah.
Yeah, and even just like any time that you're learning about healthcare, there are perfect opportunities to talk about, you know, this is how it often is, this is how it might be for trans people. So if it's like, you know, we're talking about particular hormones, or we're talking about drugs or, you know, surgeries or injuries or basically anything, you know, it's important to just include all kinds of different people.
We were talking earlier a little bit about kind of racial bias within the medical system, and it's the same sort of thing. Like, one of the topics that comes up are around, you know, kidney function. Like, there's a scale of kidney function where basically, I guess historically, the tests have said that...
that black people have to be in much worse condition before you're gonna recognize that they have kidney issues. And that's not true. Like it's just like some historical thing that somebody came up with hundreds of years ago that's like still within the medical system. So that's my dog coming in. So. Okay.
Host
just mark it. Don't worry.
Molly Crowther
Just skip through a minute to make a noise.
Host
Yeah, yeah, by all means, by all means. I can't hear the band. I heard a little bit of the pause, but like just as your, your mic is pretty localized. We're okay. Um, I love dogs. So it's always makes me smile. Um, all right. I'll mark it back in. Um, as an advocate, I'm sure you talk to other advocates in the space. What would you like to kind of
Molly Crowther
Can you actually hear her like panting down there? The something, yeah.
Okay, good.
Molly Crowther
I'm going to go ahead and turn it off.
Host
tell other advocates or see advocates do more to better support their transgender clientele.
Molly Crowther
Yeah, so I've been doing some education in the space for other advocates. I'm actually going to the Health Advocate Summit in New Orleans in September, and I'm going to be speaking on sort of like a 101 on transgender health care for advocates.
Molly Crowther
the way that we should approach transgender clients is the same way that we approach any other clients, especially because anybody who's looking for an advocate is going to have some sort of barrier to accessing healthcare, just like the diversity of people that we meet, whether it's like, you know, what their first language was, what their economic status is, whether they're an immigrant.
whether, you know, what their racial background or ethnic background is, everyone is going to have barriers that we might not understand coming into the situation as an advocate. So like, as a white person who's college educated, like, I'm going to have a different experience than a lot of my clients will. But it's all about listening to them around what the barriers have been, what
Molly Crowther
What are their anxieties around the medical system? Things like that. I think any advocate is trained in how to do that. And it's just kind of a different community that we need to listen to and need to understand what their particular needs are.
Host
Yeah, sure.
Host
What's next for you? What's kind of the next phase in your career? Do you see what's coming?
Molly Crowther
So I think one of the things that I've started working on is providing advocacy as an employee benefit. I'm working with an organization right now who recently unionized and part of the union contract was having medical navigation or kind of insurance navigation as a benefit. And I think that's something that's gonna be interesting over the next couple of years as we see kind of more union
Host
Thanks.
Molly Crowther
oriented workplaces or more workplaces unionizing and them understanding that advocacy is something that they might want to include as an employee benefit. I think there's a big opportunity there for advocates.
Host
Yeah, I think that makes a lot of sense. How many times have we heard the stories of the insurance that the employees get being so confusing and difficult to understand that they go to HR and the HR just kind of shrugs and goes, I don't really know what to tell you, you know.
Molly Crowther
Yeah, HR.
Molly Crowther
Yeah, they aren't trained the same way that advocates are. And I think it's just like a win-win for employers, because if their employees don't have to spend all this brain space and potentially like working hours dealing with their healthcare or their family's healthcare, that can make them more productive for the company.
Host
Yeah, we talked to another advocate, Dr. Nancy Taylor. She was, she had some great stats. Um, anybody can listen to it, but she talked about how if they're, even if you're just a caretaker at home, just the mental anguish they've done some studies on is just the mental anguish of having a sick loved one at home you take care of. And having that dual role makes workers 11% less efficient. And so having.
Molly Crowther
Yeah.
Host
advocacy as a benefit so they can take that off their plate really is in the best interests of the company because then they don't have that slowing them down at work. I think it makes perfect sense to me. I mean, you know, it's like giving someone a car that they can use to get to and from work but then not teaching them how to drive. It's like, okay, you might figure it out but, you know, you can also crash the damn thing.
Molly Crowther
Yeah, for sure. Yeah, it's very easy to crash your medical care if you don't know what you're doing.
Host
Yeah, yeah, absolutely. I think we've, you know, if you, if you've been, um, blessed to have a healthy life, even those people have seen so many others go off the rails in the healthcare system. And, you know, there's lots of things about the system that is broken. And if you talk to doctors, they'll even admit to it. I mean, you're seeing doctors for 10 or 15 minutes. So, you know, there's only so much they can do and, and having an advocate to help guide it and just kind of keep it on.
Molly Crowther
Yeah.
Host
horse, which it sounds like you're right in the crosshairs of that because you kind of get involved on the, on the logistic level, you get involved on the bureaucratic level, uh, with insurance. And so you kind of prepare people to kind of go in, um, armed knowing with, you know, what, what they need to get done and how to get it.
Molly Crowther
Exactly. Yeah, it's all about like, making your care as effective as possible for the goals that you want to achieve.
Host
If someone were to want to work with you directly, what's a good way for them to reach out if they if they're specific? I mean, obviously, if they're trans, you might be a perfect match for them. But even if they heard something else about the way you approach things, and they're like, I just got to work with Molly, what's the best way to reach out?
Molly Crowther
Yeah, I encourage people to go to my website, which is Crowther.care. So my last name is C-R-O-W-T-H-E-R dot C-A-R-E. And you can make an appointment with me on there. I'm not really taking independent clients right now or like individual clients, but I'm happy to talk to folks and refer them to another advocate or kind of give them advice if it's...
Host
Thank you.
Molly Crowther
a relatively small thing that just takes a little bit of knowledge. So yeah.
Host
When you say you're not taking individuals, are you open to taking on corporate and kind of that stuff as well, or are you just at a full caseload at the moment?
Molly Crowther
Potentially, I'm at a pretty full caseload and I probably need to do some rebalancing at some point, but I'm basically happy to talk to anyone and help them get the help they need even if I don't have the time to provide it. Yeah.
Host
them in the right direction. Right, exactly. Okay. Well, Molly Crowther, I really thank you for your time. It's been eye opening for me and I'm sure others as well listening. Thank you again. And the website again to get in touch is Crowther, C-R-O-W-T-H-E-R dot care. So it's not a dot com, it's dot C-A-R-E, Crowther dot care. Thank you so much.
Molly Crowther
Yeah.
Molly Crowther
Thanks a lot.
Host
I just stopped the recording. I just want to make sure that your uploading is going
