Women's Neurology: An IJMSC Insights Conversation With Esther Bui and Riley Bove

In preparation for a feature on the burgeoning interest in women’s neurology as a subspecialty, the International Journal of MS Care (IJMSC) spoke with Esther Bui, MD, FRCPC, and Riley Bove, MD, about their work on developing the women’s neurology curriculum of the American Academy of Neurology (AAN).

Esther Bui, MD. Photo courtesy of EstherBui.com.

Bui is a neurologist, clinician educator, and associate professor in the Division of Neurology in the Department of Medicine at the University of Toronto (UT) in Ontario, Canada. She specializes in women’s neurological health and directs the pregnancy and epilepsy clinic, offering comprehensive care for women with epilepsy through various life stages. Bui also established Canada’s first accredited women’s neurology fellowship at UT and has been instrumental in advancing education and research in women’s neurology on an international scale.

Riley Bove, MD. Image courtesy of SAGE Neurology.

Bove is a neurologist focused on the gender-, sex-, and hormone-related aspects of neurology, particularly in multiple sclerosis (MS). Her research is dedicated to understanding how hormones such as estrogen and testosterone regulate the course of MS and other neurological disorders, and she has published extensively on these topics. As the founding director of the Sex and Gender Enriched (SAGE) Neurology Program at the University of California, San Francisco, Bove is committed to integrating sex- and gender-informed approaches into clinical care, education, and research to enhance neurological health outcomes.

What follows is an edited transcript of their conversation.

IJMSC: Can you tell me a little bit about the genesis of the AAN women’s neurology curriculum?

Esther Bui, MD, FRCPC (EB): A lot of credit has to be given to [Mary] Angela O’Neal, who runs the Women’s Neurology Program at Harvard [University in Cambridge, Massachusetts]. There are 3 institutions that have a women’s neurology fellowship program: UT, Harvard, and the University of Pittsburgh [in Pennsylvania], led by Janet Waters. [Women’s neurology] had reached a critical threshold where training was being offered. We had all established our own individual curriculum. UT, for example, has an accredited women’s neurology fellowship, and each of the individual institutions had [one as well]. At the same time, there was a growing need among not just fellows but general neurologists, subspecialists, [and] our resident trainees to learn more. The 3 institutions looked at each other, and O’Neal made the decision, and I led the charge in terms of reaching out to [the AAN about] the curriculum.… We all had our own initiatives and drives and great local or national successes, but having the 3 institutions give this a global lens and translate what we were already doing locally to a broader scope was probably a 2-year project. This was like a 2-year overnight success, and Riley came on, as did Sarah LaHue, Divya Singhal, and Amy Hessler. A lot of people came [on] quickly because of the successes of their own programs.

IJMSC: Who reached out to them? Did you assemble a committee and then approach them? What was that process?

EB: I sent the original email [to the AAN], and it was well received. I submitted the proposal based on input from both [O’Neal] and Janet Waters…and they asked us to submit more. Within this core 3-[person] group, we incorporated a lot of the work that had already been done at the 3 centers and distilled it, and then [it] kept on growing beautifully and organically. Then [we added] expertise from the different subspecialties, including MS with Riley, and Amy Hessler is the women’s neurology colead [with] a lot of experience with general practice. It was an initial email to say, “We’re doing this great work. Would you be interested?” There was a very positive reception, and we worked very closely for 2 years…to refine what was needed because the fellowship standard curriculum wasn’t as full scope and general as [one for an] incoming PGY-1 [postgraduate year 1] in neurology. [This] allowed us to expand, so we included neuromuscular and…neurodegenerative and a call for greater engagement from people doing like-minded work.

Riley Bove, MD (RB): What’s funny is we had been approaching the AAN, even as far back as 2019, about doing these guidelines and had multiple emails with them, and things fell flat. Some of this is [that its] time has come. There were some guidelines in epilepsy but not guidelines for other neurologic conditions. It’s been a long road, and developing guidelines for the AAN is hard in general and not a linear process. Finally, the time has come; the field is ready for this. It’s an important bit to add that the field is finally [saying], “Oh yeah, of course we should have that.” [It’s] finally catching on. There was this wonderful push that Esther and Amy spearheaded, but the field was a lot more receptive.

The most powerful work to be done is to connect this. There’s powerful work in the individual silos, but that’s what curriculum and education do. It’s one of the most powerful connectors and levelers of what we do. ~Esther Bui, MD, FRCPC

EB: The most powerful work to be done is to connect this. There’s powerful work in the individual silos, but that’s what curriculum and education do. It’s one of the most powerful connectors and levelers of what we do. [The 4 focus areas are] the 4 largest established silos. I can speak for epilepsy because this is the silo that I live in. It’s very well established in terms of recognizing the risk of pregnancy and the teratogenicity of our medications. And MS has a very well-established silo as do stroke and headache, especially for women’s health. Even smaller, but quickly growing, silos [look] beyond cisgender women [into] sex and gender and the beautiful diversity that comes in understanding the full complexity of what sex and gender means. Those silos are growing. To build on the momentum…and be the superconnector that this work inherently entails, [we had] to connect the largest established silos, and that supercharged [everything] because it enables other silos to sprout…very quickly. Our next job—and this is where I’m excited to work with Riley in the SAGE program—is to look at the other smaller silos and build them up with the connecting pieces. [The 4 main areas of the curriculum] were [mostly] for established technical, scientific, clinical practice, [and] guideline-based silos in women’s health, and we easily found experts in each of those fields.

Esther and I may look at similar questions—preconception planning, pregnancy management, postpartum sexual and gender [minority individuals]—but the specific content of the expertise is very different for MS or NMO [neuromyelitis optica] vs epilepsy. When you’re thinking about curriculum development, you want to think about the process in general. ~Riley Bove, MD

RB: Those are [also] the most common neurological conditions affecting women of childbearing potential, so the knowledge base and research arose [because] there was a need for expertise.…They existed because there was a need. Another thing to point out is [that] Esther and I may look at similar questions—preconception planning, pregnancy management, postpartum sexual and gender [minority individuals]—but the specific content of the expertise is very different for MS or NMO [neuromyelitis optica] vs epilepsy. When you’re thinking about curriculum development, you want to think about…the process in general. There’s a need for preconception planning. There’s a need for careful postpartum management….[But] even though I’ve been doing women’s health for 25 years, I would not [treat] a patient [with epilepsy] in pregnancy. I would send them to Esther. Even though we have the same kind of framework, the way that you populate that framework with knowledge is very different. One of the things I like [in the curriculum is the] tables that point out the things that you might want to think about…and it differs according to the specific disease.

IJMSC: That was a comment from another neurologist that I talked to, that the rise of disease-modifying therapies for these areas has differentiated them more, complicated them more. Is that something that affected the development of the curriculum?

RB: I was just on a 3-hour call with MS neurologists, ob-gyns [obstetrician-gynecologists], fertility, all the different groups.… The field is changing all the time. There’s [been] an explosion of medications.… We have 17 MS therapies…and again, [we’re] abstracting out and saying [that] we need our neurologist and basic curriculum to have familiarity with basic reproductive transitions and basic questions and then fill it in. So where do you go if you need information about lactation? How do you think about placental transfer? These are things that are shared to some extent, and here’s the approach [in the AAN curriculum].… There is a need. This field [is] finally moving fast; [pharmaceutical companies are] finally putting money into it. Academics [are] finally interested in it. The government [is] finally [saying], “Oh, this is something we should pay attention to.” [There are] donors…. All this is finally coalescing, so the field can move faster. Teaching [the] broad framework and understanding how to fill in that framework is one of the places that this curriculum tried to home in on.

EB: Leading-edge work…has a crest and a trough in that. As people like Riley and other leaders in their subspecialties are pushing forward to understand the newest disease-modifying therapies, the other 99.9% are not even aware that fertility therapies are viable for patients with neurological disease.… Patients with epilepsy are being told that they shouldn’t pursue fertility therapy because fertility therapy may be harmful to to themselves or their epilepsy. Last week, a young woman told me that she struggled [with] wanting to have a baby because she was told by her neurologist that she would have a “deformed child.” That language, that messaging still needs to catch up to 2024…. Despite the absence of data, it doesn’t mean that what they want can’t come to fruition safely and with care. That’s probably where the education work is, in the trough, and Riley is at the peak. [We need] to bring everyone along with us.

IJMSC: How does that affect the people who are currently in practice, who are in the trough? What can happen at this point to educate those people already in the field?

RB: We have been writing guidelines on MS and women’s health for decades. We have so many expert consensus opinions, multidisciplinary [efforts], etc. We lecture at every international conference, every national conference. We have tables. Just look at the [AAN curriculum] tables. There’s a table that tells you what to do with each medication. We have so much information, and dissemination to general neurologists or people who don’t want to talk about women’s health is hard. One part is communication skills…but the other part is if they don’t want to go there, they’re just not going to know. We have guidelines in neurology. Angela edited a recent Neurology Continuum [issue] maybe 3 years ago. Autumn Klein did one a decade ago, a Neurology Continuum [issue with] articles for continuing education on each subspecialty. Information is available, and neurologists don’t access it. Training the next generation to be more conversant is critical. Another [way] I see people budge is when [pharmaceutical companies] get involved. All of a sudden, you’re invited to an advisory board about this issue. Another is patient demand. There are Facebook groups of patients who [say], “I have MS, I’m on [rituximab], and I’m breastfeeding, but I didn’t tell my doctor.” There’s patient demand, and patients know that they can demand this expertise and that it’s available to them if their neurologist won’t give it. That’s another [point] that is critical here: not settling. Patients are educated. They are consumers. They have access to social media. We’ve done some social media listening studies…and they may be more effective at nudging [our] colleagues than we may be.

EB: I agree, and it’s embodied by the shared decision model, which is where we’re moving. It’s no longer patient-centered care or physician-informed care because there’s an entity here that Riley has alluded to, which is data. It’s big data, it’s social media data, it’s influencing data. I tried for 2 years to convince our 14-year-old to wear sunscreen, and [all] it took [was an influencer on Instagram]…. There is real power, and if that power is directed in the right way, in a safe space, and all the players are there.... We’re doing the study now, creating a shared decision model platform, and hopefully integrating AI [artificial intelligence]. The patient is there at the table, the physician is there—an engaged physician—and the data are there. If that platform can catalyze the shared decision model for all women’s neurology as an example, that’s important. I’m totally aligned with what Riley has said.

IJMSC: [Regarding]the idea that women’s health has to be divided into childbearing, after childbearing, before childbearing—using childbearing as the organizing language around it—is that something that you thought about? Were there other ways to organize a woman’s life span besides [childbearing] that you considered? I’m interested in that centering.

EB: I love how you picked up on that. This is a blueprint, but it’s not the [final] architectural design. In the [analogy] of the silos again, you want to build on what is the strongest. On the flip side, it’s also the most urgent need. Pregnancy is only 9 months, and automatically, there’s a lot of work as well as the trauma that comes with pregnancy that concurs with a chronic neurological illness, but we only have 9 months. In fact, many times, women become pregnant and are not aware, so probably less than 9 months. Many times, the decisions made in those 9 months are very anxiety provoking.… This is the most resource- and attention-intensive focus in a patient’s life. But I want to quote someone else who said, “Not every woman goes through pregnancy, but every single woman goes through menopause.” I’m energized because 5 years from now, I want this document to be very different. I want pregnancy to be only one of other equally important and hopefully equally studied stages. Menopause is another example.

I’m energized because 5 years from now, I want this document to be very different. I want pregnancy to be only one of other equally important and hopefully equally studied stages. Menopause is another example. ~Esther Bui, MD, FRCPC

IJMSC: You touched a little on the future of this curriculum and this area as a specialty focus. What next steps and what future directions are most important to both of you with this curriculum in particular or with women’s neurology in general?

EB: I’m always looking at the future. Inherently, my mindset is disruptive, and the future is where disruption, innovation, and change happen. The future is just broadening this. Another quote that really resonated with me is, “I don’t want to be part of your revolution if I can’t dance.” This is what is so exciting about this work. Although we started this [with] a cisgender woman focus, the concept of being a woman is beyond being a cisgender woman. That’s an exciting future direction: engaging and welcoming those who are interested in working in this world beyond the cisgender woman lens. It’s about sex and gender. As much as women have been disadvantaged due to lack of research, lack of focus, [and] lack of integration and consideration, frankly, there are other subsets of our work [with minority groups] and equity work that have had even more egregious things happen in frank exclusion or omission in research. That’s where I’d love to develop and see this curriculum grow: to invite people in their own established silos in sex and gender work to build together synergistically. The future is not just what we’ve done but is a stepping stone for others to build [upon] with us in sex and gender work.

Reflecting a little on what success [might] mean with this curriculum, how do you measure success?… I’ll measure success when any neurology trainee can articulate these concepts, not just the ones who are interested in the topic. I think about how a guideline informs education and practice…[and] we have [some] signaling that the times are shifting rapidly. ~Riley Bove, MD

RB: Reflecting a little on what success [might] mean with this curriculum, how do you measure success?… I’ll measure success when any neurology trainee can articulate these concepts, not just the ones who are interested in the topic. I think about how a guideline informs education and practice…[and] we have [some] signaling that the times are shifting rapidly. We have a sex and gender program that just received NIH [National Institutes of Health] funding, and we had submitted it to the Office of Research on Women’s Health. NINDS [National Institute of Neurological Disorders and Stroke] wasn’t even signed up for this RFA [request for applications], but they decided to pick it up because the people who invest realize that maybe this is something that they should be supporting for brain health.… We’ve thought a lot about how we measure success for these kinds of things: the fluency of graduates in articulating these [concepts], certainly expansion [of the curriculum]. I love what Esther said about adding other reproductive transitions. Menopause is something that I do a lot of research on and care a lot about. I love that idea of things expanding in those directions. We had to walk this line between framework and disease-specific details, and these guidelines are a framework. If some of those details can be fleshed out more and [appear] in future iterations of the guidelines, that would be great.

An example of a general [issue] would be MRI and contrast, [which] applies to all neurologic diseases. But our [MS] silo has been proactive, like the epilepsy silo. We have a lot of fine detail for MS-specific medications. In which situations is it better to continue MS therapies during pregnancy? How do we prevent postpartum relapses? Other neurologic diseases have a high risk of rehospitalization [in the] postpartum [setting] or disease worsening post menopause. There’s [all] the nitty-gritty of management and overarching themes. And how do we get more? How do we get general neurologists to do this?

EB: We would love to engage program directors or education leaders across North America to help them do a quick assessment of their own programs. I’m more than happy to be the liaison for that. What [is the] extent of their [current] curriculum? [And there is the] patient voice, because without a story, [they are] still data. That’s one of the most transformative ways to transmit our data. To Riley’s point [that] we’ve been doing this for decades, sometimes it’s a powerful story that can open people’s eyes to a patient-led movement [that says], “This has value. This is my life and my health, and this is an essential part of neurological care.”

Transcript edited for clarity. Look for the women's neurology feature to be published later in 2024.