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Positive Gene Podcast: Hereditary Cancer Risk Through an LGBTQ+ Lens with Genetic Counselor Maddie Williamson | Season 3 Ep #6

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Welcome to the Positive Gene Podcast. This is your host, Sarah Kavanaugh. And today we are tackling an essential but often overlooked conversation. What it means to navigate hereditary cancer risk as a member of the LGBTQ plus community. Our guest, Maddie Williamson, brings both professional expertise and lived experience to this discussion. Maddie is a board certified genetic counselor and a BRCA1 carrier who currently works for Indiana University, returning research genetic test results to patients with Parkinson's. In addition to her clinical work, she volunteers with force, helping lead LGBTQIA plus peer support groups and advocating for equitable inclusive care.


In this episode, we explore the unique barriers LGBTQ plus individuals face from accessing affirming providers to dealing with insurance gaps to navigating complex family dynamics that can complicate genetic testing and Cancer risk management. We'll also talk about what meaningful support looks like from providers, allies, and advocacy organizations and the community itself, and what it can take to build a more compassionate and inclusive future for hereditary cancer care. So let's get started. Welcome to the show, Maddie.


Maddie (02:16)

Yeah, thanks for having me.


Sara Kavanaugh (02:17)

I'm excited for this conversation. So thanks for being here. All right. So to start, can you share your story? Like what brought you into the world of genetic testing and what it has meant to navigate this space as you really bring a unique perspective to this ⁓ as a BRCA1 carrier and a genetic counselor that that in itself is significant, but also as a member of the LGBTQ plus community. So can you share your story?


Maddie Williamson (02:45)

Yeah, yeah. And I just want to kind of open up the conversation by just acknowledging, you know, my privilege. As you said, I am a genetic counselor, a BRCA1 carrier, and I am a member of the queer community, but I'm also white, cisgendered, able-bodied, in a straight presenting relationship. So I'm here today with kind of the goal of bringing awareness to the community, just owning that my experiences might not be completely representative.


But to answer your question, so I first became interested in genetic counseling. I think like many genetic counselors as a career where I could sort of combine my interest in science and sort of the detective work that you get to do as a genetic counselor with that ability to really have those conversations and make a difference for patients, which I think, like I said, attracts a lot of GCs to the career.


And then, like you said, I currently work in neurology. That has always sort of been my specialty interest and my path into genetic counseling. As for my experience with hereditary cancer, obviously in my genetic counseling training, I learned more about hereditary cancer and it kind of got me thinking about my own family history of cancer. And then after I graduated, when I was in my first position, you know, had more time to think about that sort of thing and decided to go ahead and get tested just based on my family history and lo and behold, tested positive, found out I was a BRCA1 carrier and pretty immediately felt like I could be really helpful as, you know, a volunteer in these hereditary cancer spaces just with my experience. 


Shortly after I got my results, started volunteering with FORCE as a research advocate. And then as I was sort of getting into that role, FORCE was interested in starting up an LGBTQ specific support group. And they had some people interested in facilitating, but all those support groups that FORCE runs ⁓ have to have a genetic counselor to help facilitate as well to be there to answer some of those questions.  So they were looking for someone who could kind of fill that role. So I ⁓ volunteered ⁓ as someone to help sort of start up that support group for FORCE.


Sara Kavanaugh (05:00)

That's great. And if you are newer to the show and just joining, we keep mentioning FORCE. And if you're not familiar with FORCE, I highly recommend you go out and find more information about them at facingourrisk.org. Maddie and I are both volunteers, as she mentioned, it is a nonprofit that supports people facing hereditary cancer and cancer risks. So we'll make sure we put access to that information in the show notes. 


So let's just dive right into why it is so important to create space for LGBTQ plus voices in hereditary cancer conversations. What is missing from our mainstream narrative?


Maddie Williamson (05:40)

Yeah, mean, obviously, I think it's essential. These communities, I mean, they often face barriers that would be relatable to most people affected by hereditary cancer, you know, in terms of like finding providers that work with you and listen to you and having to make decisions between treatment options, you know, all that is very relatable. But I think in this community, those experiences are sort of compounded by the unique challenges and that's what's often left out of the narrative. 


We know that hereditary cancer is not just a biological issue. It is tied to access to care. It becomes part of your identity and it's really influenced by your trust in the healthcare system, which, you know, LGBTQ individuals historically have had reasons to not have as strong of a trust in that system.

 I think, you know, again, what's kind of missing from the narrative is that understanding that hereditary cancer risk management, things like screening, surgery, even like family history assessments, it's just, it's not one size fits all. And I think, you know, as a provider myself, it is hard being a provider. You often don't have as much time as you would like with patients. you are dealing with a lot of different demands. So as much as you can streamline in a clinic is always helpful. But I think it's important to center these unique experiences. 

And our communities have been historically underrepresented in research.  Meaning that we might not even have the data to understand the specific risks or outcomes that we should be thinking about.


Sara Kavanaugh (07:21)

Well, then that's a good time to ask… you mentioned a few top level concerns, but what are some of the unique barriers that LGBTQ plus individuals would face when seeking care for hereditary cancer risk? So they get a positive genetic testing result for an ATM, PALB2, BRCA, Lynch, whatever.  What are some of the unique barriers, you know, that they're going to face through that journey?


Maddie Williamson (07:52)

Yeah, great question. So I think in the support meetings I've had and the conversations I've been able to listen to, I think for all LGBTQ individuals, they have some of those unique barriers, but especially trans and non-binary people and people who are just visibly part of the community, who are just they're not able to enter a space and not be outed, I would say. You're just going to have that fear of either discrimination, like outright discrimination from providers who might make comments, discount your concerns, what have you.


Even providers who mean well can still just have a lack of understanding, or they can be apprehensive about talking to someone who they don't feel like they understand. So they might refrain from asking something or from digging into a topic because they don't want to offend someone. And that can lead to gaps in care as well. 

So I think just like I talked about, it's harder to find those providers that are safe and that are either willing to be educated or even better, know, willing to educate themselves so that it's not on the onus of the patient to do all of the educating when you're trying to deal with all these other things. And then also, you know, thinking mainly about trans and non-binary folks, they are already sort of living in a medicalized body, as my friend Will has kind of introduced me to that concept. In just, you you are thinking about your body in terms of parts and hormones and things like that. And I think that someone who's dealing with hereditary cancer can also sort of relate to that in that, you know, you have these organs that you have to screen and just thinking about your body as like almost a medical specimen or like a project sometimes. So just bringing in those other layers, especially for people who might have a cancer risk in an organ that causes them gender dysphoria. 


So a non-binary person or a trans man is born with ovaries if they have risk of ovarian cancer that still needs to be addressed. But it can be hard to have to go into a women's hospital, a women's clinic, sit in a pink waiting room, and, you know, be in a room with all other cis women. You know, just putting yourself in that position, it would be hard to make yourself want to go and get that care. So just those are some of the some of the barriers that I think just come off right off the bat.


Sara Kavanaugh (10:45)

Yeah, that's extremely helpful. And I'd encourage listeners to stick around to the end of this episode, because we will be giving recommendations to providers, to allies and to individuals who are, you know, facing this challenge of dealing with living with hereditary cancer risk in this community. 


Let's go on to another example where we kind of fall short as a country. I guess you could say we fall short, you know, in the medical space and in the insurance space. We can see how insurance coverage will fall short for these individuals, especially when it comes to things like - It's all over the news as this episode is being recorded - but talking about gender affirming surgery, in addition to risk reducing care, and then how coverage is tied to binary expectations. It's definitely not a well understood, just in general terms, right? But now add to the complexity of insurance companies navigating this. Even if they want, even if they are from the perspective that they want to support this, is there enough work and research that's being done to help understand the insurance implications for this community? So fill me in on this. This is really a complex issue.


Maddie Williamson (12:03)

Yeah, complex is the right word. And again, from the conversations that we've had in the group, and again, insurance is complex for anyone. And I feel like, I feel like there are just so, you don't know what you're getting into until you actually try to get something approved. And then it's almost like your insurance company is like, you can have coverage, but only if you answer my three riddles and things like that. And so I've heard stories of, I have GC friends who work in hereditary cancer and they've met before with trans people who have a family history of a hereditary cancer gene and they are actually hoping to be positive so that they can have their basically top surgery covered so that insurance will kick in and cover a mastectomy for cancer prevention reasons when they wouldn't cover it for gender affirming reasons. things like that. Yeah, things like even people who aren't trans or non-binary, I think one of the things that might be more common, I think it's getting more common in just the general population, but has always been common in LGBTQ spaces is like the concept of going flat and not having breast reconstruction after a mastectomy. 


First of all, just finding providers who are comfortable, you know, doing those types of like aesthetic flat closures. And that is tough. And then I was meeting with one of our support group members that said they had everything squared away as far as they were gonna get an aesthetic flat closure. They felt really good about that. And one of their providers asked, you know, do you want nipple reconstruction? And they thought, you know, why wouldn't I want nipple reconstruction? And then it turned out after the surgery was done, insurance was not covering the nipple reconstruction part because they only covered it when someone was also having breast reconstruction. And it's just like, that's such a weird distinction to make. So they actually had to code it as that the nipple reconstruction was for gender affirming reasons, even though we all have nipples.


So I think it's just, you know, it's so hard to understand policies. And like you said, I'm sure there are companies that do want to do the right thing and want to be supportive. And I think it's just, it's just understanding all these nuances and, you know, being willing to like take that into account. But I do feel like, you know, queer and trans folks have to get really good at understanding their policies and knowing when to fight back.


Sara Kavanaugh (15:04)

What are ways that people can navigate the insurance questions? I think we have, I think FORCE even has resources on their website for helping people navigate the, you know, I think Medicaid and different resources like that.  I don't know, is there anything that you can speak to that would say, all right, here are some tactics in managing that because I think even for for myself, getting ahold of the insurance company and asking what's covered, it's a little bit of a gamble. And I do work with my providers and I do question what is covered each time.


And I guess I can say at least, you know, top level things that people can do would be related to have your providers you know, check for you what is covered before you go into that process. They'll, they'll always do that. They'll help you just have to be really clear on what is specifically you're asking for. 


And if you if needed is going to the insurance company and confirming that, hey, I have this mutation, what is covered from a screening perspective, because even if your provider is doing that whole technical system with the insurance companies and providers talking to each other, they can get it wrong. And that's happened to me personally as well. So always double checking that work. What are other things do you think that people can do to help navigate that part of the process? I know it sounds very transactional, but it's really important, especially if you're on a limited budget, right? This it can be very expensive to keep up year after year.


Maddie Williamson (16:39)

Yeah, you know, we all sort of struggle with the same things. I'm not an insurance guru. I wish I was. I could probably make a business out of that. But I think just as much as you can like have your policy in hand and because if something gets denied and you are trying to make an appeal, that is, what the insurance company is going to send you is where it spells out in your policy what is and is not covered. So as much of checking as you can do on the front end is going to save you some strife after the fact when now you're going into appeals. 


And then also being aware of the laws in your state. Some states will have laws on the books that no matter what insurance you have, procedures or preventative screenings have to be covered. So I think it's like you said, asking your providers because they might have more experience because they do more of those procedures than you have experience with, but you may have more experience with your own insurance company and things like that.   It is legwork, it is advocating for yourself, but I think the best thing you can do is just try to be aware of what your policy actually says and then what actually is and is not covered.


Sara Kavanaugh (18:08)

Yeah, great. Thank you for that.

Let's shift gears to some more current events. Let's just put it that way. How does the current political climate effect access and safety for patients in this community? Like what are most people concerned about right now?


Maddie Williamson (18:26)

Yeah, yeah. I  mean, things are lots of things are happening. I feel like there's there's more news every day, more news than I ever wanted to hear. For me, you know, speaking personally and again, speaking from my place of privilege.  I think in our day to day, it's it's natural to surround yourself with like minded people, you know, people that you talk to in person, people that you talk to online. And so you sort of get this idea of like, yeah, most people agree with me and, you know, I feel that everybody thinks this way. I think I felt a little embarrassed, honestly, to be caught so off guard. And it sort of shattered, I think, my illusion of, you know, most people think one way.


And most people are gonna support things that are for the good of others. And so I had to do, I think, some soul searching after that.


I think for one, it's that fear that people who are homophobic or transphobic are going to feel more emboldened in the current political climate and just being feel like they are supported by the messaging that is coming from our government or our leaders, which I think definitely contributes to the fear that queer and trans people are feeling right now.


It just exacerbates the issues that we've been discussing and can make individuals less willing to seek care, to even be out. So it is certainly just compounding all other issues that the community is facing. But my worry and my fear is that it is gonna cause people to not seek care because that fear is higher and safety is less right now, I think.

Sara Kavanaugh (20:25)

Yeah, there’s a part of me that just wants to jump right into, but what can they do? Like how, how, how can we cope through that process, right? From the discomfort of walking into a doctor's office to having a tough conversation with a genetic counselor. Like what are, what are individuals to do in this instance? Like if you had to encounter a patient, and you do every day, but if you were encountering a patient in this situation, what, I guess, comfort would you provide to them as a provider? And it's okay. Like, you know, you're a safe space. And a lot of times they're not going to walk into a safe space or a space where maybe it's not well understood. What advice would you give them right now?


Maddie Williamson (21:03)

Yeah, I think, you know, overall advice to providers is just to keep doing the work. If you have a desire to be an ally, you also have to be an advocate. So that means examining your own biases and try to recognize what assumptions are you making about your patients, even if, you know, it's not, it's coming from a good place, you know, what are you assuming and what is that causing you to not talk about with people or to leave out or to treat someone with kid gloves…and how are your own assumptions and biases, how are they potentially hurting people even if you want to be supportive?


I think considering if you want to be seen as a safe space, actually becoming a safe space.  Considering how inclusive or alienating are your clinic spaces, your waiting rooms, even the forms that people fill out. That's a pretty simple thing to change.

Is your language inclusive? Does it say, check off your sex, your gender, man, woman, prefer not to say? Just things like that. I don't prefer not to say, I'm just not a man or a woman, you know, just thinking about those sorts of things. And that goes to your documentation. Patients have access to most of their documentation way more than they used to. If they're like me, I read all my notes. I want to know exactly what my providers are putting in there and potentially saying about me. So don't, you know, write anything down or think, you know, critically about what you're writing down and how it would be perceived, even when it comes down to things like the diagnosis codes that go in there and how those could be perceived, because some of those aren't always written in the most effective way, and there can just be some miscommunication. So I guess that's how I would sum it up. If you want to be seen as a safe person, just do the work and think about how you can actively do that for people.


Sara Kavanaugh (23:15)

And I think that brings together the idea that, you know, in posing that initial question that we just had, or like, what are people concerned about right now? Like, one thing that providers can do in helping to mitigate those concerns is to, just as you just said, be inclusive, if you can. I think there's some barriers that even providers are facing with rollbacks in DEI.  And what does that look like for some organizations? And I know that's a tough space that, you know, healthcare and hospital systems are facing right now.


Maddie Williamson (23:49)

Yeah, I mean, I think it's a scary time, but it goes all the way to the top. You know, there are some institutions that are resisting that and standing up for people. And I know, you know, if you're employed, you can't always influence what your institution says. So I think just looking for ways that you can make a difference that are within your power at this point.


Sara Kavanaugh (24:16)

Great advice. All right, let's talk about genetic testing and family history. So how one of the challenges that this community might face would be some complex family dynamics, potential estrangement, maybe because of the perceptions that the individual is encountering, you know, how do these issues impact access to genetic testing or the ability to trace medical history?


Maddie Williamson (24:48)

Yeah, yeah. mean, as a genetic counselor, I never feel like I am just dealing with a patient. I always am like looking at a family holistically because it can just give you so much information. Like I said, working in genetics is like being a detective and you're putting all this evidence together and making a recommendation and using that to help guide what you test for. So it really is so important to have as much of that information as possible. And when people are estranged from their families, not supported by their families, one, they might not have as much access to that medical information that is so important to help them make decisions. They also lose that source of support. So it's incredibly helpful when someone knows they have hereditary cancer gene in their family, for them to have a copy of the relative's test report. That makes it so much easier to order the right test for that patient and know that we're getting the correct yes or no answer that we are looking for. 


Even, it's so easy for me as a counselor to say, okay, you're coming in with this family history. It would be so helpful if you could get us a copy of that test report.  And now, you know, it kind of puts that on the person on is it worth it to try to reach out, you know, over a potential estrangement? You know, how important is it to get that report? And just sort of all those those things to think about that that might not be so that we might not even think about…I’ll call my mom. She'll text it over. It's totally fine. On the other end of things.


For the folks who get positive test results. Now they also have to think about, is it a good idea? Is it even possible to share this information back with those family members? For example, mean, my family luckily is very close. I originally got tested because of a family history of cancer on my dad's side. And I had talked with my dad about getting tested, you know, he was busy, he was working at that point. I had the time, so was like, I'll just go ahead and get tested. I tested positive.


The first thing I wanted to do was go to my family and I sort of like got everybody in a room and told them what this meant. you know, immediately my dad got tested pretty quickly. He was negative and it ended up coming from my mom. And like just that ability to, to go to them and have them understand me and you know, support me right off the bat was like an invaluable feeling. And then on my end, knowing that I was able to give my mom that information that she never would have known otherwise. And then just a few months later, she had a new oophorectomy, which was thankfully, you know, all normal at that point. So it's it's just those sorts of opportunities that weren't even a thought for me that people might have to grapple with, trying to weigh breaking no contact or things like that. Is it worth it to try to warn people? It can be such a more complicated situation. 


Even if people have support from like chosen family or friends, that's great. But I think if you're estranged from your biological relatives, you kind of lose those people who share in the understanding of that cancer experience. As supportive of friends and partners are, I think there's like a certain level of deeper understanding that comes from people that you talk to who are going through the same thing, hereditary cancer-wise. And I think that's why one of the reasons the support group is so important, because it really is a chance to be with people who understand both the queer experience and also dealing with hereditary cancer. They just kind of get it.


Sara Kavanaugh (28:55)

Yeah, yeah, I think so. I mean, that ties into what my next question was going to be with that emotional and logistical challenges that come up for someone navigating a hereditary cancer risk or diagnosis without that strong family support. I'm glad you brought up the support group. I know we mentioned at the top of the show, but maybe give us a little bit more insight into what that looks like.


Maddie Williamson (29:19)

Yeah, the support group in general. We have been putting that on for, I guess since 2021. So it's been going on with force for the last four years. We tend to have meetings every couple of months. Like I said, they are staffed by a force volunteer who facilitates the meeting and also always ⁓ attended by a genetic counselor with some knowledge, obviously, in hereditary cancer. And we do specifically for that meeting have a rule that in all the facilitators and all the attendees, we just ask that they be part of the queer and trans community. We always say we love allies, but the purpose of this group really is to be a place where attendees don't feel like they have to kind of censor themselves or explain themselves and do the work of that educating. It's really just to be in a space where people just get it and can kind of speak freely. 


We always have, you know, good attendance. We have people who've returned to a lot of meetings and then every meeting we have new people.  FORCE covers all sorts of hereditary cancers. So I think like most spaces, there are a lot of people with BRCA and other breast and ovarian cancer risks. But we also get people with Lynch syndrome, with other rare types of hereditary cancer genes. And we get sort of all, we cover the whole kind of spectrum of LGBTQIA+. I think we have every letter attending at some point.


We always have really great conversations in that group. I know I like to go and even just listen and share in people's stories and it really does feel like we can have some unique conversations. We always get a lot of positive feedback of people just being grateful that there is a group specific for those people, I think just for those reasons that I've talked about.


Sara Kavanaugh (31:23)

Yeah. Would you mind sharing a couple of examples of conversations that might happen in that space that wouldn't typically happen elsewhere?


Maddie Williamson (31:33)

Yeah, people bring just issues that they're going through that are kind of unique to the experience. You know, people talking about how, you know, they are estranged from their families or we have lots of conversations about, you know, like surgical options and thinking about all of the options for reconstruction, things like that, because you're going to get sometimes a more diverse experience of, you know, what people have done and tips and tricks. People share tips on how to find providers that they like. And people share a lot of stories about crappy experiences they've had with providers. And we talk a lot about hormones and hormone replacement therapy, you know, after a surgery, a risk-reducing surgery. 


And as much as we still have to learn about this in, you know, the typical cis female population, there are just even more nuances, you know, for the trans and non-binary community in thinking about…Okay, well we know about options for like estrogen and progesterone, what about someone who's interested in taking testosterone and what's the safety of that and what are the effects? So I think we talk a lot about of area that's either uncharted or undocumented and it's really a lot of that like sharing of ideas and brainstorming. I feel like that happens a lot.


Sara Kavanaugh (33:05)

That’s great. So now FORCE isn't maybe the only organization that offers this. So I think just asking the question about like other peer support groups and platforms and other advocacy organizations, like what do you think they could do better when it comes to representation and inclusivity?


Maddie Williamson (33:24)

Mm-hmm. Yeah. And just like you said, FORCE has had this group going for a few years. I know the Breasties is another organization that has an LGBTQ specific support group. Obviously the Breasties are more focused on breast and ovarian cancer risk, while FORCE is a little bit more broad. I think also just as communities, it's great to have a specific support group. I think also just doing the work of reviewing all of the rest of your materials, your research materials, your educational materials. Are they inclusive? Are you, you know, do they include any misconceptions or, you know, things that are outdated? Because if you're trying to, again, say that you're a safe place for these individuals, kind of got to walk the walk and really make sure that not just this little corner of your website is LGBTQ friendly, but just making sure that it's all inclusive. And as you are, if you are an advocacy organization, if you are asking for things from your constituents or asking them to sign on to advocacy pushes, make sure you're keeping all of those communities in mind that are depending on you for support and trying to further those causes.


Sara Kavanaugh (34:44)

I know we'll touch on resources when we close, but is there a resource that comes to mind for providers to do that check, to do that, we'll call it like a quality check, if you will, with how they can maybe refresh their website or their forums or their content? Are there any resources available that can help point them in that direction?


Maddie Williamson (34:56)

Mm...That is a good question. I think what I would say off the top of my head is a good place to start would be the National LGBT Cancer Advocacy Group. I might be getting that name a little bit wrong, but I think they are a great group that is sort of focused in on some of those issues and will have language that is inclusive and the most up to date. So I think if you are looking for what inclusivity, accurate information looks like, that would be a good place to start.


Sara Kavanaugh (35:40)

Awesome. That's great. So our last topic we're going to cover today is representation in research.  So we know most population level research still doesn't collect SOGI data. So SOGI stands for...sexual orientation and gender identity. So how does that lack of inclusion affect risk assessments and maybe even care recommendations for LGBTQ individuals?


Maddie Williamson (36:10)

Yeah, and I do feel like it definitely has gotten better. It's asked for more often, certainly, than it was in the past. I don't know how that's going to change going forward with the crackdown on DEI and research. But as to how not collecting this data affects the community, I think the answer is that we just don't know. If we're not collecting the data, we just don't know.


I think one big thing is how screening guidelines should evolve. You know, many current recommendations in hereditary cancer are based on gendered assumptions, like women over 40 should start with mammograms. But what happens when someone doesn't identify as a woman or is on testosterone and has a different tissue profile or has had you know, a top surgery where some of the breast tissue is removed, but in a traditional top surgery, it's not all removed like in a mastectomy. So some of that remains.


How do we tailor screening and prevention to reveal, to be applicable to the diverse, you know, bodies that we have ⁓ as humans? And I think, just thinking about are the risks for cancers really different in this population? And if so, where is that coming from? I think overall, if you don't ask, you just don't know. And that leads to those guidelines not being fully applicable or fully tailored to that community.

Sara Kavanaugh (37:51)

Yeah, I can see that. You know, I don't know if this is I don't know if this example resonates enough but I was reading Dr. Mary Claire Haver. She's a gynecologist, menopause specialist. And she has a book out called The New Menopause and I just kind of peruse through it because I'm going to be doing a segment of episodes related to surgical menopause down the road. And I came across hormones specifically for people with BRCA. And I'm like, but I have CHEK2.  But even in her book, you know, somebody who is a medical provider, you know, just specifically mentioned BRCA and I'm like, other hereditary cancers, mutations should be included in this, I almost want to like email them and say, hey, next version of your book, make sure you're inclusive of other mutations, because there are lots of us walking around with mutations that are even higher risk potentially, you know,


Maddie Williamson (38:48)

Yeah, no, And I always say, after I got my results, I was like, if I was going to be positive for something, I'm glad it's BRCA1 because I know exactly what to do about it. And that's where the research is. so I hear you.


Sara Kavanaugh (39:04)

Yeah, that's a great point, right? A couple decades now we have behind us of BRCA and it's often, you know, looked to, to assess potentially other mutations, but that's not always going to be the case as we know.  That’s why research is so important in this instance. So, as we wrap up the section on research, like what unanswered questions remain? And you talked a bit about hormones, after risk-reducing surgery, I mean, that's still an open question. I think in general, just following the Women's Health Initiative. How can we advocate for more inclusive research?


Maddie Williamson (39:30)

Yeah, I feel like advocating for more inclusive research feels like such a big ask right now, again, with the state of the world and the country. It seems like there are just so many fish to fry, for lack of a better word. I feel like just dealing with the political day-to-day news feels like running a marathon.  

I think the first thing to do is to not burn out by making sure that you're practicing self-care and caring for each other as much as possible. Because I feel like they want you to be overwhelmed. They want you to feel hopeless and like the task is just so insurmountable that you can't possibly make a difference. The thing is you don't have to do everything all on your own.


Look for the groups that have been preparing for this. That have been organizing larger advocacy efforts, and contribute to those where you can, either by volunteering, monetarily, whatever you are capable of at this point. 


Personally, as a research advocate, I volunteer time to review proposed research study designs and surveys to make sure that they are inclusive.  For example, I was just recently looking over a proposed survey that was going to be going out for research asking about women's experiences with hormone replacement therapy after a risk-reducing oophorectomy. And we talked through what questions they were asking and how to make the wording understandable and really get at the data they wanted. And I brought up a question about, “Okay, how are experiences of trans men and non-binary individuals going to be factored into this data? Is that something that you want to collect? you feel like you want to include that information? Do you feel like you just want to focus on cisgender women, you know, as far as the cleanliness of your data?”  But really being the person in the room to kind of bring that up as a question, if you are thinking about it, just being in the room to bring that up. Because again, people are well-intentioned. They have a lot of things on their mind. They don't mean to be exclusionary. But if you don't ask and if you don't bring it up, then that's how things get left out.


Sara Kavanaugh (41:57)

Yeah, absolutely. So I appreciate that you're having the eyes and the ears on these things. I know it's appreciated in the community. Okay, so as we wrap up, let's let's talk about kind of revisiting how health care providers, how straight and cisgender listeners, know, how we can support the LGBTQ plus patients navigating hereditary cancer risk. Let's just start with healthcare providers, what is one thing they should keep in mind when working with LGBTQ plus patients?


Maddie Williamson (42:34)

I think if I can like make one ask or like impart one thing is that gay and trans folks are dealing with a lot right now and at this point in time they might be using all of their bandwidth just to stay safe and meet their basic needs. So to ask them to be doing their own educating, to be doing all their own advocating. It is exhausting and they may just not have the energy right now. Obviously, if they do, they're gonna be out there fighting. We know this. If you have the bandwidth and if you are an ally, offer to contribute to these causes. Even if, you know, you might be afraid to say, well, it's not my place to bring that up. I'm not part of this community.


Go about educating yourself and educate yourself as much as possible before asking from education from LGBTQ individuals or just being cognizant about those asks and keeping in mind, are you asking questions for a reason? Are you just asking because you're curious? ⁓ thinking about those sorts of things. But like I said, if you can, offer to contribute to causes with time, with money, contribute to mutual aid funds. That's how we take care of each other. And if you are in a position right now of relative safety, privilege or influence, recognize that and use it for good.

Sara Kavanaugh (44:03)

awesome. Those are great tips. Now for again the straight and cisgender listeners, what does meaningful support look like in this space? How can we show up better? What can we do?


Maddie Williamson (44:18)

I think I would say all the same things. Look for what's out there. Look how you can be helpful. Examine your own biases and assumptions. Think about where you've gotten that information and what that source is and is it reliable? And are there any beliefs you have that might be misconceptions? And then if you have that desire to help, go out and help.


Sara Kavanaugh (44:41)

That's great. Okay, so do you have any resources, websites, other support groups.  We’ve mentioned FORCE and both of us being advocates, of FORCE you know, we believe in everything that they do, but there are other resources out there, or even some tools that you would recommend for listeners who want to learn more or need help in navigating their own journey.


Maddie Williamson (45:02)

Yeah, I think, like you said, you've talked about FORCE. They have a ton on their website, so I'll always be an advocate for them. But I think just where you can, finding online resources, and I'm being sort of general, just in general support groups where you can talk to people who have the same experience as you are so valuable. If that is intimidating or if you have specific questions, maybe you're looking for more one-on-one support, which is also something that FORCE and other organizations offer. 


One caveat to that is if you are able to be a volunteer as someone with a unique experience willing to share that experience, I think those sorts of groups are always looking for more volunteers. A lot of times when people get paired with a peer-to-peer support person, it ends up being like the same person across all these groups because there just aren't that many people who fit that and have the ability to serve in that role. So I think, you know, just in general, seeking out support where you can. And I really liked all of those links and resources that I think you're going to put in the description.


Sara Kavanaugh (46:09)

Yeah, I will add other nonprofits that are in the hereditary cancer space resources.

So I may be adding that in there as well. Okay. All right. So finally, where can people find you or connect with you if they want to learn more about your work? Is this something you're open to?


Maddie Williamson (46:46)

Yeah, yeah. I don't really have a professional account, but I share my journey on social media. My Instagram handle is just @MaddieLucy27,. And then if you are interested specifically in queer and trans experience and hereditary cancer, I also really recommend my friend's account, OtherSarah (Sarah with an H) on Instagram. She's also a genetic counselor and a hereditary cancer person and a writer. And so writes a lot about their experience and things like that. Sometimes much more eloquently than I could ever hope to. So also recommend that account.


Sara Kavanaugh (47:35)

All right, we'll put it in the notes for sure. All right, well, Maddie, this has been amazing. Thank you so much for just giving us some insights into what the LGBTQ+ community faces in navigating hereditary cancer risk. I appreciate your experience and just I appreciate you connecting with me.  This conversation is so important and I hope that listeners see these real challenges and possibilities for building a more inclusive and supportive path for anyone facing hereditary cancer risk. 


Maddie Williamson (48:10)

Thank you so much for having me. I love having an opportunity to talk about this. It's obviously very near and dear to my heart. So I just appreciate you let me come on and talk a little bit about it.


Sara Kavanaugh (48:22)

Thank you. Well, to everyone tuning in, I hope this episode sparks reflection and action, whether it's reaching out for support, learning more about risk or finding ways to advocate for better care. 


Be sure to check for show notes with resources, ways to connect with Maddie and her colleague’s organization on Instagram. We'll get that information in the notes. If you want to follow along with more conversations like this, follow me on Instagram @PositiveGenePodcast. You can also visit the website of the same name.


Thank you so much for being a part of this community. Remember, you're not alone in this journey, and we'll talk to you next time.


Call to Action: If you’re navigating hereditary risk (or supporting someone who is) and feeling unseen, I encourage you to reach out, join a peer support group, and connect with providers willing to learn. And if you’re a provider or ally—take a moment to review your intake forms, language, and sense of belonging in your practice. Change begins with one conversation.

Resources:


Support & Genetic Counseling


LGBTQ+-Affirming Care & Education

  • National LGBT Cancer Network - Offers affirming provider directories, cancer support groups, and toolkits for patients and clinicians. cancer-network.org

  • OutCare Health - U.S. directory of culturally competent providers for LGBTQ+ patients. outcarehealth.org

  • Callen-Lorde Health Center - LGBTQ+-focused healthcare and advocacy based in New York but with broader relevance. callen-lorde.org


Research & Representation




Disclaimer:

This podcast is for informational purposes only and is not a substitute for professional medical advice. Always consult your healthcare provider with any questions about your health.


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