In early October, Our Lives brought together a group of local medical professionals to talk about progress made and challenges remaining for LGBTQ-related health care in Wisconsin. They discussed everything from changes in medical record keeping, to comprehensive training of medical staff at all levels, access to transgender-specific care, our relationships with our doctors, privacy concerns, barriers to care, and much more.
Molly Herrmann of Humble Pie Consulting agreed to mediate the conversation. Other participants were Dr. Kathy Oriel of Oriel Medicine; Shiva Bidar, Chief Diversity Officer for UW Health; Jay Botsford, program coordinator with both the Transgender Youth Network of Wisconsin and the Wisconsin Transgender Health Coalition; and Dr. Britt Allen, assistant professor of pediatrics at the U.W. School of Medicine and Public Health, co-medical director of the Pediatric and Adolescent Transgender Health clinic, and co-founder of the Transgender Youth Resource Network.
First, the positives
Molly Herrmann – We’re in 2018, there’ve been some changes and things that are going better than they have in the past. I thought we’d just start with recent improvements. What’s going well?
Shiva Bidar – The fact that there is actually intentional attention and work that’s being done around LGBTQ health care, so that it’s not anymore something that is being done in pockets. UW Health is intentionally trying to look at how the delivery of care is happening system-wide and how we can improve that.
The second one—and this is still, like everything, a work in progress—is attention and improvement around our electronic medical records and how can we really make sure that it is allowing us to create a more affirming way of working with our patients.
The third piece is the willingness to have the conversation around creating a comprehensive gender services program at UW Health. We are willing to be out there as an organization and say this is part of what we want to do and to highlight the work.
Kathy Oriel – I think some of the really concrete progress has been around policy. There have been fits and starts; there were great hopes with the Non-Discrimination Policy nationally. Then there was an election. There is progress in the fact that there are two people [who won, in court, the right to] medical assistance. Medical assistance is public health insurance for people that don’t have a lot of economic resources. There was an injunction saying that services need to be provided by the state. Once there is a ruling with public health insurance, Medicaid, or Medicare, the private insurers tend to follow.
Jay Botsford – I do want to make sure that I’m clarifying between health care and health outcomes, because health care counts for about 20% of health outcomes, if you have access to care. Looking statewide, some of the things that have been really positive in both realms is—I will echo Shiva in saying that there are more folks focused on intentionally providing exceptional care. Most of that has been within larger health systems.
We still have some gaps for folks who need access to, for example, free and federally qualified health centers. Planned Parenthood has been making progress. Some public health departments have been making progress. I also want to name the success that we had in the Group Insurance Board, for making their decision so that state employees and all employees on the state insurance plan, which ends up being about 250,000 people and their families, will have health insurance starting January 1 that no longer has an exclusion for transition-specific health care.
Looking at health a little bit more broadly, something that doesn’t get talked about very often, that I think is really important, is accessibility of pre-exposure prophylaxis for HIV. It has made a huge impact on health. Particularly for gay, bisexual, and queer men; and other men who have sex with men, and trans folks. Because in those populations are where we see the most burden of HIV in the state. Having access to PrEP in a meaningful way, to have programs that are trying to get into peoples hands, has really been a huge movement forward.
Britt Allen – I think the other thing to look at is, what is the information that we have available about health outcomes? There are some things that are measured and that we’re able to ask questions about over time, but I think we’re still pretty much in the infancy of gathering data about the health of LGBTQ people.
There are huge disparities for some of the kids I’ve seen from other parts of the state, who are in places where they don’t have resources in their schools. They don’t have resources locally, in terms of health care. So we have some areas that have invested a lot of resources that are really rich and growing. I think our school district does a really nice job in supporting kids and their health that way. But it is also in contrast to other areas that really haven’t been able to take those steps, or haven’t taken those steps.
SB This is maybe more of a statement about Madison. We talk a lot, and everyone is, in theory, supportive. But what are the actual actions that reflect that value statement that people make? Look at Jay’s position. The fact that [UW Health] has gone from a grant-funded position to now a position that’s being funded by the organization. Having been able to really say, if we are gonna be talking about these issues, and saying that we really are committed; that we really need to put the money behind it, and the resources.
We just also hired a new RN gender services coordinator whose going to be coordinating the patient experience across the organization. That’s a brand new position that was also approved. I think that’s where you start seeing that it really is a longer-term commitment. When people start saying, “Okay, we are gonna actually have roles within a system that are dedicated to this work.”
KO When we look at health disparities—and again this is through my lens as someone who’s been in both worlds, and is currently doing primary care and medically assisted therapy—treatment for people who struggle with substances is obscenely gendered. Residential treatment even, partial hospitalization programs. The positive of that, though, is there are conversations, and there are nationally programs for folks with queer identity. But even very traditional treatment programs are now asking the question, “How can we help people in their recovery and not alienate them with the second intake question?”
MH Reminds me of sort of the direction that the intimate partner violence or domestic violence world has been going for a while, from this very “these folks are here, and these folks are there,” to that’s not always the case. That’s an area that has really grown a lot to be more inclusive, and to recognize that it doesn’t always look like we always thought it would.
Local advocates & successes
SB There are people who have been able to start their practices, that are really focused, and really relevant to the LGBTQ population. Such as Owen and Chelsea [Karcher]. Having people that are able now to lead work in this very concrete area that continues to be a huge gap, that’s a positive that there are people that are doing that work.
BA Right, and just to speak on what you said before, Shiva, also to have resources from the county. So for example, Owen and Chelsea are doing work with support from a county grant to address issues of access to care. I think that is a positive thing. I also think that the work in the formal education that’s happening in schools for teachers and for students in the school district, has been something that, from my point of view, as a pediatrician, has changed the way that kids and families talk about LGBTQ identities and experiences. And giving kids access to affirming and supportive language and actually in way that challenge their families and their communities to also be more supportive. I think that’s been a good change.
KO That made me think; hats off to the journalists in the room. There have been families and individuals who have had the courage to tell their stories publicly. Our Lives has played this amazing role in that, too. When I think of especially our youth seeing other people like them in mainstream media, it is a really positive thing.
JB I also want to name and uplift the work of some of the organizations that have really been addressing these issues. Particularly looking at health inequities and health outcome inequities and how do we go upstream to address some of this. Diverse & Resilient, which is based in Milwaukee, has been continually pushing these conversations forward.
Freedom Inc doing the work that they are doing to get police out of schools to protect young people from police contact, because the school to prison pipeline continues to massively impact LGBTQ students of color in Madison and throughout the state. We see, over and over again in both juvenile and adult facilities, more LGBTQ people than cis and straight people; and significantly more QTPOC folks than white LGBTQ folks. So there is this concentration that is really happening, and then those spheres abuse and mistreat these young people and these adults horribly.
And then there’s a lot of non-LGBTQ organizations that have been really investing in LGBTQ work. One of the ones that the trans health coalition has done a lot of work with is Public Health Madison & Dane County, particularly their sexual and reproductive health folks. They are really invested in making their serves accessible, and then also looking at their prevention services. Again, those different determinants of health, what else needs to happen in Dane County to make this an exceptional place to live for LGBTQ+ people. And for everybody to be able to get the highest level of health they can.
Barriers to care
MH Britt, I quote you all the time saying, “Somebody interacts with seven people when they come to UW for an appointment.” So, how do we get all those seven folks at all those systems? When I think of challenges, I think we’ve gotten beyond the, “There’s that one doctor who’s LGBTQ friendly,” but some people are still having experiences, and I’m still hearing about them, where somebody really messes up. It happens around parenting sometimes, like, “Who’s the real mom?” or “Who’s the parent?” or “How do you fit into this?” That’s still a real turn-off.
JB Are we past that? No, we’re fucking not.
MH Not in Milwaukee.
JB Not in Madison.
KO I have been arguing for 25 years that we don’t need a Fenway Health. We don’t need a Lyon-Martin Health Services. Queer health care is mainstream. This is not specialty care.
There are such vulnerabilities in large systems, and with medical records where people are telling you the most painful, private things. If you put it in Epic, anybody can go to the search bar. Any visit through the last decade, and they can search that word and find it. With vulnerable folks, intimate partner violence, queerness, substance use that has really intense legal and social consequences, what is the right way to provide care to people? I’m not sure I know, but I think it’s something we need to ask.
JB Kathy, I appreciate you bringing up the electronic health records. I do a lot of training and education with providers and systems… When I look at EHR EMR, one of the many good things about the Affordable Care Act was that systems had to port over to them.
In talking with providers, one of the major things that comes up every single time about providing trans-affirming and LGBTQ+ affirming health care in general is the goddamn health record, because you can do things like search. So, everybody gets outed to every provider that they see within a system, or every provider that has access to that medical record, because there’s a relationship between that system and this system, which you don’t know about because it’s an opt-out, not an opt-in, and your provider generally doesn’t educate you about it because your provider may not even understand it.
KO Folks who are 10, 20 years post-transition, they don’t have gonads, so they need hormones just like anyone. Two people used this term [to me]. They’re like, “I’m not gender dysphoric. I’m gender euphoric.”
One of the things I would do is, you have to use the number code, but you can change the wording. I’d put “gender euphoria.”
BA There’s definitely hope, and I think one of the challenges in all this is to recognize, both for systems and individual providers, is helping people sit with the idea that this is complex and sometimes ambiguous. That there may be people that it’s really hard to think about that this might be in a note that my orthopedist could find. And other people that are like, “I don’t want to come out to every provider that I encounter. Like I want that to be there, and I want it to be consistent, and I want to be appropriately gendered at every visit,” and to try to build things that actually support that.
Emily Mills Wouldn’t this help all patients?
SB I think that’s the exceptionalism of it and the curiosity. Like if it weren’t so stigmatized to be trans or non-binary—or gay still, for that matter—no one would be searching for it in the first place.
MH That’s the issue. We’re afraid because we don’t know who the provider is and what their belief system is that’s going to see it. The problem is that they’re overly curious about what kind of body parts we have or how we’re partnered or whatever. Then we’re withholding information from a provider we do feel comfortable with because of that.
Research & chill
KO I also think that hormones, in their various forms, are not that different. In some ways, I’d like to see medicine just chill, man. My God. We throw oral contraceptives at cis women—which is great, really—and stick implants in arms for contraception and never check a lab test.
We don’t have to send folks to a tertiary care medical center for transition hormones. We don’t poke them in the arm every two to three months. So, yes, we need to be curious about what might be unique, and this is bread-and-butter medicine that we do every single day.
JB I absolutely agree with you. One of the things that gets in the way for providers who are not informed or experts, is “But there’s no research!” Part of this is we need to know, so we can tell doctors, “Chill the fuck out.”
Or if a system will allow them to actually chill out because there’s not a standard evidence-based intervention that demonstrates that this is fine. Systemically there’s lots of pressures on just the health system and what they can do to continue to have a contract with Medicaid, to be able to not get sued for violating the many, many health care laws, which then gets transmitted to providers, which then gets transmitted to patients and interferes with the way that care can be provided in a really effective way.
If a health center loses its contract with Medicare or Medicaid, then there are people who have no access to health care in that region at all. So, there’s a balancing act. Then we need some research that actually looks at health outcomes for LGBTQ people in general and then effective interventions for LGBTQ people in general. We have how many decades of research about smoking, and this tiny little bit of it actually looks at LGBTQ people, even though we know that the rate is double that of straight people.
MH And [abatement efforts] weren’t as effective with LGBTQ people. Because smoking’s gone down generally, but not for LGBTQ people. Clearly something is going on.
Of intersections and building trust
SB I think one important piece is LGBTQ folks of color. I think that if we were talking about, especially in this community, layers of adding to the inequities that we see, that’s an area that we really need to be paying attention to.
JB What would make the biggest difference for LGBTQ folks of color? Ending racism. Honestly, ending racism would make the world better for everyone, including white people. Ending heterosexism and cissexism would make the world better for everyone, including straight and cis people. Making PrEP, for example, more accessible for people is going to significantly address HIV infection.
BA And could be a gateway service. If you get somebody in—a young, black, queer man in to get PrEP because it’’ a very immediate, solutions-driven prevention strategy—pair that with a primary care visit as well and have that go well. Then you’ve got somebody with a good experience on their record, and so, maybe it’s finding what the gateway service is that would help people.
JB And there is research that indicates that doing that is super-effective. If you have a great LGBTQ-affirming program that is doing PrEP really well and is able to partner with providing primary care in that visit and also in the HIV services realm—I’ve just been reading a bunch of research and doing presentations for comprehensive care providers this month. If you have, again, really affirming HIV care and then are able to partner that with providing hormones for trans folks, that makes folks more likely to come back and continue to get the HIV care that they need whether that’s PrEP or ART.
There are definitely ways, in the systems that are already functioning really well, to find partnerships and add things that, again, have to be meaningfully affirming, affordable, accessible, competent, and appropriate for what folks need. It’s those pieces that most providers cannot do right now because they don’t know how or they panic in the room.
Patrick Farabaugh A lot of my experience just comes through my own peer and social groups. The thing that I’ve seen the most is when your care isn’t directly related to your identity. People withholding their identity entirely. Probably the thing that I get the most referral requests from people for is primary care providers. As of statistics from a few years ago, gay men in town, the percentage that were out to their PCP was somewhere around 35%. I don’t think that’s gone up much, even now.
KO It’s just not the same as behavior. Being a gay man does not necessarily—I know people often don’t know this, but—it does not mean that you’re at higher risk for HIV.
BA We did a survey of trans youth in Wisconsin and a large percentage of them were not out to their PCPs.
JB It was about a third. Then of the folks that were out, more than three-quarters of them experienced significant harm or negative interactions with their PCP.
BA I think that also varies a lot based on geography. There are plenty of kids that come to me from far away that aren’t out to anyone in their community apart from close friends, maybe, and if they get to me they’re out to their parents, usually.
I think there’s on-the-ground stuff that can and should be done, but then I think, what are actually the big-picture things that could drive that? Because I think that a lot of us learn to do a lot of education, and we try to reach out to as many spheres as we can, but I’m thinking about nondiscrimination legislation in every state related to sexual orientation and gender identity. Having a meaningful, nondiscrimination portion of the ACA or whatever the health care law is, and within organizations also having that. They have to be meaningful, though.
Somebody has to say, “Look, you committed to this, and so I want to hold you accountable.” Like things that are actually reinforced, and there’s actually resources devoted to. If you’re gonna say that you include sexual orientation or gender identity in your non-discrimination policy, that has to mean something, and that means that you review what comes back to patient resources, and you think about what it means to actually change your system in that way.
MH This happens in schools, too, where there’s policy, and GSAFE will talk about this, but there’s not procedure built onto the policy. You get this non-discrimination policy that says we can’t discriminate. So what are we gonna do? And that’s when you get into the bathroom facility stuff, that’s when you get into name change, that’s gonna go to student records, and so I think you’re right, it’s the starting point, but then there has to be some ownership on the part of whatever the system is to make it happen so that we’re not discriminating against black people or queer people or black queer people. We’re gonna do these things so that it doesn’t happen. I think it’s the addition of procedure and practice to policy.
Who’s educating my doctor?
BA I think there is room and space to do a lot more. I would say, when you see again what’s happening in medical school now compared to when we’re talking about medical school 20 years ago, great progress. Does everybody have the same training and understanding? No. Are we working to try to have some better standards and what expectations are? Yes. Is it gonna take a while? Yes, too.
JB If you look at the two medical schools in Wisconsin, just as an example, neither of them have required core courses that cover LGBTQ+ health. So you can take it as an elective or maybe you go to that one day lecture where they invite a whole bunch of people in and don’t pay them and mine their medical trauma for the benefit of the medical students.
There are definitely examples where there’s required course content or you can choose to opt-in to a whole training series that’s part of your medical school. That’s great. But then we think about just how gender and sex are even talked about in medical curriculum and the ways that pictures even show up in medical texts. It’s ridiculous.
In most health care systems, there are not options for fellowship or training and residency or an internship that actually focuses on LGBT populations in any way. That really varies location to location. We just have tons and tons of mid- and late-career professionals who have never had a patient come up to them, never had had any sort of mention of this population. We have this widely varied experience where folks have intentionally sought education that often they have had to pay for themselves or take time off for themselves to find. Some systems that have a little bit of education built in and some that are trying to do better, and some just aren’t doing anything at all.
Better patient-doctor partnerships
EM My particular experience is as a cisgender woman who identifies as bisexual, who is also polyamorous. I’ll go in to my doctor and be like, “I would like to get STI testing.” The doctors sometimes push back and seem confused that I would want that, asking “Have you been having sex with new male partners?” “Well, no I have not, but I have a new female partner.” And they’re like, “Well why would you care? You don’t need this.” And I’m like, “Why am I educating my doctor right now?”
KO I think the reason you’re educating your doctor is because you will get better care. It is only by the grace of hundreds of people who, and not just queer people, folks with relatively rare conditions, that have been patient with me and have brought things to me, and I have learned so much. I think this model of teaching my doctor or my provider isn’t necessarily bad. The question is not, “Do you have to teach them?” but “Are they receptive to input, and are they willing to have a conversation with you about it?”
BA I agree. I’m glad you said that Kathy, because I agree that there is this belief or perception that somehow these doctors know it all. They know everything about every condition. And it’s impossible. Why would they know about everything? I think the difference is almost an attitude of inclusion, a behavior that you’ve taken time to learn the basics. I’m sorry but in today’s world, you won’t be like, “what does ‘cisgender’ mean?”
I think it’s really also telling everybody that this is a partnership with your physician….you have to have trust. Trust is the base and I think that the work that needs to be done and that we need to continue engaging is, how do we move from a place in which, for very good reasons, there have been trust issues? Like what Patrick was saying about the percentage of gay men out to their PCPs—it’s a trust issue. People don’t wanna say, because they don’t know, or they have experiences where things have not gone well after they’ve disclosed their sexual orientation or gender identity.
JB I also think that it is inexcusable, in the era of the internet and a million resources that have been created that are free and often have continuing medical education units attached to them, that any provider is requiring a patient to educate them about their identities, groupness, and communities. It’s one thing if you come in and you have a condition that affects 0.0000002% of the population and the doc has never heard of it or maybe heard the word in medical school and now needs some help to make sure that your care is happening in a really good way.
It is another thing when we are talking about targeted, historically, and socially marginalized groups who are in down power positions socially and then are in down power positions when they enter that freaking medical office, and are put in a position of expecting bad care. And now I also have to educate you. I don’t care how open you are. I don’t care how trusting you are. If I have to define what “trans” means, if I have to define my body for you, and you don’t understand what that means, that is absolutely inexcusable. You can look it up.
Personal & professional accountability
MH The one thing I would add to that is that there is no one magic solution for addressing unconscious bias. That’s internal work that people need to do. I can provide the truth, which I’m doing, for people to do that work, but it takes personal commitment. Unlearning your biases, unlearning racism, unlearning all of these layers of things that happened to and for the LGBTQ community, all of those, it’s work that I do daily. I realize daily what I have done that wasn’t the right thing to say at the right time. I reflect on those things. It keeps me up. People need to be willing to do that. It is not easy work and it is not like, “Okay, now I honor my racism and I’m over my phobia.” Great. And it was all really a nice trip down some beautiful landscape. No, it’s hard. I think taking responsibility is the biggest thing.
BA And I think people need to make it a priority, right? Insistence on making it a priority. Because it is life or death.
JB I tell people that one of the best ways that we can make change is to make things expensive and embarrassing for people over and over again. ‘Cause if you make it expensive and embarrassing, then the system has to change, a person has to change.
Get involved, stay involved
MH What story do we want to tell the LGBTQ+ communities about the status of health care in the future that we see? I think it’s that there’s been change, and there needs to be more.
JB Hold us accountable.
KO I think that, in addition to work being done systematically, for our community, it is not any one person’s individual responsibility to educate their provider. But, if they’re in a place and they have the energy to write a letter outlining what happened to them in the visit, those are read and those are taken in. It’s not their responsibility, but I think, if people have the motivation to do that, each individual can continue to help shift things so that people understand.
MH There is power in an individual or even to just get involved. There are initiatives, down to writing letters.