Self-Healing, Growth, and Advocacy in the Pandemic: Psychologists Share

Yesterday, we hosted a wonderful webinar with The Society for the Psychology of Sexual Orientation and Gender Diversity (APA Division 44), where a panel of psychologists and trainees across career phases discussed their experiences during the COVID-19 crisis. Our focus is on the experiences of gender and sexually diverse psychologists, as well as on service to LGBTQIA+ patients, but I hope this is useful to practitioners and servants from many different backgrounds. I had the privilege to moderate a panel of my distinguished colleagues. They shared how they are caring for themselves – from taking joy in their families to reinvigorating their mindfulness practices. They shared growth in their understanding of themselves and their role within their communities. Frustrations, they had too, and they shared limits in being able to care for patients, from barriers to providing telemedicine to rural and poverty-affected patients caught up in struggling with the unintended consequences of social distancing and shelter-in-place orders. We discussed feelings of being sidelined as behavioral health providers and teachers, in this crisis, recognizing advocacy opportunities this situation brings, and, together with our attendees and fellow Division members, we talked about how we can do more. Check it out!

Oh! Two more things. Besides making sure the community has access to and can process empirical science, and helping individuals and communities manage the major life changes and behavioral interventions COVID-19 has required, psychologists have been working together with our many siblings-in-arms to recognize, address, and minimize disparities in access to care and in who gets an opportunity to thrive during this challenging time. The hashtag is #EquityFlattensTheCurve, and you can follow this link to find out more.

And, finally, to everyone out there: whether you are on the front-lines of face-to-face crisis healthcare delivery, whether you have been able to implement telemedicine to continue to support others, whether you are doing some other kind of essential work, from home or from your regular place of work, or whether you are just helping your community by practicing social distancing and sheltering at home, or by everyday acts of love and kindness for your family and neighbors. You are loved. You are valued. No one may ever truly understand the sacrifices you are making, but you are heroes to us.

Navigating “Us” vs. “Them” and the Role of Lived Experience in Regulating Ethical Healthcare Practice

A colleague shared this recent piece by a social advocate who chose to leave the practice of applied behavior analysis. The piece was noteworthy to me for a couple of reasons. First, she and I believe in a lot of the same things, broadly – inclusion, advocating across lines of lived experience for marginalized people, as allies and not as usurpers of their place in the conversation. More specifically, like her, from what I can gather from her blog, I believe in a world of co-advocacy and partnership with autistic and non-autistic people. Although I believe in the idea of the autistic cognitive architecture, I also think that, much like the idea of “white” obscures differences inside the majority culture and maintains the us vs. them system by creating a false appearance of homogeneity, recognizing that neurotypical brains vary greatly is important, as well. Like the author, I’m uninterested in curing autism – I simply want a world in which autistic people can recognize their dreams and have the means to chase them*. So, we’ve got some common basis from which to agree and disagree. Second, of course, although some time ago, I made clear that I am not an evangelist for ABA and not even a practitioner of it, myself, I did make the choice, really, and take full responsibility for it, to focus my own Center for Autism on early identification, treatment planning, and early intensive behavioral intervention, or ABA therapy, for autistic** preschoolers.

As an aside, watch this. We need to embrace and empower autistic voices.

Back to Steph’s viewpoint. I think it is an interesting viewpoint – I had not seen this particular article before, but I’m familiar with the perspective, and she has a lot of important things to say. Part of me wishes she would not have chosen to do what she did – walk away. I respect why she did it – and I could see making the same choice in her shoes. I also respect and embrace the anger. But the reality, too, is that there’s a groundswell of support behind the idea of ABA – 39 of 50 states, I think now, covering the vast majority of the population, individually passed coverage bills, most of which specifically apply to ABA (and not broadly to autism therapy). In all of these states, strong networks of the parents of autistic youth were involved in advocacy. I can’t speak for them all, but I was here, in Michigan, as a small part of this happening here, and I do know that I testified alongside autistic young adults who supported the legislation. But while the point that this did not happen over the dead bodies of autistic people, in the sense that there is disagreement amongst autistic people over the topic of early interventions, the point really is that it did happen.

Photo of one of my actual kids and one of my actual (past) therapists, both of whom I love (source: Hope Network)

Photo of one of my actual kids and one of my actual (past) therapists, both of whom I love (source: Hope Network)

Here in Michigan, we’ve added well over a thousand children to ABA therapy in the last three years. So this is a thing. And the reality is that most of the people trained in behavior analysis have no exposure, at all, to the debate on its morality – they are definitely taught ethics, but the ethics are unquestioning (or at least, they seem this way to me, based now on knowing many practicing behavior analysts) with respect to the basic tools they use, as well as the basic assumptions they make about the lives of the kids they serve***. So the result is a strong divide – hardly anyone inside the system is talking about this, and hardly anyone who is talking about this has any relationship to “the system,” which is a real barrier to positive change. This means that things even that shock the vast majority of us, about which there is little or no controversy, like the Judge Rotenberg Center, whose use of shock therapy to “treat” autism is internationally considered torture, but continues quietly in Boston, even right now****.

To me, there are two big issues we must somehow overcome, besides retaining people like Steph from the article in the conversation (if not as therapy providers, as participants in developing a more ethical range of services).

The first is addressing the lack of autistic people in the ranks of early autism service providers and developers – I think this is a real shame. It was a big deal to me to have an autistic staff member, and I finally accomplished this some three years into being at my Center, and more than two years after taking control of my Center. What I really want, but I will admit I don’t know how to do yet, is to have autistic therapists collaborating on the therapies or services for autistic kids. I really hope someday the universities who train in this area do more to get people who have lived experience to join the ranks of trainees and therapists. The problem is that none of us can ever really know exactly what it’s like to be an autistic person, and this will always be a limiting factor with respect to our ability to make ethical judgments. And given the amazing range of autistic people, unlike some other populations, this should be an addressable problem.

The second is that autistic self-advocacy is full of people who have voices – people who are not or not very “impaired” or “disabled” in the sense that society traditionally defines it, whether or not they identify themselves in that way, and who thus are able to participate in the traditional, unmodified discourse (that is ableist and assumes the kind of dialogues that neurotypical people have and use). I love these voices of autistic people, even if they are a subset of a larger whole, and I celebrate them even if they say things I don’t want to hear, but the danger implicit in this is the same kind of danger, say, that would occur if affluent black people who are isolated from deprivation, poverty, and violence, were the only advocate voices on behalf of all black people*****. Or it’s a danger I navigate, myself, when I advocate for trans people – suicidality, poverty, lack of family/community acceptance, and hate crime / violence are all real things, that happen entirely too often to “my kind,” and at the same time, I’ve never experienced any of them******. This is actually more relevant than it might seem – Ivar Lovaas, relatively later in his career, collaborated with John Money of Hopkins in developing LGBT conversion therapies, essentially applying ABA to the LGBT “problem” with disastrous consequences…. Now, many states are now in the process of making conversion therapy illegal (I hope Michigan joins, someday) and President Obama has joined this call, himself. I wasn’t taught this when I was first exposed to Lovaas’ work. I did become aware of it, shortly after I started at the Center, and ever since, I’ve always been conscious of it in trying to build and to understand.

The difference is that, although it can be hard to hear them, people marginalized for their race, their sexual/gender identities, and by poverty, deprivation, and violence – they do have voices, and more and more, they are taking their place in these advocacy frameworks. But, in the kind of neurodiversity view for which the author advocates, how exactly do voices of people who don’t have voices count? This isn’t rhetorical. It does sound entirely like the maddening conversation in which the majority always asks to be educated on the backs of the minority. At the same time, there is legitimacy in a question of how a conversation is shaped that is truly inclusive, if one believes this kind of broad neurodiversity model (and eschews the idea of any kind of therapy or special services that seek to help autistic children gain skills that neurotypical children gain and they don’t, or which NT kids gain more easily than autistic kids, whether or not they are based on a “curative” model).

And, I think there’s a complex question of how much relevance people who do have voices have to the welfare of people who don’t, although certainly, just as in the case of LGBT advocacy, lived experience should count for something, even if that lived experience necessarily has gaps with respect to the broad range of lived experiences.

Anyways, the big thing that I think, in response to this article, is that we have to learn to question the ethics and morality of everything we do – even the things we most believe in – more openly, and we have to be prepared for critical moments when it turns out we were doing the wrong thing, and be ready to change in those moments instead of doubling down. And just like we believe that our therapy can become technically better over time, we have to believe there may be ways to make it more moral and more ethical, too, and we have to set both of those goals, not just the goal for technical excellence.

I guess the problem with these none shall pass moments is that we’re always stuck in what we know today, and not what we will know, tomorrow. (source: Wikimedia)

For now, I’m trying to continue standing on the bridge and making sure that therapy is ethical and truly good for kids. I’m doing it for them, and for myself, and not for anyone else, because I don’t think they owe anyone anything. I respect Steph, the author, and her choice to advocate from the outside. I embrace the disagreements we likely have in our philosophy towards autism, and just the fact that our lived experiences are likely very different. I hope that we can both, together with actual autistic people (since that is neither of us) do something to make a world that is better for autistic kids, and autistic people generally, and I recognize that none of us knows precisely what that world will look like, because we haven’t lived there yet. But  I believe, together, I hope, with her, and with all my autistic friends, that it will be wonderful.

* And importantly, I feel I have no say in what those dreams are. That’s none of my business, unless / until someone chooses to share them with me. Certainly, I’m not in the business of telling anyone what their dream is. Although I suspect I’ll live to see my world changed in unimaginable and wonderful ways by them.

** Regarding the use of the phrase “autistic people” – this is something I encourage everybody to read. I’ve heard many people say (and probably said, at some point, myself) some kind of analogy like you wouldn’t say “cancer kids” (actually, people who’ve worked a lot with kids with cancer do, but that’s another conversation). For what it’s worth, autistic people who both use this language and recommend that others use this language recommend it precisely because they don’t think analogies like the one with cancer are appropriate. I used to more navigate the fence between parents, who preferred the “child with autism” language, and self-advocates, but I more and more give in and agree that the self advocates have it right.

*** This isn’t a criticism of Behavior Analysis. Certainly, right now, Psychology as a field (and the roots of Behavior Analysis came from within Psychology, and although many now identify their field as a different, separate field, many behavior analysts also studied psychology as undergraduates) is just visible dealing with the aftermath of a miserable ethical and moral failure. This came in the form of our field’s unwillingness to take a firm stance against torture and our allowing the American Psychological Association’s rules and ethics code to be twisted to condone and even torture. If you don’t know about it, read the Hoffman report.

**** Changes were made, albeit with a “grandfather clause” that allows some people receiving services here to still be treated with the skin shock aversive, although apparently new patients are not receiving this, any more. But that change did not come from organized rage within psychologists or behavior analysts, but from the outside.

***** Look no farther than Dr. Ben Carson, although, for all his many, many, many flaws, he is actually less racially ignorant than many of his rivals in the current Republican primaries.

****** The complex dynamics of survivor guilt play a big part in this discussion, as well, since I am, admittedly, primarily “lucky” (or privileged) to not have experienced these ills.

Utilization Management and Trans Healthcare

This is a quick post – I posted the following comments in response to a post by Trans-Ponder on Facebook. They, in turn, posted an article by Alyssa Jackson for CNN, “The high cost of being transgender.” Since my comment was longish, I wanted to preserve it here on my blog (so, like some other recent posts, this is one of those “too long to just leave as a FB reply” posts).

Let me start by saying that I am unequivocally for a future (1) where a wide variety of trans experiences are embraced, and (2) where transition related healthcare (e.g., therapy, hormones or other medications, and surgical interventions) that some (not all) trans people choose is readily available to trans people irrespective of their socioeconomic status. My basis for a belief in a future of this kind is first, and foremost, because trans people are and have been around for a long time, and society needs to get used to it. Second, transition related healthcare is clearly safe and effective (viz. this and this and this and this and a million other reviews and studies, including the extensive data synthesized in WPATH’s position).

I am, for better or worse, also a healthcare expert, and I’ve been involved in discussions of making changes to reimbursability and enhancing access to services for underserved populations (in my day world of preschoolers with autism – I don’t provide trans healthcare). This doesn’t make me a leading expert in this conversation, although I know many of the leading experts, and I’ve talked with most of them about all this in some depth. It’s noteworthy, to me, as well, that none of them are quoted in this article, and that HRC, NCTE, and other leading voices that have done and synthesized the healthcare utilization research, are not quoted, either, in the context of cost, although relevant voices are quoted in the context of risk, e.g., with respect to suicide in our people.

The CNN article includes some real-world reports of trans people and their healthcare choices, although it only includes examples that appear to be significantly above the typical (e.g., +/- 1SD) spend for transition related healthcare.

The CNN article includes some real-world reports of trans people and their healthcare choices, although it only includes examples that appear to be significantly above the typical (e.g., +/- 1SD) spend for transition related healthcare.

From a healthcare utilization / healthcare sustainability standpoint, there’s a lot of problematic content in this article. The large (it quotes $140,450 for trans women and $124,400 for trans men) estimates cited in the article are for combinations of procedures that almost no patient ever chooses – note that the Philadelphia center cited for this data includes a wide variety of services, including blepharoplasty and rhinoplasty for trans men*. It appears to achieve its totals by literally adding every procedure together, even when these procedures cannot be done in conjunction. For instance, it adds the fee for an upper and lower blepharoplasty to the fee for a single, upper or lower blepharoplasty – this doesn’t make any sense – the second, lower fee is included in the list for someone who needs / chooses to only have one pair of eyelids, the upper or lower, done, and not the other. It likewise, for trans men, combines the costs of three different chest reconstructive procedures that all achieve the same outcome, and likewise, different, alternative bottom surgery procedures for trans men (that is, in each of these respective cases, any given man can do one of these things, but not all of them at the same time).

This is important because the figures cited in this work (which is on CNN, and thus has the potential to garner a lot of attention as well as remain part of the conversation over time) are starkly in contrast with data gathered in a rigorous manner by the people who’ve been most invested in moving us to the kind of future I want. Let’s start with San Francisco, the first US city to offer trans health care to all residents.

Note that the 2001-2006 San Francisco data had methodological limitations with respect to the per claimant spend (that is, they didn’t know how many unique claimants there were across the five year period, because they didn’t know how many claimants had also been a claimant in a prior year), but the reasonable median estimate was around $25k per claimant over five years, and the high estimate was $64k, well below the $75k cap imposed** in that model program. This is consistent with the long-term, multi-source data that converges on the result that the cost per covered life for an insurance plan (or employer) is very low (figures come out at in the neighborhood of $0.17 per covered life), as long as there is a medium or larger group of covered lives. The cost in San Francisco’s case, when they went through the first wave of making access available to the city’s own employees, was so low, that they famously stopped collecting an offset surcharge because they didn’t need the money.

We live in a world where, one way or another, care is utilization managed. I’m all for flexibility that allows for serving rare cases where transition related health costs are very high. More to the point, $25k is still out of reach for a large segment of the population – for instance the recent NYT article from a couple of days ago cites the median net worth of 18-34 year-olds as just $10,400, making the difference between $25,000 or $30,000 total costs and the unrealistic figures purported by CNN really irrelevant to an affordability conversation.

Similarly, when one looks at other successful attempts to systematically change access, such as the success we’ve had providing ABA therapy to children with autism (which I mentioned because I’ve been directly involved, in my small way), family costs of $25,000-50,000 are generally accepted by the public and by legislators as costs that “most Americans” cannot bear. So, we don’t need inflated estimates suggesting that trans people are commonly spending $80,000 or $150,000 on services, to win the coverage we want to see, both because people don’t have the smaller amounts of money, to begin with, and, importantly, everybody gets that.

The contrary risk is simple: the higher we make these costs out, especially when not borne out by data, the more reticent stakeholders will be to make these important changes.

With respect to reasonably feasible alternatives, outside of very large, high profit industries (the kind already scoring 100 on the CEI and already providing access to care), the alternative also, we have to consider, is an alternative that somehow tries to measure “objectively” the basis, e.g., on pre-procedure dysphoria level for the patient, and that kind of gatekeeping is deeply problematic for the trans community as well as for our providers. The last thing we want is a system where trans people have to be miserable (or pretend to be miserable if, like me, they are really happy) in order to access services. But if we walk into this argument citing astronomical cost bases, I am very concerned that this is where we might end up.

As the public, a lot of my friends believe firmly in a “no gatekeeping” model. But, the reality is that medical care provided in a congregate funding model – Medicaid, Medicare, insurance, universal health care systems like NHS, hybrid public/private systems – is gatekeeped in one way or another. Although the reality is that the biggest cost drivers, especially in the developed world, are not things like trans healthcare (or autism or any other area where we’re fighting for access), but “boring” things – note that in this review of nine drivers of increasing American healthcare costs, the only disease / problem / disorder / population centric things that even make the list are “lifestyle” diseases (being gay isn’t a lifestyle disease – this is talking about the effects of things like sedentary lifestyle, bad diet, smoking, etc.) and end-of-life care. Nonetheless, it’s flashier to pretend like extending healthcare to critical, impactful areas like trans healthcare (which can prevent the staggering loss to suicide in our population and which clearly provides improved quality of life) is the problem. And this is politics – it isn’t about what’s right, but about what’s perceived.

So let’s tell our story clearly, and not misrepresent our situation in a way that reduces our likelihood of getting the help we need.

*  I don’t even know an example of someone choosing those procedures as part of transition, for instance, as a trans man – I’m not saying it isn’t done, but I’ve never met a trans man who had these procedures done as part of transition, and I have been paying attention, both so that I am generally a better advocate and an ally, and of course because I am rather engaged to marry a trans man, myself.

** In fairness, it is worth noting that median and mean figures belie ranges. They are still important – because when you are looking at large groups of insured people, one must estimate actual costs in a given year across the entire population, and these costs can be used to effectively make these estimations. The range does vary, and this is important with respect to how these access policies are set up. And back to fairness, one should note at this point that San Francisco initially capped services at $50,000 and then moved the cap up to $75,000.

Our Model of Suicide and Maintaining Mental Health Stigma

This is one of those short posts that started life as a comment on someone else‘s timeline on Facebook. My friend, Tania*, asked for people’s thoughts about the idea of legalized euthanasia, suicide, and/or physician assisted suicide. Her questions follow this article from the NYT last weekend.

Anorexia is my personal experience, but it's also relevant to me because there is so much policing around the expression of and fear around the honesty of us as women who are there (and to a lesser extent who were there) Source: @daniellehelm on Flickr

Anorexia is my personal experience, but it’s also relevant to me because there is so much policing around the expression of and fear around the honesty of us as girls or women who are there (and to a lesser extent who were there, and of course, of the men who’ve been there, too) Source: daniellehelm on Flickr

There was one book**, back when my struggle with anorexia was much more active, that was about a young woman who did eventually die (passively) – the young woman made an argument that, in her case, anorexia was terminal. Her argument was based on her experience trying a wide variety of both outpatient and inpatient treatments, and getting progressively sicker. It was a pretty sophisticated argument – it wasn’t a simple brinkmanship kind of argument. The anorexia world is full of these stories of people who drop down to unimaginable weights – like a person who weighed 120-130 lbs dropping all the way down to the sixties – who go on to survive and thrive. Marya Hornbacher is just the most widely celebrated of these stories***. But the young woman… well, actually, it wasn’t her making the argument – if I remember correctly, the book was written by her surviving father, who was telling her story, bravely even including her feelings about the terminality of the illness. Again, if I remember correctly, he didn’t necessarily agree wholeheartedly with what his daughter said, but he had given it deep thought, and he had come to the conclusion that it could not be cursorily written off (as many people are wont to do – for instance just cursorily saying the young woman in the NYT story shouldn’t be “allowed” to “choose” suicide). And, importantly, he recognized that he did not understand the illness like she did, because he had been there as an observer, but the battlefield had been her body.

As survivors (and proud of it!) we know an elemental joy of surviving that you, who have never survived, may not be able to understand. But in having survived, we come face to face also with the knowledge that our survival was not guaranteed, and if we take pride in our survivorship, that pride must recognize the sisters we lost. Source: @Rega Photography on Flickr

As survivors (and proud of it!) we know an elemental joy of surviving that you, who have never survived, may not be able to understand. But in having survived, we come face to face also with the knowledge that our survival was not guaranteed, and if we take pride in our survivorship, that pride must recognize the sisters we lost. Source: Rega Photography on Flickr

What’s important about this view is also that she was not saying that all people who are suicidal should end their lives – people who find this to be their solution are not saying, for instance, that no suicide prevention work should be done, or even that our efforts to prevent suicide should not be intensified. Rather, they are merely saying that an expectation of survival of their illness may not be reasonable.

I read this book more than ten years ago, and so it’s taken me a long time to evolve how I think about this. But, what stuck with me for a long time is that, when we talk about diseases and disorders that affect things other than the emotional brain, there are many, many things that don’t have a 100% survival rate. My fiancé had leukemia twice – he survived, and I am thankful, but we accept that a minority will not. For all kinds of leukemias integrated together, the five year survival rate is now just over 60%, meaning we accept that almost four in ten will not make it. Death may not have been a certain outcome in Teri’s case, but neither was life a certainty. If one ignores whether death was “one’s fault,” then the reality is that several mental illnesses – anorexia is one of them – have known rates of mortality. Anorexia is one of them.

When we talk about mental illness, there is not nearly often enough the kind attitude of survivorship mixed with pushing us all to do more, be more clever and resourceful, to help more people survive. My experience, anyways, is that this attitude is very different when talking about a non-mental illness that might take one's life vs. a mental illness that might take one's life. Source: A Leukemia and Lymphoma Society Light the Night Cancer Walk, Dave Overcash on Flickr

When we talk about mental illness, there is not nearly often enough the kind attitude of survivorship mixed with pushing us all to do more, be more clever and resourceful, to help more people survive. My experience, anyways, is that this attitude is very different when talking about a non-mental illness that might take one’s life vs. a mental illness that might take one’s life. Source: A Leukemia and Lymphoma Society Light the Night Cancer Walk, Dave Overcash on Flickr

In contrast, we assume – without a clear basis other than that we believe that people are responsible for their mental illness in a way that people are not responsible for their physical illness – that mental illness cannot be terminal (maybe, excluding dementias, although I think we mostly consider dementias neurological and not psychiatric).

That basis – the belief that people are responsible for their mental illness – is a deeply problematic one for a variety of reasons. The fact that psychotherapy can help people help themselves feel better really does not validate that idea – all manner of disorders and diseases are amenable to behavioral “treatments,” not just mental illnesses. Schizophrenia is not only significantly more heritable than, say, hypertension (compare this and this), but although both are amenable to behavioral treatments, behavioral treatments (like weight loss, diet, exercise) have higher effect sizes by far for hypertension. Infectious diseases are not given the stigma of mental illness based on one’s having “chosen” the illness, even though they are clearly essentially completely behavioral, whereas almost no mental illness is considered completely behavioral by scientists****.

The result is that, when we think about some other health problem, that has a death rate, we assume those deaths might be preventable, if we get cleverer and come up with new technologies and new medical practices and new ways to help people with prevention. In contrast, when we think about suicide, we assume that those deaths are preventable, and that nothing needs to be done to prevent them except to coerce people to not commit suicide, to call people who commit suicide cowards, to criminalize suicide, etc. To me, that’s deeply problematic, whether or not one believes one should be able to “choose” suicide.

Moreover, it should be deeply problematic to everyone who is trying to reduce / prevent suicide, as well. It pushes suicide into a deep taboo. And it’s hard to treat something that’s taboo. And, of course, it’s deeply problematic for people with mental illness even when suicide is not a part of the conversation.

So, to me, do I support the policy Belgium enacted? I probably do. But the thing I support far more firmly is destroying stigma around mental health. I believe in it for me. I believe in it for all the friends with eating disorders who saved my life, time and time again, ten years ago. And I believe in it for all my friends who live with mental illnesses that I haven’t experienced in the way I experienced anorexia and so don’t fully understand.

I believe in it for all of you, too, who have never been there, and so who find it easy to pass judgment. At times, I yearned to be back in your blissfulness of ignorance, although today, I include my experience with anorexia alongside all the many things I am thankful for in my life. It made me the woman I am today. I am glad – daily – to survive, all the more because I know my survival was not guaranteed.

* God, what is it with me, I can’t even get past the italicized intro without a footnote. Just pausing here to say that Tania is such a heroine for the AutismFamily. Her particular passion is autistic (she coins “Aspien”) girls and women, and I love her work so much.

** Comment or message me if you know the book. I think it’s one I borrowed from the Jacksonville Public Library, the summer before grad school in psychology, which was the time of my rock bottom with respect to my own struggle with anorexia / disordered eating.

*** And I’m sure I’ve mentioned before how much of a heroine Marya is, and how amazing it was to, if only for a moment, meet her when she was here to speak.

**** Getting overly technical, susceptibility to a wide range of infectious disease is heritable. But again, the heritability of many mental illnesses is far higher than the heritability of many infectious diseases, if not most/all of them.

HIV And The LGBT Community: Getting My First HIV Test… And Some Education

Here I am with, with Kevin Gierman of the Red Project. See how easy it was? If I can do this, you can do this.

Here I am with, with Kevin Gierman of the Red Project. See how easy it was? If I can do this, you can do this.

Okay, let me dig deep and make an admission. As an LGBTQIA+ person, I’ve never had a formal HIV test.* You’d think that, also, as a healthcare provider, I would be more likely to have done this. But no. I’m pretty solidly aware of the risk factors, and I know the risk calculus of my own exposure likelihood pretty well, but I haven’t ever had testing confirmation. *Taylor Swift voice* Like, ever.

My organization, The Network, shares a building with The Grand Rapids Red Project, Grand Rapids’ leading HIV advocacy organization.** And yet, we don’t talk much about HIV at the Network, outside, of course, of talking about HIV and gay men. And I have to admit, I knew that HIV happens to a lot of people other than gay men, but I didn’t know a lot about some of the other risk groups. It’s kind of embarrassing. Before I started transitioning, and started learning the facts, for instance, I didn’t know that the risk of HIV infection is estimated to be almost fifty times higher in transgender women*** than in the general population. Fifty times.

The origins of this are complex, but they don’t simplify to wealth or regionality – the rates are shockingly high even in wealthy countries, including here in the United States. Those numbers are a little unclear, in part because of things like studies historically considering us a wide variety of strange things (like considering trans women as automatically falling in the men-who-have-sex-with-men category, in some cases barring us from giving blood for this reason, #no), with national estimates quite possibly around 20% in trans women (meaning one out of five trans women would have HIV), and in some high base rate regions like San Francisco, where the trans population also tends to drift, maybe even 35-45%. 10%, 20%, or 40%, though, these are insane numbers. And I don’t want to just call out The Network (without betraying anyone’s confidence, let me just say that HIV is not a topic of conversation that I can recall ever coming up at our trans group) – I’ve been now to two national trans conferences, First Event and Southern Comfort, and the only discussion of HIV testing I ever hear is that many surgeons do a rapid HIV test before surgery.****

I’m an intersectional feminist (and a radical feminist, and proud of it) – and the evidence backs me up. It’s pretty likely that multiple marginalization is a big contributing factor – living in a high-wealth country doesn’t protect you from HIV, but living poor in a high-wage country puts you at higher risk. Underrepresented ethnic minority status (which may not just mean being a “person of color”) confers risk, statistically. And exposure to drugs, commercial sexual exploitation (and I do mean exploitation, this is not a SWERF narrative), and other factors increase risk. So, it’s quite possible that someone like me does have somewhat lower risk (I do, actually, know about what does and doesn’t put me at risk), but it’s also quite probable that the reason that Southern Comfort Conference doesn’t talk about HIV is that the rate of HIV among SCC participants is actually much lower than the global HIV statistics among trans people. Quite possible. And quite unhelpful. And quite scary, since, probably, like me, most of them didn’t know, at least for sure.

So what are the recommendations? Currently, the US government, amazingly, recommends only yearly screening even for high-risk populations, but local experts like Kevin are recommending yearly tests even for monogamous heterosexuals (since, well, sadly, you never know what your partner might be doing) and quarterly testing for target populations (people who have unprotected sex and/or multiple partners, people who use injectable drugs, and a few other categories, for instance, infection with herpes simplex virus, which is very common and can be asymptomatic, is known to increase HIV risk). I find this really interesting. Kevin told me that Red Project is really one of the primary providers of screening in Grand Rapids (many others refer to them, and they have a number of contracts that make them the “go-to” provider from certain referral sources), and they plan to do around 500 tests in 2015. This is a significant increase from 2014 (about 20%). But…hmmm… okay, you know the girl has taken a few math classes here and there (insert trope about women not being able to do math). Sexually active adults, even if they’re monogamous, need yearly tests… and Grand Rapids has a city population of almost than 200,000. And, erm, you know the suburbs are coming to the city for this stuff. Doesn’t that mean tens of thousands of HIV tests should be happening in Grand Rapids yearly?

Kevin and I got to be on a panel for GVSU’s Student Nursing Association a few weeks ago.***** When I got tested, I got to follow up with Kevin on this topic. Back at the SNA presentation, I had opined (potentially, somewhat ignorantly) that I just didn’t see the recommendations on HIV testing frequency happening unless one of the primary sources of testing was at the annual primary care visit (or with other primary providers, such as OB-GYN’s, since many women really rely on them as their PCP’s, in effect). Kevin has a valid point. The biggest problem is that PCP’s and their staff are really not equipped to deal with the intense feelings, fears, questions, and uncertainty that would arise from positive testing results. And a lot of the people who get routine tests with Red Project tell them that they really don’t feel a comfort level at their PCP. Also, anyone who’s gotten follow-up recommendations from their PCP and felt like they slipped through the cracks will wonder how well aftercare can happen with that setup. Kevin and his team, in contrast, get you set up with care very, very quickly, and they hold your hand (literally – they come to the first meeting with you) into care. Kevin’s got great points – there need to be other kinds of options, and particularly ones that make LGBT people, women, and ethnic minorities feel more comfortable. But I do think PCP’s need to be a part of the mix – I’ll go anywhere I need to go, but I know that I’ve been going faithfully to my PCP annually, ever since I became sexually active (and before), and it’s a problem that the best HIV counseling I’ve ever received from them is what I wrote in the first footnote. Truth is I should have been streamlined into yearly testing (which is probably a good fit with my risk category, overall), but just like a lot of the rest of you out there, I wasn’t.

Okay, so that’s a lot of politics. So what was the actual experience of getting tested like? Well, it was nice. Kevin was great (we’re just getting to know each other, but I think he’s kind of fab, anyways). The interview questions raised lots of questions… my life is a little complicated. For instance, I’m a woman, and although I have a stable partner at the moment, whether I’m a woman who sleeps with women or men is a little bit in flux right now (hint: get ready for a Mira Goes Way Het blog at some point). But I have (not trying to be non-PG-13 here) been with women… erm… well, in the way that men are with women. Anyways, it turns out that, far from not thinking about trans women, the screening instruments really view all queer women as a bit of an afterthought, here in Michigan, at least. Some of us might be at lower risk, although there is at least limited case history of female-to-female transmission. Kevin already knows to be pretty trans (and everything else) friendly, and I’m no shrinking violet, so I didn’t feel too awkward. It was more of an interesting discussion (starting with me just simply identifying myself as female, since I didn’t notice there was a transgender option – Michigan only allows one thing to be selected, though, and of male, female, and transgender, you kind of know I’m going to be choosing female). So, there was a short history… the kind of stuff you should be telling your physician (*cough* *cough* people, start telling your physician this stuff, they need to know). Told here, as it would be at your doctor’s office, in confidence. But I would plead with trans people – don’t be scared away from HIV testing… you’ve had the chutzpah to start coming out to people, to live authentically, you got this.

After that, they use a finger prick and blood-based test. It takes just a few minutes to do the actual test. It’s like a pregnancy test, except I’m not allowed to pee on it (and, sadly, I already know what the pregnancy test is going to tell me). The test looks for an antibody reaction. There is a prior phase in which there are not yet, antibodies, but there are antigens, and there are tests that are starting to roll out that test for that. But what this means is that, if you’ve had a new exposure to HIV recently, and recently in some people can be up to 12 weeks, then it might not detect it. This is most of the reason why high-risk people should get HIV tests every three months (which seems eminently reasonable, unlike the CDC recommendations, which seem way too loosey-goosey to me). They do a second test if the first test is reactive (that’s positive, or it means you have HIV antibodies in your system), but they go ahead and set you up with follow-up care in the meantime, because time is of the essence (and we already know that people who do things like get tested, especially if they don’t do them routinely, are in a time-critical window of action – making them wait significantly increases the chances they will just convince themselves they don’t need to do anything). They give you a piece of paper with your results.

This is an innocuous looking piece of paper. Folded in half. What you can't see, on the inside, is the result of my HIV test. It's my business. It's Teri's business. It's my doctors' business. That's about it.

This is an innocuous looking piece of paper. Folded in half. What you can’t see, on the inside, is the result of my HIV test. It’s my business. It’s Teri’s business. It’s my doctors’ business. That’s about it.

This is one more little bit of politicking. A lot of people post these pieces of paper on the internet, like on Facebook, or they tweet that they’re HIV negative, or whatever. The nice part about this is that they are raising awareness of getting tested. The bad part about this is that they’re putting HIV positive people in a tricky situation. If we LGBTQIA+ people are just getting used to the idea of being out, we should be able to understand the basic premise that being out is deeply personal, and we do not “out” other people without their permission, or make them feel ashamed of not being out. And what, pray tell, is the point of coming out HIV negative? It’s like coming out as straight (no, you still can’t have a letter in the alphabet******, and no, I’m not coming to your straight parade). So, I’m not going to tell you (much like I respect Laverne Cox’s decision not to talk to you about her downstairs parts). I’ll simply say that I know it. My partner knows it, too. I haven’t seen my doctor yet, but I’ll be happy to tell her. And that’s the point. Those people need to know about this. And now we do. I mean, look. We’ve got enough reasons to be mourning our dead at Transgender Day of Remembrance every year. HIV kind of doesn’t need to be yet another one.

* Okay, this is real Mira back in the house, and you know I bring my footnotes. I actually had a physician at the University of Chicago – not a resident, but I saw the actual professor overseeing the residents – tell me that, since I’d donated blood, I had a de facto HIV screen (footnote within a footnote, this was back, obviously, before I came out – but actually, policies surrounding whether trans people can give blood are more than a little unclear, as you’ll see back above, later in the story).

** Kind of embarrassingly, before I came in and started Miracizing the place, we haven’t always had the warmest relations… to me, it’s kind of embarrassing for the LGBT community center to not be the most vocal supporter of the HIV organization. I mean, we’ve got a lot of fights, but this is one of them, for sure. Like I said, though, I’m working on that.

*** This isn’t a funny footnote. I say trans women – the CDC looked at NYC HIV data – of transgender HIV cases between 2007-2011, 99% of them (essentially all but two) were trans women. Of course, trans men, genderqueer, and gender fluid people face many of the same risk factors, and in some cases can be at higher risk (for instance, my medication is all oral, and if I did need needles, I know how to get them safely, but trans men who share needles, for instance, for testosterone injection, would be at pretty high risk).

**** I don’t want to ignore the fact that my people are pretty oppressed, but people dying of HIV is just not more important than my access to bottom surgery. For serious.

***** In the middle of a November snowstorm, I might add. But we’re fierce queers, we don’t miss stuff. And they were fierce nurses, and they were out in force.

****** I don’t get a letter if I land back in heteroville, either. But I’m keeping my claim on the “T.”