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.

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.