The Trans POC Lawyer Who Made Trans Healthcare Legally Accessible
The medical treatment that some transgender people need to survive has been difficult to access due to anti-trans stigma in healthcare. As a result, the trans population has disproportionately high rates of illness and death, with more than double suicide rates compared to the general population.
Most insurance plans and government agencies have an exclusion for trans-related care, even though the American Medical Association and government medical boards have deemed it medically necessary.
One lawyer in Massachusetts single-handedly changed the system and gave more than 1.2 million trans folk across America access to transition-related care.
Shiona Heru is an artist and lawyer who was born in Scotland to a family of doctors, their father a general practician from Trinidad, and mother a psychiatrist from Scotland. Growing up, Shiona split their time between Scotland and the U.S. They witnessed the disparity in healthcare — Scotland having a universal healthcare system (NHS) and the U.S. having a mix of public and private, for-profit and non-profit insurers which prevented a lot of people from accessing care. They saw how their family of doctors in Scotland were able to catch patients’ health problems early on, whereas in the U.S., their parents treated patients in much more extreme states, having had less access to doctors when problems first originated.
In the U.S., Shiona’s parents subscribed to magazines like the Psychiatric News which were part of the breakfast table throughout their childhood. Initially drawn to the abstract art that would accompany articles, Shiona read them cover to cover, having no idea that the substance of these surgical and psychiatric updates would play a crucial role in solving one of America’s greatest health crises of all time.
As a child and adolescent, Shiona's mom (Alison Heru, former Interim Chair of Psychiatry at the University of Colorado at Denver) would take them to the American Psychiatric Association conferences. Shiona would put on their mom’s identification badge and sneak off to lectures, even raising their hand to ask questions.
Shiona attended the Rhode Island School of Design and Brown University for their undergraduate studies. At 27, they enrolled in law school at Western New England University School of Law, a safe haven for many top-notch LGBTQ+ lawyers, where they studied under Jennifer Levi and graduated with a concentration in Gender and Sexuality Law.
While in law school, Shiona received a position in the legal department of the quasi-public/private government agency in charge of healthcare for over 400,00 Massachusetts residents. There, they discovered the Massachusetts law being used to insert blanket exclusions in every health plan handbook, disallowing the coverage of transition-related care — deeming it “experimental or research related.”
Shiona brought the issue to the attention of the agency and was given permission to investigate it.
Shiona spent the next four years embarking on a third field of study in which they had no previous knowledge: cost-effective analyses. With no special math background, Heru learned how probabilistic sensitivity analyses worked, learned TreeAge, a software program that statisticians use. They then invented a new Markov model and published a ground-breaking study in the Journal of General Internal Medicine: "Societal Implications of Health Insurance Coverage for Medically Necessary Services in the U.S. Transgender Population: A Cost-Effectiveness Analysis.”
Once the study was published, the agency removed the healthcare exclusion, thus giving Massachusetts residents under Medicaid, Medicare, and MassHealth, access to trans-related healthcare.
So, how did Shiona do it, and why did no one figure this out before them?
Shiona’s unique understanding of how the human body and brain operate together, in conjunction with their visual art skills, and their knowledge of gender and sexuality law, gave them the unique perspective needed to invent a new cost-effectiveness model. Heru enlisted their colleague, health economist Bill Padula, to teach them how these models work.
Shiona took the Markov model, which had previously been used to determine outcomes for health conditions such as heart failure, and turned it into a new, more complex model that analyzed several factors and probabilities that were never previously paired together.
Drawn like a sideways tree growing from the left, the model starts with a hypothetical trans patient. It then looks at the most common outcomes for that patient.
Normally the second branch, or “arm” of the model, is used to list the possible medical care or “intervention” a patient might get. It normally compares a more expensive treatment with a less expensive one, looks at all the possible outcomes, assigns a “Quality of Life” number, cost, and probability to each health state, determining which outcome is the most cost-effective.
Instead of using the second arm for the treatment variable, Heru adapted it to look at two factors: Does the patient have provider coverage for trans care, or not? This was the first step to transforming this Markov model to suit the unique circumstances of the transgender population.
The model goes on to list the possible outcomes of each situation, combining factors that had never before been combined in a CEA including life circumstances, mental health, and physical health. It makes some safe conclusions supported by the data: that patients without healthcare lost their jobs, and that people who lost their jobs experienced depression. The use of these determinants is part of what makes the model a work of genius.
The fourth level of the model looked at all the potential outcomes of those health states. For example, when a trans person lacks a job and does not receive medical care, several things can happen. Either they stay the same, which is referred to as a “baseline” state, or they get worse. Getting worse can take many forms, but Heru narrowed it down to the five most common outcomes in the trans demographic: depression, suicidality, HIV, drug abuse, and death.
The bottom of the model explores the potential outcomes for patients who do receive care: either they get worse (escalated state) or they get better (successful endpoint).
The fifth and final arm looks at just three final possible outcomes: escalated issue, successful endpoint, or death.
Once they completed this new usage of the Markov model, Heru assigned a probability number to each arm. As very little data about the trans population existed, they spent years calling hospitals around the country to get missing data.
Finally, Shiona put the probability numbers into TreeAge that analyzed the potential outcomes 10,000 times in what’s called a Monte Carlo simulation.
Using this simulation, represented by 10,000 dots on a plot graph, Shiona proved that, not only does the quality of life almost double when patients are covered, but it costs each taxpayer only .06 cents a year. Ultimately, provider coverage saves money because fewer dollars are spent treating HIV, depression, and suicidal ideation.
This proves that conventional assertions regarding the cost of trans people are simply unfounded and solely based in medical stigma and social discrimination — at a huge cost to the general population.
Shiona’s study is being used as a basis to prove that trans healthcare is cost-effective not just in Massachusetts, but everywhere across the globe. It has been cited nearly 80 times by top medical journals and used across the U.S. by individual trans folk who appeal health insurance denials. Recently, it was used by the US Department of Defense when they challenged Trump’s ban on trans people serving in the military.
This model is a breakthrough in science, technology, and medicine. Shiona’s method can be applied to many other fields in which money isn’t being adequately used to serve a demographic. Their use of the Markov model extends beyond the trans population and will lead to saving many more lives.
Press: To contact Shiona, email info@qwearfashion.com
