Friday, October 25, 2013

Keynote Speech

Keynote Speech for Community Healthcare Network
3rd New York Transgender Health Conference:
Transgender Care and the Universal Right to Health

Joann Prinzivalli – Challenging Assumptions

We are living in a period of societal transition in Western culture – in which the fundamental understanding of certain assumptions about reality are being challenged. 
There have been other times, and other issues –
For many years, people believed the earth was flat and the sun traveled around the earth. 
In 1633, the Italian scientist Galileo, who saw the workings of orbital mechanics with his own eyes by using a telescope, was condemned to spend the remainder of his life in house arrest, by an Inquisition tribunal consisting of a number of Cardinals of the Roman Catholic Church, primarily because he had the temerity to advance the Copernican heliocentric theory of cosmology over the traditional Church-approved Ptolomaic geocentric theory of cosmology. 
Under threat of a painful execution, Galileo recanted the material from his book, which allowed the Inquisition to spare his life - but there is a possibly apocryphal story that as the Inquisitors left, he muttered "Il pur se muove" (It still moves!) under his breath.
It took 359 years before the Roman Catholic Church formally rescinded the condemnation of Galileo, On October 31, 1992, after a lengthy inquiry that Pope John Paul II set in motion in 1979. 
Even though we may still poetically refer to the beauty of a “sunrise” or a “sunset” we, or at least most of us, Flat Earthers excluded, actually now know the earth is round and that it is the earth that orbits the sun, and not the other way around.
For many years, Western culture classified animals in accordance with the book of Genesis – if it flies, it is a bird, if it swims it is a fish.  This was challenged by the early 1800’s – and there is a celebrated 1818 New York court case, Samuel v. Judd, which pitted the testimony of preachers and whaling captains against that of the most famous naturalist (i.e. scientist) of the day - and even with all the testimony, the whales were still held to be fish, despite the scientific evidence to the contrary Luckily the state legislature changed the law to make it clear that the tax on fish oil did not apply to whale oil.
Moving forward to 1920, the issue that of rocket ships.  The august New York Times opined in an editorial that Robert Goddard was wrong in asserting that a rocket could travel to the moon - - the editorial writer wrote that Goddard “… does not know the relation of action to reaction, and of the need to have something better than a vacuum against which to react…. Of course he only seems to lack the knowledge ladled out daily in high schools.” since "every schoolboy knows that in space there is nothing to push against"  To its credit, 49 years later, in 1969, when humans landed on the moon, the Times quietly printed a retraction.
And speaking of the New York Times, we can move forward to 2006, when in what was supposedly a news story, the New York Times libeled me by referring to me as “a man who has lived as a woman since 2000.”  Apparently, in 2006 the New York Times was still behind the times, lurking in the quaint understandings of a bygone era, much as it was in 1920 about space travel.
Moving back to 1965, we can see what era the Times was stuck in - The New York City Department of Health assembled some of the leading lights in the medical field in a “blue ribbon” commission to study the nature of transgender people, which came to the conclusion that transgender people are delusional members of their originally-assigned sex, and for whom any treatment is merely "palliative" (i.e., doesn't really do anything except make us "feel more comfortable").
Scientific studies from 1995 to date tell a different story.
In studies that were reported in 1995 and 2000, it was reported that there are significant structures in Trans brains that are different from those of members of the sex they are assigned at birth, and similar to those of the "opposite" sex.
In the last decade, we learned that there are genetic predispositions for embryological development in which the brain develops in one sexed direction while the genital tract develops along the other sex's lines. So when trans people are born, we really do not belong to the originally-assigned sex.
In 2008, two separate studies from Australia established separate genetic predispositions for different kinds of transgender development.
In one study, the predisposition for those who develop with female-identified brains and male genital tracts was shown to involve a long androgen receptor gene
The other study,aimed at those who develop with male-identified brains and female genital tract development, was entitled A Polymorphism of the CYP17 Gene 
These studies, the earlier brain structure studies from 1995 and 2000, and numerous other reports, provide clues to the ontological developments that result in transgender people. While there is much additional study required, these studies make it possible to discredit the primitive “brain as Skinner-box” understandings of transgender people that dates back to the time of that 1965 blue ribbon commission.
The reality is that trans people do not fit into a single narrow definition - since the most likely causation is rooted in one or another genetic predisposition, and not an “on-off” switch, working in conjunction with other factors affecting the ontological development of the embryo and fetus, it may explain why there is a diversity of trans experience.
We are arriving at a point in Western history in which there is a greater but not yet universal realization that "biological" includes the ontological development of the entire person and not merely the genitalia, and that genetics does not stop at the gross shape of the 23rd chromosome pair, but also delves into a number of genes and their expressions (the coding for the creation of enzymes, telomeres, cell receptors, etc.), and the probabilities of developmental paths that vary in one way or another from the binary expectation.  
Once society gets the science, then it might be time for us to gain a greater understanding of semiotics - the deeply esoteric study of the understanding of understanding, and the meaning of meaning.  I would recommend Umberto Eco's Kant and the Platypus to anyone who wants to get a grasp as to how people's perceptions are affected by improvements in knowledge.  It is a messy process, and it is neither instantaneous nor universal.  After all, some people still do believe in literalist young earth creationism, and that the moon landings were a hoax because the earth is flat. 
My assertion is that we who are trans are born *different* - we do not belong to the initially-assigned sex ab initio, even if we also may not at that time be properly assigned to the other. Since birth records are based on the simple expedient of the observation of infant external sex characteristics, it should be made easier to amend and correct the records once the reality is ascertained. I do believe that it should be possible for society to evolve to accept a diversity of sex assignment. Of course, since the "reality" in which we currently live does still have a strong binary-sex assignment bias, many of us, particularly those of us who are over a certain age, strongly identify with the binary sex not assigned at birth.
I cannot predict how an evolving societal perception of reality will affect those who are born into a society in which (one could postulate) trans-kids are accepted as being different. Leslie Feinberg might, if born in today's world, grow up to identify as genderqueer.
The fact that we are born different does not mean that trans people are all different in exactly the same way, or to exactly the same degree.
Being different in a binary-sexed world is a challenge.  My birth certificate calls me male, even though I know that is an error.  My driver’s license calls me female, because I fit into the New York DMV’s definitions for women.  I can get a passport that says female, and I can now have my social security records reflect that I am female.
That leads to a conundrum – up until now, I’ve had to deal with health insurance in which I am expected to fit one or the other of the binary expectations of sex, even though my trans body doesn’t fit entirely into either Column A or Column B.
If I was classified as “male” my medical insurance would cover prostate screenings, but not hormones – classify me as “female” and I get the HRT, but have to get anonymous PSA tests at a free clinic.
Having my driver’s license identifying me as female, and having more of a need for HRT than for a rare prostate screening, I am listed as female on my health records – which comes with a periodic reminder from a well-meaning insurer that I am overdue for my pelvic exam and pap smear.
What trans people need is medical care and medical coverage that is designed to treat us with dignity and respect, and that rather than denying us coverage based on arbitrary decisions as to what comes under Column A, and what comes under Column B, we are able to get tested and treated for those items from both Column A and Column B that apply to our bodies.
And yes – some of us actually do need a periodic pelvic exam and pap smear as well as a PSA test.
The time of the either/or coverage may be coming to an end under the Affordable Care Act – there are twoc ritical sections of this law that have, or should have, a bearing on transgender health care:
Affordable Care Act §1302 requires consideration of “diverse segments of the population” in the design of the Essential Health Benefit standard. This provision is intended to help fulfill the Affordable Care Act’s goals of reducing health disparities and expanding access to adequate insurance coverage, especially for populations that prevailing practices in insurance markets frequently marginalize.
ACA §1302 also prohibits Essential Health Care package designs that discriminate against individuals on the basis of factors such as disability. Though the statute directs this requirement at the Secretary of Health and Human Services, any scope and duration limits included in state-designated essential benefits packages will be subject to review by the Department of Health and Human Services, which effectively extends this requirement to the states as well.
Even though the New York State Medicaid Regulations in effect since 1998 prohibit hormone and surgical care for trans people, neither the Affordable Care Act nor any New York statute excludes Gender Dysphoria or related conditions from the term “disability.”

This indicates that GD and related conditions may be seen as constituting a disability under the law, subject to the same requirements as other conditions.
Arbitrary condition-based exclusions such as those targeting transgender people represent exactly the kind of discriminatory barriers to coverage and care that the ACA was designed to eliminate.
The 2011 Institute of Medicine report on the essential benefits clarifies that Congress intended “to ensure that insurers do not make arbitrary and discriminatory decisions based on certain characteristics of people rather than assessing the individuality of each case when making medical necessity decisions and applying clinical policies.” Fully implementing the law’s nondiscrimination mandates thus requires reasonable restrictions on condition-based exclusions in the context of the essential benefits.
The other section that bears watching is the provision calling for Nondiscrimination on the basis of sex and gender identity: ACA §1557 and federal regulations regarding the establishment of exchanges and standards for eligibility and enrollment in qualified health plans
ACA §1557(a) prohibits discrimination in any health program receiving federal funds or by any entity established under Title I of the Affordable Care Act, including the exchanges. This provision references the protections of several federal civil rights laws, including Title IX of the Education Amendments of 1972. Through this law, §1557 incorporates nondiscrimination protections on the basis of sex. Recent interpretations by federal courts and executive agencies indicate that such sex-based protections cover transgender people through an interpretation of the term “sex” that includes gender identity and nonconformity with sex stereotypes.  In particular, the U.S. Equal Employment Opportunity Commission recently issued a formal ruling that gender identity discrimination is per se sex discrimination.
Further, regulations issued by the Department of Health and Human Services in March 2012 explicitly prohibit discrimination on the basis of gender identity in all activities of the exchange, as well as the activities of qualified health plan (QHP) issuers with regard to their QHPs.  Accordingly, QHP issuers are prohibited from offering QHPs that discriminate on the basis of gender identity by denying transgender consumers coverage for services that are covered for nontransgender consumers.
Notwithstanding the fact that the ACA seems to prohibit discrimination, we’re already seeing discriminatory practices popping up.

In a Huffington Post piece and at a White House briefing on the topic in September, Secretary of Health and Human Services Kathleen Sebelius claimed that Obamacare will address these problems, specifically in the areas of discrimination, lower premiums, and pre-existing conditions like HIV/AIDS, cancer, and mental health.
"We've also taken action to strengthen the civil rights provision in the law, by clarifying that the new law's prohibition on sex discrimination includes discrimination based on sex stereotyping, and on gender identity," Sebelius wrote.
BUT in at least two known cases, trans women have been denied free mammogram screenings under the ACA because of misguided guidelines from the Centers for Disease Control guidelines that ignore the statute and limit free mammogram screenings to women who are “genetically female” - Whatever that is supposed to mean – “genetically” ought to include those women of trans experience with that long androgen receptor gene, as well as anyone with a similar predisposition that is as yet undiscovered.
Separately, a New Jersey transgender woman, aged 44, also had to fight for a mammogram for breasts that developed from hormone therapy, the New York Daily News reported.
In that case, the Transgender Legal Defense and Education Fund helped the transwoman get the screening — and an apology from Aetna, the insurer. Previously, Aetna denied the mammogram because it fell under policy exclusions for treatments related to “changing sex”
Section 1557 of the Affordable Care Act prohibits discrimination in health care programs on the basis of race, color, national origin, sex, sex stereotypes, gender identity, age, or disability.  This is the first time that federal law has prohibited sex discrimination in health care.  Health insurers, hospitals, the health insurance exchanges, and any other entities that receive federal funds are covered by this law.  It became effective upon passage of the ACA.

While it will still require a continuing struggle, we can make a difference as society comes to grips with an improved understanding of the nature of reality – one that includes trans people as people entitled to dignity, respect, and fair and equal treatment.