Sex and Gender Identification and Implications for Disability Evaluation (2024)
Chapter: 1 Introduction
1
Introduction
The U.S. Census Bureau (2022) estimates that 44 million Americans (13.4 percent of the U.S. population) have a disability. However, only about one-third of these Americans (15.1 million as of December 20221) meet the rigorous medical and other criteria for receiving disability benefits from the Social Security Administration (SSA). Despite a more limited definition of disability, SSA’s programs are an important safety net for all Americans, given that “a young person starting a career today has a roughly 1-in-3 chance of dying or qualifying for [disability] before reaching Social Security’s full retirement age” (CBPP, 2023, p. 1). SSA disability programs are especially significant for severely disabled Americans, as chronic illness can have devastating economic consequences for those unable to work because of their condition(s) and health needs.
Given the limited resources for providing income support to Americans with chronic disease and disability, the criteria used in SSA’s disability determination process need to operationalize its definition of disability as validly as possible, consistent with the best scientific evidence. Over the years, SSA has sought to bring greater accuracy to its disability criteria by updating its Listing of Impairments (Listings) (medical criteria that apply to the evaluation of disability) to recognize advances in medical technology and alternative medical criteria that are more appropriate to disability evaluation for certain populations. In June 2023, for example, SSA revised
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1 As of December 2022, 8.8 million people received disability benefits from the Social Security Disability Insurance program, and 6.3 million received Supplemental Security Income benefits, qualifying for this program as a result of meeting disability criteria (SSA, 2023a,b).
its medical criteria for evaluating chronic liver disease by adding another type of measurement (serum sodium levels), which research shows offers a clearer assessment for individuals with certain liver conditions (SSA, 2023c). Likewise, in 2016 SSA added measurement of CD4 count to its HIV Listings to allow for clearer assessment for certain populations with HIV, and in 2022 it proposed revising its criteria for measuring congenital heart disease to recognize advances in medical technology that allow for more accurate measurement (SSA, 2016, 2022).
Over the years, SSA has asked the National Academies of Sciences, Engineering, and Medicine (the National Academies) to convene experts for the purpose of studying various aspects of its disability criteria and offering conclusions as to how it could update or modify its Listings or other policies to reflect current medical guidelines, findings of scientific research, and clinical practices relevant for persons with severe chronic disease. This report responds to a request from SSA for the National Academies to convene an ad hoc committee of experts to evaluate how modern conceptions of sex and gender in medicine and current clinical guidelines may impact certain of SSA’s adult and childhood disability Listings that use sex-specific diagnostic criteria or address conditions traditionally associated with only one sex. Conclusions drawn by this committee (and presented in Chapter 14 of this report) represent an attempt to add clarity and accuracy to SSA’s disability criteria for all disabled Americans, but in particular, and as requested by SSA, for Americans who meet disability criteria and also are transgender or gender diverse (TGD) or have variations in sex traits (VSTs). In addition, the materials presented in this report are intended to aid SSA in creating resources for training disability adjudicators in several areas, including on how sex and gender identity impact disability determinations and how to best understand the medical records it receives from TGD applicants and applicants with VSTs—including the sex and gender identity data contained therein, the descriptions of care and treatment specific to these populations, and common co-occurring conditions that contribute to impairment—so that SSA may appropriately adjudicate these disability applications.
TRANSGENDER AND GENDER DIVERSE PEOPLE AND PEOPLE WITH VARIATIONS IN SEX TRAITS: BACKGROUND, PREVALENCE, AND DISABILITY EXPERIENCE
“Transgender and gender diverse” is an umbrella term the committee uses throughout this document to refer to people whose gender identity differs from what is typically associated with their sex recorded at birth. The committee uses the term “variations in sex traits” to refer to people born with a variety of genetic, anatomical, and hormonal variations that affect the genitourinary tract and reproduction systems; people with VSTs may have
a sex and/or gender identity that differs from their sex recorded at birth. A wide range of terminology is used to refer to sex and gender identity and to TGD people and people with VSTs, as elaborated in Chapter 2.
Population Size
Transgender and Gender Diverse People
According to a 2022 analysis of data from the Centers for Disease Control and Prevention’s Behavior Risk Factor Surveillance System (BRFSS) and Youth Risk Behavior Survey (YRBS), nearly 1.64 million people over age 13 in the United States identify as transgender (Herman et al., 2022). This analysis, conducted by the Williams Institute at the University of California, Los Angeles, estimates that 0.5 percent of U.S. adults (about 1.3 million) and 1.4 percent of U.S. youth ages 13–17 (about 300,000) identify as transgender (Herman et al., 2022). While these figures represent the best available data on estimates of the TGD population in the United States, they may be an undercount, as questions about gender identity were, at the time of the study, included in the YRBS in only 15 states. Still, these figures show that a growing proportion of the younger population identifies as TGD. A 2022 survey by the Pew Research Center echoes these findings, showing that adults under age 30 (5.1 percent) are more likely than older adults (1.6 percent of those ages 30–49 and 0.3 percent of those ages 50 and older) to be TGD (Brown, 2022).
People with Variations in Sex Traits
Estimates of the percentage of the population born with VSTs vary between 0.05 and 1.7 percent, depending on the definition used for VST (e.g., restricting the definition to include only ambiguous genitalia or taking a broader approach to include other differences in characteristics or reproductive anatomy) and the type of study conducted (medical or general population study) (Blackless et al., 2000; Fausto-Sterling, 2000; Hughes et al., 2007). Overall, the statistics for the occurrence of VST are possibly inaccurate, given the difficulty of accessing knowledgeable medical providers and variability in documentation.
Disability Experience among Transgender and Gender Diverse People and People with Variations in Sex Traits
A growing body of data consistently demonstrates that TGD people experience a greater burden of poor physical health, mental health, and health-related quality of life compared with their cisgender counterparts
(Fredriksen Goldsen et al., 2022). TGD people also experience a greater burden of disability overall, and TGD people with disabilities are more likely than cisgender people with disabilities to report an unmet need, such as the inability to obtain a needed prescription medication or to see a doctor when needed (Downing and Przedworski, 2018; Fredriksen Goldsen et al., 2022; Mulcahy et al., 2022). These findings have been echoed in multiple studies, including a study using nationally representative data from the BRFSS which found that TGD people have a greater probability of reporting a disability compared with their cisgender peers (Smith-Johnson, 2022). In this study, TGD adults were found to have a “27 percent chance of having at least one disability at age 20 and a 39 percent chance of disability at age 55, nearly twice the rate of cisgender counterparts” (Smith-Johnson, 2022, p. 1470). Likewise, a 2015 study by the National Center for Transgender Equality found that 39 percent of transgender survey respondents (n = 28,000) reported one or multiple disabilities, compared with 15 percent of the general U.S. population (James et al., 2016). That survey also found that transgender respondents were almost four times as likely as the general population to report difficulty in conducting basic activities of daily living (including visiting a doctor’s office or going shopping), and six times as likely to report having serious difficulty concentrating, remembering, or making decisions because of a physical, mental, or emotional condition (James et al., 2016).
These studies examine disability overall and not necessarily disability in the SSA context, as federal law requires a very strict definition of disability within SSA programs (as described in Box 1-1).2 However, TGD populations served by SSA may also experience greater disability: Dragon and colleagues (2017) showed that 71 percent of TGD Medicare beneficiaries were entitled to disability benefits and had more disabilities overall compared with their non-TGD counterparts. Notably, in this study, a greater proportion of TGD Medicare beneficiaries were younger than age 65, identified as Black, and had chronic conditions (including chronic obstructive pulmonary disease [COPD] and depression), as well as additional potentially disabling pain and neurologic conditions, compared with non-TGD beneficiaries (Dragon et al., 2017).
While research is lacking on disability among people with VSTs, the available data suggest that, compared with the general population, they
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2 BRFSS surveys ask a set of six questions related to disability; answering “yes” to one or more of these questions means a respondent is considered to have a disability: (1) “Are you deaf or do you have serious difficulty hearing?” (2) “Are you blind or do you have serious difficulty seeing, even when wearing glasses?” (3) “Because of a physical, mental, or emotional condition, do you have serious difficulty concentrating, remembering, or making decisions?” (4) “Do you have serious difficulty walking or climbing stairs?” (5) “Do you have difficulty dressing or bathing?” (6) “Because of a physical, mental, or emotional condition, do you have difficulty doing errands alone such as visiting a doctor’s office or shopping?” (CDC, 2018).
experience greater morbidity from chronic disease, including some of the specific chronic conditions examined in this report, and experience a range of chronic care needs, as described in Chapter 7 (Bojesen et al., 2006; Gaston et al., 2021; Romejko et al., 2022).
In addition, and of importance in considering SSA’s work-related disability criteria, social stigma, gender dysphoria, and other mental health concerns may interfere with the educational trajectory of TGD/VST youth (Budge et al., 2020; Hatchel et al., 2019; Johns et al., 2021), and TGD people at any age may face significant employment discrimination (Davidson, 2016; Kattari et al., 2016). Education and employment are predictors of more positive health outcomes and healthy aging (McDowell et al., 2019), so challenges in these areas increase vulnerability to poor health outcomes.
SOCIAL SECURITY ADMINISTRATION: DISABILITY DETERMINATIONS
To understand the committee’s charge and the scope of this report, it is first helpful to understand the basics of SSA disability determinations. SSA administers benefits for disabled Americans through two programs: (1) the Supplemental Security Income (SSI) Program for adults and children (under age 18) who meet disability criteria and qualify based on limited income and resources3; and (2) the Social Security Disability Insurance (SSDI) Program for disabled workers who have worked for a sufficient period of time to qualify for SSDI benefits (in other words, people who are “insured” under the Social Security Act because they have contributed to the Social Security trust fund by paying taxes on their earnings over time). SSDI covers certain disabled dependents as well. A person with both limited income/resources and a work history can qualify for both SSI and SSDI.
To receive disability benefits (SSDI or SSI) from SSA, an individual must meet the statutory definition of disability, which, for adults, is the “inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”4 SSA considers a medically determinable physical or mental impairment to be an impairment that results from anatomical, physiological, or psychological abnormalities that can be shown by medically acceptable clinical and laboratory diagnostic techniques. A child under age 18 is considered disabled if he or she “has a medically determinable physical or mental impairment, which results in
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3 “Income” includes wages, Social Security benefits, and pensions, and “resources” are things of value an applicant may own, such as a second vehicle or money in a bank account (SSA, 2024).
4 42 U.S.C. § 1382c(a)(3)(A) (2004).
marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”5 SSA’s definition of a “medically determinable physical or mental impairment” is the same for adults and children. A finding of disability in both adults and children depends on the severity of functional limitations arising from the applicant’s impairment or combination of impairments.
SSA evaluates eligibility for both SSI and SSDI for adult applicants through a five-step sequential evaluation process, described in Box 1-1. The evaluation process is modified for child applicants, as described below.
BOX 1-1
SSA Disability Determinations: Five-Step Sequential Evaluation Process
The Social Security Administration (SSA) engages in a five-step sequential evaluation process to determine adult eligibility for Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) programs. The five steps are as follows:
Step 1: SSA considers the disability applicant’s current work activity. If the applicant is currently engaged in what SSA considers to be “substantial gainful activity,” the applicant is not eligible for disability benefits under either SSI or SSDI and the process ends here, regardless of the applicant’s medical condition. In 2024, the threshold income—the most a person can earn and still be eligible for disability benefits—is $1,550 a month ($18,600 per year) for people who are not blind ($2,590 per month for blind applicants).
Step 2: SSA considers the medical severity of the applicant’s impairment(s) and whether their impairment meets the duration requirement. Under 20 C.F.R. § 404.1509, unless an applicant’s impairment is expected to result in death, the impairment “must have lasted or must be expected to last for a continuous period of at least 12 months.” If an applicant cannot provide sufficient documentation that their impairment(s) meets the duration requirement, the disability application will be denied.
Step 3: SSA considers the medical severity of the applicant’s impairment(s) and whether they have an impairment(s) that “meets” or “medically equals” one of the categories in the
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5 42 U.S.C. § 1382c(a)(3)(C)(i) (2004).
For children, SSA determines at step 3 whether the impairment(s) meets, medically equals (is equivalent in severity to), or functionally equals (i.e., the impairment[s] results in functional limitations equivalent in severity to) the criteria in SSA’s Child Listings.6 If a child’s impairment or combination of impairments “does not meet or medically equal any listing, [SSA] will decide whether it results in limitations that functionally equal the listings.”7 Functional equivalence refers to functionally equaling the Listings: SSA’s technique for determining functional equivalence is a “whole child” approach that “accounts for all of the effects of a child’s impairments singly and in combination—the interactive and cumulative effects of the impairments—because it starts with a consideration of actual functioning in all settings” (SSA, 2009).
regulations called the Listing of Impairments (the Listings). For adults, the Listings describe, for each of the major body systems, impairments SSA considers to be severe enough to prevent a person from engaging in any gainful activity, regardless of his or her age, education, or work experience, and serve as a “screen-in” step. If SSA finds that the applicant’s impairment meets or medically equals a Listing, then the application is accepted and benefits are awarded (and the analysis does not proceed to steps 4 and 5). Applicants proceed to step 4 when their impairment is severe but does not meet or medically equal any Listing within the Listing of Impairments.
Step 4: SSA assesses the applicant’s “residual functional capacity” and past relevant work. Residual functional capacity is the maximum level of physical or mental performance that the applicant can achieve given the functional limitations resulting from their medical impairment(s). If an applicant has the capacity to engage in some portion of their past relevant work, the application will be denied.
Step 5: SSA determines whether the applicant can perform any work in the national economy on the basis of the assessment of residual functional capacity and the applicant’s age, education, and work experience. If the applicant can make an adjustment to perform other work, SSA will deny the disability application. Otherwise, the application will be approved and disability benefits awarded.
SOURCES: 20 C.F.R. § 404.1520 (2012); SSA, 2024.
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6 20 C.F.R. §§ 416.926, 416.926a.
7 20 C.F.R. § 416.926a.
STUDY CHARGE AND SCOPE
SSA requested that the National Academies convene an ad hoc committee of experts to evaluate how modern conceptions of sex and gender in medicine and current clinical guidelines may impact certain of SSA’s adult and childhood disability Listings that use sex-specific diagnostic criteria or address conditions traditionally associated with only one sex. In addition, SSA asked for a description of the current collection and use of sex and gender identity data in clinical practice and across the health care system; an examination of the impact of gender-affirming hormone therapy on physiological sex differences; and a discussion of how common therapies, treatment, and care used in practice today for TGD people and people with VSTs may impact disability evaluation. This report responds to these requests. The statement of task provided by SSA is displayed in Box 1-2.
Social Security Disability Applicants Who Are Transgender and Gender Diverse or Have Variations in Sex Traits
Although the statement of task asks the committee to review gender-affirming care and other treatments for TGD people and people with VSTs, it should be noted that SSA itself does not offer gender-affirming treatment or care (or health care services of any kind). Furthermore, SSA does not stand in a position to determine what gender-affirming treatment and care should be, or how these health care services should be financed through public or private insurance. SSA is a federal agency distinct from the Department of Health and Human Services (HHS). The policy decisions made by HHS (or federal or state programs that receive HHS funding) regarding gender-affirming care do not impact decision making at SSA, just as SSA’s policy decisions on disability criteria do not impact care for chronic diseases within HHS-funded programs.
While SSA does not determine what appropriate care for TGD people and people with VSTs should be, it does receive applications for disability benefits that may come from these populations. SSA does not currently ask its applicants questions around gender identity, sex recorded at birth, or other matters that might be related to the lived experience of TGD people or people with VSTs; therefore, this committee cannot know how many TGD people or people with VSTs currently receive disability benefits from SSA or how many have applied for benefits and been denied. However, given research presented above on chronic disease and disability experienced by TGD people and people with VSTs, these populations may make up a larger portion of SSA’s population than of the general population.
On the other hand, as examined in Chapter 3, TGD people and people with VSTs encounter considerable challenges and inequities in their ability
BOX 1-2
Statement of Task
An ad hoc committee of the National Academies of Sciences, Engineering, and Medicine will review the latest published research and medical guidelines addressing the current status of sex-specific medical diagnosis, evaluation, and treatment of individuals who are transgender or who are undergoing gender-affirming procedures. Based on the available evidence, the committee’s report will strive to
- Describe the current clinical conceptions of sex and gender accepted by the medical community, including
- How sex and gender are medically defined and the preferred nomenclature for transgender individuals, those who have undergone some amount of gender-affirming therapy, treatments, or care, and others with intersex sex traits, expression, or identity;
- The recognized categories of individuals with intersex sex traits, expression, or identity, and to the extent possible, identify
- Each category’s prevalence in the American public;
- How does the medical community handle decisions involving intersex, transgender, and transitioning patients and what are the particular impacts each trait, expression, or identity has on medical evaluation and care; and
- Any trends or potential changes in how physiological sex differences are conceptualized, measured, or accounted for in the provision of medical care and what is driving these trends;
- How and when sex and gender identification information is collected and used in the clinical practice of medicine; and
- How other large, national health organizations, besides the Social Security Administration (SSA), collect sex and gender information, and whether and how they use that information to make health care decisions (e.g., Veterans Health Administration, Medicaid, health management organizations).
- Identify the usual physiological differences between the male and female sex and describe what is known about
- How differences between the sexes are measured and change in quantity or quality over the course of development, puberty, and growth;
- Exceptions to these usual differences, their prevalence, and what can cause them;
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- The specific effect hormonal or other gender-affirming therapies, treatments, or care (or similar therapies used for other reasons) have on expected physiological sex differences such as height and weight, including how those differences change based on the onset, duration, or intensity of the employed therapy, treatment, or care; and
- The diagnostic or evaluative testing that may be impacted by sex differences or sex transition and how to account for that impact.
- Describe the gender-affirming therapies, treatments, and care utilized most commonly today to aid in sex affirmation and detail for each
- The method of action and expected physiological effect;
- Prerequisite testing or treatment before the therapy, treatment, or care is prescribed;
- Ways of categorizing the therapies, treatments, and care;
- The general course of treatment, specific impacts, and potential side effects from the therapy, treatment, or care, including how progress is measured and indicators that would lead to cessation of the therapy, treatment, or care; and
- Common comorbid impairments for those seeking, undergoing, or under the effects of the therapy, treatment, or care.
- For the criteria in the listing of impairments that currently consider an individual’s gendera describe the evidence related to
- If these criteria were changed to vary based upon an individual’s birth sex, or, alternatively, to vary based upon an individual’s affirmed sex after gender-affirming therapy, treatment, or care, rather than their gender, would the criteria appropriately measure the severity of the underlying medical concept?
- Based on the current criteria, could sex assigned at birth or affirmed sex (or some other categorization) be used to measure the severity of the underlying medical concept as a medically appropriate indicator of severity?
- What guidelines are available to maintain the specificity of these criteria for persons who have undergone some type and amount of gender-affirming therapy, treatment, or care or who have an intersex sex expression, trait, or identity?
- Are there alternative tests, evaluations, or laboratory values that would offer similar insight into functional capability as what is revealed by the current criteria?
- If and how other large, national health organizations, besides SSA, assess the impairments associated with these criteria and determine eligibility for individuals who have undergone some type and amount of gender-affirming therapy,
-
- treatment, or care or who have an intersex sex expression, trait, or identity, to the extent applicable?
- If there are alternative tests that would offer similar insight into functional capability, could an individual’s sex assigned at birth or affirmed sex (or some other categorization) be applied to appropriately assess medical severity for each of those tests?
- For the criteria or Listings in the Listing of Impairments that currently consider conditions generally associated with only one sex, what is known aboutb
- How does the medical community diagnose and what terminology is appropriate to evaluate the considered conditions when they affect an individual that has undergone some type and amount of gender-affirming therapy, treatment, or care or who has an intersex sex expression, trait, or identity?
- Which of SSA’s existing Listing criteria could be most appropriately used to evaluate these conditions in individuals affected by some type and amount of gender-affirming therapy, treatment, or care or who have an intersex sex expression, trait, or identity?
- What are the circumstances under which an individual with a different sex assigned at birth could appropriately be evaluated under the criteria?
- What, if any, changes to the current criteria would be necessary for them to serve as medically appropriate indicators of severity for claimants outside of the generally associated sex?
- Are there any screening recommendations or guidelines related to the considered conditions specific to individuals who have undergone some type and amount of gender-affirming therapy, treatment, or care or who have an intersex sex expression, trait, or identity?
- Do other large, national health organizations, besides SSA, assess these impairments and determine eligibility for individuals who have undergone some type and amount of gender-affirming therapy, treatment, or care or who have an intersex sex expression, trait, or identity?
The report will include findings and conclusions but not recommendations.
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a Adult Listings with different criteria for males and females include 3.02, 3.03, 3.04, and 6.05. Child Listings with different criteria for males and females include 103.02, 103.04, 105.08, and 106.05. Listings that refer to male and female growth charts under Listing 105.08B include 100.05, 104.02, 106.08, and 114.11(I).
b Listings considering conditions generally associated with only one sex include 13.23, 13.24, 13.25, 13.26, and 14.11(I).
to access quality health care services, and experience a disproportionate burden of structural barriers, including discrimination, violence, and stigmatizing experiences, inside and outside of health care interactions (Bockting et al., 2013; Brown and Jones, 2016; Caceres et al., 2020; Feldman et al., 2021; Grant et al., 2011; Haghighat et al., 2023; Jackson et al., 2008; Maragh-Bass et al., 2017; Poteat et al., 2013, 2016; Seelman et al., 2017). These well-established structural barriers and inequities may mean that fewer TGD people and people with VSTs have the support they need from providers to submit an application for disability benefits to SSA.
Regardless of their actual numbers among populations applying for and receiving disability benefits from SSA, logic dictates that at least some applicants for SSA benefits will have TGD or VST lived experience. SSA developed the committee’s statement of task with these applicants in mind in effort to ensure that its disability criteria provide an accurate and clear assessment of function for these and all populations that may apply.
Disability Listings Included in the Statement of Task
While questions around sex assigned at birth and gender identity are important to diagnosis, treatment, health disparities, and morbidity for many chronic diseases, SSA asked the committee to examine how these concepts impact a few specific conditions within SSA’s disability criteria as described under the Listing of Impairments. Imbedded within the statement of task are several adult and childhood disability Listings that refer to an applicant’s sex or gender by using sex-specific diagnostic criteria. These Listings (Box 1-3) comprise adult and childhood respiratory disorders, adult and childhood chronic kidney disease, and various childhood Listings related to growth failure.
SSA also asked the committee to review those disability Listings that are traditionally associated with one sex, comprising several cancers of the reproductive system and criteria for assessing human immunodeficiency virus (HIV) infection in women (Box 1-4).
The committee acknowledges that many chronic diseases vary by sex beyond those listed in Boxes 1-3 and 1-4. Sex differences in disease prevalence, presentation, manifestation, incidence, diagnosis, response to treatment, long-term effects, and disability are common in nearly every major chronic disease, including cardiovascular disease, stroke, Alzheimer’s disease, diabetes, mental health conditions, and autoimmune disorders (Mauvais-Jarvis et al., 2020). While these sex differences may matter for chronic disease and disability among TGD people and people with VSTs, the committee did not endeavor to review all disability Listings to determine whether and how those differences may impact these populations. Rather, the committee was tasked with examining only those chronic diseases that
BOX 1-3
SSA Disability Listings with Sex-Specific Diagnostic Criteria
Respiratory Disorders (Adult and Childhood)
3.00 Respiratory Disorders—Adulta:
3.02: Chronic respiratory disorders due to any cause except CF [cystic fibrosis]
3.03: Asthma
3.04: Cystic fibrosis
103.00 Respiratory Disorders—Childhoodb:
103.02: Chronic respiratory disorders due to any cause except CF
103.04: Cystic fibrosis
Chronic Kidney Disease (Adult and Childhood)
6.00 Genitourinary Disorders—Adultc
6.05: Chronic kidney disease
106.00 Genitourinary Disorders—Childhoodd
106.05: Chronic kidney disease
Growth Failure (Childhood)e
100.05 Failure to thrive in children from birth to attainment of age 3
103.06 Growth failure due to any chronic respiratory disorder
104.02 Chronic heart failure
105.08 Growth failure due to any digestive disorder
106.08 Growth failure due to any chronic renal disease
114.11(I) Human immunodeficiency virus (HIV) infection; immune suppression and growth failure
SOURCES:1
a https://www.ssa.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm (accessed March 11, 2024)
b https://www.ssa.gov/disability/professionals/bluebook/103.00-Respiratory-Childhood.htm (accessed March 11, 2024)
c https://www.ssa.gov/disability/professionals/bluebook/6.00-Genitourinary-Adult.htm (accessed March 11, 2024)
d https://www.ssa.gov/disability/professionals/bluebook/106.00-Genitourinary-Childhood.htm (accessed March 11, 2024)
e https://www.ssa.gov/disability/professionals/bluebook/100.00-GrowthImpairment-Childhood.htm (accessed March 11, 2024)
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1 All sources accessed March 11, 2024.
have sex-specific diagnostic criteria (outlined in Box 1-3) or are traditionally associated with one sex (outlined in Box 1-4). From the perspective of how SSA evaluates disability under its Listings, sex differences in other chronic conditions do not have a sex or gender component, and therefore are not within the purview of this study.
BOX 1-4
SSA Disability Listings Traditionally Associated with One Sex
Cancers of the Reproductive System (Adult)a
13.00 Cancer—Adult
13.23: Cancers of the female genital tract—carcinoma or sarcoma
13.24: Prostate gland—carcinoma
13.25: Testicles
13.26: Penis
HIV Infection Manifestations Specific to Women (Adult)b
14.00 Immune System Disorders—Adult
14.11(I): HIV [human immunodeficiency virus] infection manifestations specific to women
SOURCES:1
a https://www.ssa.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm (accessed March 11, 2024)
b https://www.ssa.gov/disability/professionals/bluebook/14.00-ImmuneAdult.htm (accessed March 11, 2024)
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1 All sources accessed March 11, 2024.
Take, for example, cardiovascular disease. Ischemic heart disease (IHD)—heart problems caused by narrowed heart arteries, which can lead to heart attack—is the leading cause of morbidity and mortality in women in the United States (Aggarwal et al., 2018). Recognizing and understanding the sex-specific pathophysiology of cardiovascular disease has resulted in improved clinical outcomes for women. Compared with men, women have different risk factors for developing IHD, often exhibit different symptoms of IHD, show pathophysiologic differences, and may require different or additional diagnostic imaging to fully determine the extent and severity of their condition (Aggarwal et al., 2018; Mieres et al., 2014). Sex hormones have been shown to impact IHD as well (e.g., the negative impact of estrogen loss during menopause), and research suggests that estrogen administration increases the risk of cardiovascular events in transgender women (Iqbal and Zaidi, 2009; Masumori and Nakatsuka, 2023; Wellons et al., 2012). Despite the importance of considering sex and gender identity in IHD for appropriate diagnosis and treatment, however, the diagnostic tools8
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8 While there is evidence to suggest sex differences in common diagnostic tools that measure cardiac function, current guidelines do not use gender-specific diagnostic criteria (Kligfield et al., 2007; Tomaszewski et al., 2019).
commonly used to measure cardiac function are not sex specific, meaning test results are not interpreted differently for males and females (Kligfield et al., 2007). Therefore, criteria for determining disability under SSA Listing 4.04, Ischemic heart disease, do not include any sex-specific diagnostic tests or other criteria (SSA, 2008). For this reason, SSA did not include IHD or other cardiovascular conditions within the purview of this committee.
Some disability Listings, however, use sex-specific diagnostic criteria (outlined in Box 1-3 and presented in detail in Chapters 8, 9, and 10), and these criteria can be challenging to put into practice when determining disability for TGD applicants and applicants with VSTs. For example, spirometry is a common test for measuring lung function. SSA evaluation criteria include the use of spirometry measurements as part of evaluating respiratory disorders under adult Listing 3.00 and childhood Listing 103.00. Current clinical guidelines from the European Respiratory Society/American Thoracic Society advise that spirometry be calculated based on age, height, and sex, meaning “biological sex” (Graham et al., 2019; Stanojevic et al., 2022). Clinicians interpreting spirometry for TGD people and people with VSTs must select an appropriate reference sex—male or female—when using spirometry results to predict lung function. This can be a challenge, as sex is not always an easy question to answer for many people with VSTs. For TGD people who undergo pubertal delay and/or receive gender-affirming hormone treatment during puberty (a critical phase in lung development), affirmed gender—not sex recorded at birth—may be the more appropriate reference sex for interpreting spirometry. Chapter 8 of this report reviews respiratory disease Listings in greater depth and considers what the current science and guidelines may mean for evaluating disability among TGD people and people with VSTs.
Similar questions arise in evaluating the various growth failure categories listed in Box 1-3, as these disability listings all utilize the weight-for-length table for children from birth to attainment of age 2 years and the body mass index (BMI) table for children from age 2 to attainment of age 18, both of which are dependent on sex for determining growth as it relates to disability; these conditions are discussed in Chapter 9. Likewise, sex and gender identity are important when considering estimated glomerular filtration rate (eGFR), a common measurement of kidney function, that is calculated based on the patient’s age, sex, and creatinine/cystatin C; chronic kidney disease is discussed in Chapter 10.
Regarding SSA disability Listings traditionally associated with one sex, SSA included in the statement of task reproductive cancers and HIV manifestations specific to women, as outlined in Box 1-4. The committee acknowledges that certain other conditions may be more common in one sex or the other, or present for one sex in specific ways that matter for disability. For example, some common chronic conditions—such as autoimmune diseases and depression—occur at substantially higher rates
in women than in men (Temkin et al., 2023). However, none of these conditions are female specific. For example, while males may constitute only 20 percent of the population affected by autoimmune diseases, they may still suffer from disability related to such diseases, and SSA’s criteria do not limit autoimmune disease Listings to female applicants (Nussinovitch and Shoenfeld, 2012). This report addresses (in Chapters 11 and 12) the question of whether any of the SSA categories traditionally associated with one sex should remain reserved for just one sex; however, reproductive cancers and HIV manifestations specific to women are the only disability Listings that have criteria limited to (or potentially limited to) one sex.
The committee acknowledges that mental health conditions are of significant concern for TGD people and people with VSTs. While this report does not examine disability Listings related to any mental health condition, the committee describes these important issues throughout this report as these conditions may impact care, quality of life, and disability.
SSA Disability Evaluation Processes Included in the Statement of Task
It should be noted that none of the sex-specific measures outlined above determine, on their own, whether an applicant will receive disability benefits. SSA disability criteria under these Listings require that applicants submit additional medical evidence to document the severity of their condition and show the extent of their impairment in support of their disability application. In the case of adult respiratory disorders, for example, applicants may submit, in addition to results of pulmonary function tests, results of imaging tests and other laboratory tests, descriptions of prescribed treatment and the patient’s response to treatment, documentation of recurrent hospitalizations, and other documentation included under Listing 3.00, Respiratory Disorders—Adult. Likewise, people with reproductive cancers provide medical evidence in support of their disability application that may include documentation of their treatment history, response to anticancer therapy, cancer recurrence, evidence of metastasis, or other documentation listed under Listing 13.00, Cancer—Adult or under any specific cancer listing.
Furthermore, medical evidence to document impairment under the Listings is just one type of information applicants are required to submit to prove eligibility for disability benefits from SSA. Applicants must document that they are financially eligible for the SSA program to which they are applying and that they are, as a result of their disability, unable to engage in “substantial gainful activity.” As presented in Box 1-1, if an applicant has a severe impairment but does not meet or medically equal any of the Listings, the sequential process assesses whether the applicant’s physical or mental residual functional capacity allows them to perform past relevant
work (step 4) or whether the applicant can adjust to other work in the national economy (step 5).
The statement of task asks the committee to focus on medical criteria within SSA’s Listing of Impairments; therefore, this report focuses on aspects of the disability determination process related to assessing medical impairment under SSA’s Listings. However, the committee notes that the functional capacity–related questions within SSA’s process are important for TGD applicants and applicants with VSTs, as they are for all disability applicants. As this report highlights, assessing disability for TGD people and people with VSTs is not easily done within the rubric of the Listings, especially where questions of sex and gender identity arise. Where an applicant cannot meet or medically equal a Listing—especially where the complexities raised by sex and gender identity make it challenging to meet Listing criteria—the evaluation of functional capacity becomes a critical component of determining disability for TGD applicants and applicants with VSTs. Certainly, TGD or VST identity or lived experience will factor into the assessment of functional capacity, but the report does not focus on these areas as they are outside of the statement of task and areas of expertise among committee members. However, information provided in this report may support understanding of evaluating functional capacity within disability determination.
STUDY APPROACH
The committee empaneled by the National Academies to conduct this study consisted of 15 members with expertise in the areas of endocrinology, gender and sexual development, gender-affirming care and treatment, the health of persons with variations in sex traits, clinical psychology, pediatrics and adolescent medicine, pulmonology, nephrology, oncology, data collection, health policy, disability policy, and health disparities (see Appendix B for biographical sketches of the committee members).
The committee held five meetings between May 2023 and February 2024, which included four public sessions. At the first public session, SSA reviewed the statement of task with the committee and provided more specifics on its objectives for the study. At the second public session, the committee heard presentations on (1) sex differences in kidney disease, the impact of gender-affirming care, and appropriate evaluation criteria for TGD people with chronic kidney disease, and (2) recent efforts to break the gender–cancer association in preventive screenings and quality measurement. In the third public session, the committee heard presentations on (1) collection of gender identity data and care decision making within the Veterans Health Administration; (2) respiratory disease among TGD people and the selection of an appropriate reference sex for pulmonary
function tests for TGD patients; and (3) collection of sexual orientation and gender identity data in electronic health records. Finally, in the fourth public session, the committee listened to three patient–provider panels that addressed (1) VSTs and implications for disability; (2) chronic lung disease and chronic kidney disease in TGD people and implications for disability; and (3) cancer treatment and care for TGD people and implications for disability. (See Appendix A for the public session agendas.)
In addition, the committee conducted an extensive review of the literature pertaining to (1) care and treatment for chronic disease in TGD people and people with VSTs; (2) current guidelines pertaining to reproductive cancers, HIV, and the sex-specific measurements commonly used to measure pulmonary function, kidney function, and childhood growth; and (3) collection and reporting of sex and gender identity data within clinical practice and across the health care system. Committee members and project staff identified additional literature and information using traditional academic research methods and online searches throughout the course of the study. The committee’s work was further informed by previous reports of the National Academies related to disability and the health of LGBTQ+ populations, which are referenced throughout the report.
ORGANIZATION OF THE REPORT
Given the length and complexity of the statement of task, the committee divided this report into three parts.
Part I: Sex and Gender Data Collection and Clinical Practice
Here, the report examines modern definitions of sex and gender and how medical records document sex, gender, and other important data on the experiences of TGD people and people with VSTs in medical settings. Chapter 2 reviews contemporary understandings of sex and gender in clinical practice and implications for the work of SSA. This chapter includes definitions of key concepts and terms important for understanding sex and gender within the context of clinical medicine. Chapter 3 describes how and when sex and gender information is collected and used in clinical practice of medicine; the committee describes the substantial benefits to the collection of sexual orientation and gender identity (SOGI) data and the significant biases and structural barriers that prevent robust SOGI data collection in health care settings, including unequal and discriminatory care delivery experienced by TGD people and people with VSTs. Chapter 4 provides an overview of SOGI data collection across the health care system. A common thread across the chapters in Part I is the recognition that medical records from various providers form the bulk of the information gathered and
received by SSA as it makes disability determinations. Given that individuals applying for disability benefits from SSA access health insurance in different ways and access care from different types of providers, it is important to understand how the SOGI data collection that takes place—or does not take place—in health care institutions and across various sectors of the health care system impacts the quality of SOGI data available in medical records received by SSA.
Part II: Affirming Treatment and Care for Transgender and Gender Diverse People and People with Variations in Sex Traits
Affirming care and treatment for TGD people and people with VSTs is a broad and variable area of clinical care. While there are guidelines in existence that put forward the highest standard of care, the committee acknowledges that outdated treatment and care practices may still be in common use today. In addition, there is no “one size fits all” approach to care, and care is often variable and patient specific. Some TGD people and people with VSTs do not seek or are not able to access medical intervention, and TGD or VST identity or lived experience does not confer any particular type or amount care. Chapter 5 focuses on the range of gender-affirming care practices, including gender-affirming hormone therapy and surgeries, that may be documented in medical records provided to SSA. Chapter 6 builds on this knowledge by describing various co-occurring conditions that may have a disproportionate impact on TGD populations. Chapter 7 examines the numerous categories that may fall under VSTs and appropriate care for these populations.
Part III: Sex, Gender, and Disability Determinations
With an understanding of the collection of sex and gender data in clinical practice (Part I) and a foundation of care and treatment for TGD people and people with VSTs (Part II), the final part of the report examines the specific disability Listings within the statement of task and responds to SSA’s questions about whether changes in disability criteria may be warranted to assess these conditions accurately for TGD people and people with VSTs within current guidelines and standards of care. Chapter 8 reviews adult and childhood respiratory disorder Listings, including asthma, COPD, and cystic fibrosis. Here, the committee reviews the sex-specific pulmonary function tests included in the disability criteria (including spirometry and diffusing capacity of the lungs for carbon monoxide [DLCO] tests), assessing whether these tests are appropriate for measuring pulmonary function among TGD and VST populations or whether there are alternative measurements that may be more appropriate. Chapter 9 examines the
pediatric weight-for-length table and BMI-for-age table, both of which are gendered and may have implications for appropriate measurement for childhood disability applicants who are TGD or who have VSTs. Chapter 10 reviews adult and childhood kidney disease and looks at eGFR—a common test of kidney function that has sex-specific criteria—considering whether eGFR is appropriate for measuring kidney function among TGD and VST populations or whether alternative measurements may be more appropriate. Chapter 11 focuses on reproductive cancers, including “cancers of the female genital tract” (which includes cancers of the uterus, uterine cervix, vulva, vagina, fallopian tubes, and ovaries) and cancers of the prostate gland, testicles, and penis; here, the committee reviews current guidelines that recommend screening based on organs rather than gender identity or sex recorded at birth and evaluates whether the language SSA uses to describe reproductive cancers could be updated to be more inclusive of TGD people and people with VSTs. Chapter 12 addresses the gender-specific language under the disability Listing “HIV infection manifestations specific to women,” and, similar to the analysis of reproductive cancers in Chapter 11, considers whether language under this Listing could be worded differently to capture data on TGD people and people with VSTs more accurately. Finally, in Chapter 13 the committee gives an overview of the various types of experts who inform SSA disability determinations at different stages in the process, and draws conclusions about where, within its current policies and processes, SSA might think about opportunities for ensuring that these experts have the information and tools they need to make appropriate disability determinations for TGD applicants and applicants with VSTs.
Conclusions
While the committee presents key points at the end of each chapter, Chapter 14 provides the committee’s overall conclusions for the study.
Appendix C
The report contains one substantive appendix, Appendix C, exploring sex differences in physiology and disease pathophysiology, the impact of gender-affirming hormone therapy on physiological health, and the affect exogenous hormones may have on common diagnostic or evaluative tests. Appendix C covers the following topic areas: bone health and body composition, cardiovascular system, immune system, metabolism, gastrointestinal system, nervous system, pulmonary system, renal system, integumentary system, fertility, and sexual function.
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