Sex and Gender Identification and Implications for Disability Evaluation (2024)

Chapter: 12 Considerations for HIV Manifestations Specific to Women

Previous Chapter: 11 Cancers of the Reproductive System
Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.

12

Considerations for HIV Manifestations Specific to Women

While many people living with human immunodeficiency virus (HIV) lead healthy, active lives, for some, HIV may progress to the point at which their immune system is severely damaged, and they develop one or more opportunistic infections or other serious illnesses that significantly impact their health and ability to work or complete activities of daily living (NIH, 2021a,b). At this advanced stage of disease, individuals with HIV may be eligible for disability benefits from the Social Security Administration (SSA).

SSA’s (n.d.) adult disability Listings for HIV (14.11)1 include several HIV-related impairments or complications of HIV infection that are considered severe enough to hinder a person’s ability to engage in substantial gainful activity. Most medical manifestations of HIV are not sex or gender specific. Kaposi sarcoma, for example, presents in all populations with HIV (Sung et al., 2021), and accordingly, SSA does not set any sex-specific criteria for this cancer under 14.11E. However, SSA includes within its HIV evaluation criteria certain gynecological conditions and cancers that are traditionally associated with cisgender women under a category titled “HIV manifestations specific to women” (14.00F7).

This chapter examines HIV among transgender and gender diverse (TGD) people and people with variations in sex traits (VSTs), describes the impact of gender-affirming care on populations with HIV, and assesses SSA’s

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1 There is a childhood disability Listing for HIV under 114.11, but this chapter does not evaluate SSA’s criteria for HIV in children, as it was not within the purview of the statement of task. Chapter 12 examines childhood growth failure, and in that chapter, the committee examines immune suppression and growth failure as caused by HIV infection (Listing 114.11I).

Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.

criteria for “HIV manifestations specific to women,” offering a gender- and sex-inclusive approach to disability determination for people with gynecological conditions related to HIV infection.

HIV PREVALENCE AMONG TRANSGENDER AND GENDER DIVERSE PEOPLE AND PEOPLE WITH VARIATIONS IN SEX TRAITS

Based on the most recent data from the Centers for Disease Control and Prevention (2024b), in 2022 approximately 1.2 million people in the United States were living with HIV. Approximately 38,000 people in the United States acquire HIV annually, and about 2 percent of new HIV diagnoses each year are among transgender people (CDC, 2024a). The burden of HIV among TGD people is disproportionately borne by transgender women. The most recent meta-analysis of laboratory-confirmed HIV among transgender people in the United States found a prevalence of 14.1 percent (95% confidence interval [CI] 8.7–22.2 percent) among transgender women and 3.2 percent (95% CI 1.4–7.1 percent) among transgender men (Becasen et al., 2019). No laboratory-confirmed data are available for individuals with a nonbinary gender identity. This review did not uncover research (beyond a handful of case studies) examining the epidemiology of HIV among people with VSTs, so the burden on HIV in this population is not known.

Engagement in care, adherence to antiretroviral therapy, and viral suppression are key to achieving and maintaining wellness among people living with HIV. Existing data from CDC (2024b) indicate that transgender individuals who are engaged in care achieve rates of viral suppression similar to those of cisgender individuals. However, these data also indicate that transgender people are more likely than cisgender people to miss medical appointments (31 vs. 20 percent) and to miss doses of their antiretroviral medications (65 vs. 38 percent). These differences in care engagement and adherence are driven largely by greater stigma, higher rates of poverty and homelessness, higher rates of depression, and greater unmet ancillary service needs among transgender people living with HIV compared with cisgender counterparts (CDC, 2023). While the literature does not examine HIV care and treatment among people with VSTs, this population also faces stigma and discrimination in their health care in general, and these factors may also impact their HIV management (Jones, 2016; Thyen et al., 2014; Zeeman et al., 2019).

The most recently available nationally representative data indicate that 44.5 percent (95% CI 42.7–46.4 percent) of people with HIV self-reported having a disability. The most frequently reported disabilities were related to mobility (24.8 percent) and cognition (23.9 percent) (Chowdhury et al., 2021). Data were disaggregated by male and female “gender” only, with no indication for sex assigned at birth; therefore, the proportion of TGD people with HIV who experience disability is unknown. The odds of disability

Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.

were higher among people with lower education, household income below the poverty level, food insecurity, and at least one unmet ancillary service need. Since TGD people with HIV are more likely to experience each of these social determinants of health compared with cisgender people with HIV (Fletcher et al., 2014; Lee et al., 2022; Marcus et al., 2024), it may be reasonable to expect them to have a higher prevalence of disability.

IMPACT OF GENDER-AFFIRMING MEDICAL AND SURGICAL CARE ON HIV

Available data indicate no clinically significant drug–drug interactions between gender-affirming hormone therapy (GAHT) and recommended first-line antiretroviral treatment regimens. However, some antiretroviral medications may have pharmacokinetic interactions with GAHT; therefore, HIV treatment guidelines recommend routine monitoring with appropriate titrations of estradiol, testosterone, or androgen blockers, as needed (HHS, 2023). Despite these guidelines, some TGD people may fear that HIV medications could interfere with their GAHT, causing some to forgo HIV medication in favor of hormone therapy (Braun et al., 2017; Sevelius et al., 2016).

However, there are data to indicate that transgender adults with HIV who receive GAHT are more likely to remain engaged in HIV care and achieve viral suppression on antiretroviral therapy relative to those who do not receive GAHT (Summers et al., 2021). A large study of people with HIV enrolled in Medicaid found that, overall, transgender people with HIV were less likely than cisgender people to experience viral suppression (Rodriguez-Hart et al., 2023). But transgender people who underwent gender-affirming surgery were more likely than cisgender people to achieve viral suppression. Viral suppression rates increased just prior to surgery and remained high for up to 2 years thereafter (Rodriguez-Hart et al., 2023).

Guidelines

The World Professional Association of Transgender Care Standards of Care Version 8 recommend following existing guidelines for HIV prevention and treatment, counseling TGD people that the use of antiretroviral medications is not a contraindication to GAHT, and addressing concerns about potential interactions between antiretroviral medications and hormones (Coleman et al., 2022). The U.S. Department of Health and Human Services (HHS, 2023) Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents with HIV include recommendations regarding transgender people with HIV. These recommendations include antiretroviral therapy for all transgender people with HIV and provision of HIV care within a gender-affirmative model. HHS (2023) recommends pregnancy testing for transgender people with HIV of childbearing potential prior to

Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.

initiation of antiretroviral therapy. Because some gender-affirming medications have been associated with hyperlipidemia, elevated cardiovascular risk, and osteopenia, HIV treatment guidelines recommend choosing antiretroviral regimens that do not elevate these risks (HHS, 2023).

HIV MANIFESTATIONS SPECIFIC TO WOMEN AND SSA DISABILITY

SSA Listing 14.11I includes a general category for other manifestations of HIV infection that do not meet the criteria for other portions of the HIV Listings. Among the many conditions listed here are “gynecologic conditions,” including cervical cancer, pelvic inflammatory disease, and other conditions as described under “HIV manifestations specific to women” (14.00F7). Box 12-1 presents the description under 14.00F7 explaining how SSA documents and evaluates this category.

The gender-specific language in 14.00F7 was included in the SSA disability Listing in 1993 after CDC updated its 1987 case definition for AIDS to include gynecological conditions commonly found among cisgender women with advanced HIV (Castro et al., 1992). More than 20 years later, proposals to remove this gender-specific language were met with resistance because of concern that disability adjudicators might not recognize that certain signs and symptoms were related to HIV infection in women unless they were given specific instructions to take these signs and symptoms into account when making disability determinations (SSA, 2016).

While this concern was certainly not unreasonable, it was flawed by the assumption that only women could manifest conditions such as vulvovaginal candidiasis, pelvic inflammatory disease, and cervical cancer2 (ACS, 2021; Perkins et al., 2020). Transgender men and gender nonbinary individuals assigned female sex at birth may manifest these conditions, as well as associated symptoms such as chronic pelvic pain. Emerging data indicate that chronic pelvic pain is common among transgender men receiving gender-affirming testosterone. Such symptoms may be exacerbated by gynecological manifestations of HIV (Moulder et al., 2020; Zwickl et al., 2023). While the committee’s review did not uncover specific research examining the epidemiology or presentation of HIV among people with VSTs, people with VSTs who do not identify as female could certainly experience these conditions as well. Therefore, limiting adjudicators to considering these conditions only in “women” unfairly excludes people with HIV who have TGD or VST lived experience and may present with the same disabling conditions.

There have been numerous recent efforts across the health care system to update language and criteria using a gender-inclusive approach. For example, as most cervical cancer screening guidelines call for TGD patients to receive

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2 Chapter 11 examines various disability listings for reproductive cancers, including cervical cancer.

Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.

BOX 12-1
HIV Manifestations Specific to Women Under Listing 14.00F7

14.00F7: HIV infection manifestations specific to women.

  1. General. Most women with severe immunosuppression secondary to HIV infection exhibit the typical opportunistic infections and other conditions, such as PCP, Candida esophagitis, wasting syndrome, cryptococcosis, and toxoplasmosis. However, HIV infection may have different manifestations in women than in men. Adjudicators must carefully scrutinize the medical evidence and be alert to the variety of medical conditions specific to, or common in, women with HIV infection that may affect their ability to function in the workplace.
  2. Additional considerations for evaluating HIV infection in women. Many of these manifestations (for example, vulvovaginal candidiasis or pelvic inflammatory disease) occur in women with or without HIV infection, but can be more severe or resistant to treatment, or occur more frequently in a woman whose immune system is suppressed. Therefore, when evaluating the claim of a woman with HIV infection, it is important to consider gynecologic and other problems specific to women, including any associated symptoms (for example, pelvic pain), in assessing the severity of the impairment and resulting functional limitations. We may evaluate manifestations of HIV infection in women under 14.11H-I, or under the criteria for the appropriate body system (for example, cervical cancer under 13.23a).

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a Chapter 11 of this report describes the SSA disability Listing for cervical cancer.

NOTE: PCP = pneumocystis pneumonia.

SOURCE: SSA, n.d.

the same standard of care as cisgender patients (Perkins et al., 2020), the National Committee for Quality Assurance expanded its Healthcare Effectiveness Data and Information Set quality measure on cervical cancer screening to include TGD people and people with VSTs. Rather than reserving cervical cancer screening for “women,” the new measure, effective August 2023, recommends cervical cancer screening for “all people with a cervix” (NCQA, 2023). Likewise, the U.S. Preventive Services Task Force (USPSTF) is currently reviewing recommendations on cervical cancer screening with the aim of adopting gender-neutral language “to communicate that recommendations are inclusive of people of any gender” (Caughey et al., 2021, p. 1953). Populations included in the USPSTF research approach for the

Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.

recommendation update are “persons who have a cervix” (USPSTF, 2021). Chapter 13 describes other efforts under way to decouple gender from cancer by using organ-specific rather than gender-specific language in screening and treatment recommendations (ACS, 2021; ASCO, 2022; Wei et al., 2023).

These inclusive approaches promote equitable care for TGD people and people with VSTs by recognizing that traditional gender representations in screening and treatment may misidentify patient care needs. SSA could remove boundaries for TGD people and people with VSTs by removing gendered language from its HIV Listings. A suggested way to reword 14.00F7 using inclusive language would be to change the title to “Gynecologic manifestations of HIV” and to remove gender-specific language, as depicted in Box 12-2.

BOX 12-2
An Example of Gender-Inclusive Language Under Listing 14.00F7

14.00F7: HIV infection manifestations specific to women. Gynecologic manifestations of HIV.

  1. General. Most women people with severe immunosuppression secondary to HIV infection exhibit the typical opportunistic infections and other conditions, such as PCP, Candida esophagitis, wasting syndrome, cryptococcosis, and toxoplasmosis. However, HIV infection may have different manifestations in women than in men specific gynecological manifestations. Adjudicators must carefully scrutinize the medical evidence and be alert to the variety of medical conditions specific to, or common in, women individuals with reproductive anatomy that includes a vulva, vagina, cervix, and/or uterus with HIV infection that may affect their ability to function in the workplace.
  2. Additional considerations for evaluating HIV infection in women gynecological manifestations of HIV. Many of these manifestations (for example, vulvovaginal candidiasis or pelvic inflammatory disease) occur in women people with or without HIV infection, but can be more severe or resistant to treatment, or occur more frequently in a woman people whose immune system is suppressed. Therefore, when evaluating the claim of a woman someone with HIV infection, it is important to consider gynecologic and other problems specific to women, including any associated symptoms (for example, pelvic pain), in assessing the severity of the impairment and resulting functional limitations. We may evaluate gynecological manifestations of HIV infection in women under 14.11H-I, or under the criteria for the appropriate body system (for example, cervical cancer under 13.23).
Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.

SUMMARY OF KEY POINTS

The burden of HIV is high among TGD people but unknown for people with VSTs. Intersecting social factors rooted in stigma and discrimination faced by TGD people and people with VSTs may serve as barriers to engagement in HIV care and adherence to antiretroviral medication. The same social factors are associated with increased odds of disabling conditions among people with HIV. Social programs that aim to support people with HIV need to be cognizant of the needs of TGD people and people with VSTs.

Increasingly, national organizations are moving away from using gendered language that restricts gynecological conditions and cancers to “women.” Simple updates to language—for example, changing “women with cervical cancer” to “people with cervical cancer”—serve to include all populations that may have or may be at risk of developing these conditions regardless of sex assigned at birth or gender identity. Using more inclusive language within SSA’s HIV disability criteria would reduce some barriers to appropriate disability adjudication for TGD people and people with VSTs.

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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.

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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.

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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.

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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.
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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.
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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.
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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.
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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.
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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.
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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.
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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.
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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.
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Suggested Citation: "12 Considerations for HIV Manifestations Specific to Women." National Academies of Sciences, Engineering, and Medicine. 2024. Sex and Gender Identification and Implications for Disability Evaluation. Washington, DC: The National Academies Press. doi: 10.17226/27775.
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Next Chapter: 13 Considerations for Disability Adjudication for Transgender and Gender Diverse Applicants and Applicants with Variations in Sex Traits
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