Why Some Transgender Women Use Hormones Without a Prescription: Findings From Seven U.S. Cities, 2019–2020

Gender-affirming hormone treatment (GAHT) is linked to better quality of life, less depression and fewer interruptions in HIV treatment among transgender women, and it's known to be safe and effective when obtained from a health care professional. But some transgender women use hormones without a prescription — which can mean the wrong dose, the wrong method, and no medical monitoring for side effects such as ischemic heart disease and high blood pressure.

Feminizing hormones aren't controlled substances, but they aren't approved for over-the-counter use either, leaving women unsure whether obtaining them without a prescription is legal. (Masculinizing hormones are a Schedule III controlled substance.)

Earlier studies — usually in a single city, state or clinic — linked nonprescription use with no health insurance, homelessness and exchange sex (receiving money or drugs for sex in the past year). CDC looked at the question across seven cities.

The survey

CDC's National HIV Behavioral Surveillance Among Transgender Women (NHBS-Trans) interviewed 1,608 transgender women from June 2019 to February 2020 in Atlanta, Los Angeles, New Orleans, New York, Philadelphia, San Francisco and Seattle, recruited through respondent-driven sampling. This analysis covers the 1,165 who had used hormones in the past 12 months; 91.7% were using them currently.

Findings

230 (19.7%) had used hormones not prescribed to them in the past year.

Poverty as such made no significant difference: 19.2% at or below the 2019 federal poverty level vs 20.6% above it.

After adjusting for other factors

Taking age, education, city and sampling into account, nonprescription use remained more common among women who:

Lacking a gender-comfortable provider and age were not significant once the other factors were considered.

What it means

Nonprescription hormone use went with economic and social marginalization — being out of touch with health care, lacking insurance or trans-specific care, homelessness and sex work.

• Without insurance or a provider, keeping a prescription is hard and expensive.
• Homelessness can make it hard to contact or reach care; people who do sex work may fear stigma or discrimination in health care settings. Future studies should look at transportation, ways of contacting providers, and anticipated stigma.
• Even with insurance, starting hormones can cost hundreds of dollars, and the provider may be culturally insensitive — so many transgender people choose to obtain and take hormones themselves. Even knowing the dangers, stigma and high costs in health care may weigh more heavily.

Public health professionals can use these findings to design ways to help transgender women use prescribed hormones — but preventing nonprescription use may also require access to housing, trans-affirming health care and insurance coverage. Where the conditions that drive nonprescription use are eased — through affordable, accessible hormone treatment from gender-affirming providers, or by preventing economic disadvantage — nonprescription use could give way to supervised treatment.

Limits

• Results may not represent transgender women outside these cities, or all of those in them — though this was the first time such data were collected through systematic surveillance of transgender women.
• Answers were self-reported; stigma and legal worries may lead to underreporting of nonprescription use, homelessness or exchange sex.
• The survey was cross-sectional, so it can't show cause and effect.
• It didn't ask why women used nonprescription hormones, never took hormones, or stopped.
• The measures of trans-specific care and insurance were single questions, and the homelessness question missed short-term instability such as couch surfing.

Sources

Based on Olansky E, Lee K, Handanagic S, Trujillo L, and the National HIV Behavioral Surveillance Among Transgender Women Study Group, "Nonprescription Hormone Use Among Transgender Women — National HIV Behavioral Surveillance Among Transgender Women, Seven Urban Areas, United States, 2019–2020," MMWR Supplements volume 73, number 1, Centers for Disease Control and Prevention; a work of the United States government in the public domain. The Results section, cut off in the imported copy, was restored from CDC's syndicated text. The report's final model table labels homelessness in reverse (with homeless women as the reference group) while its text says homeless women were more likely to use nonprescription hormones, so that ratio is not given.