About half of transgender and gender-diverse patients in the United States who undergo gender-affirming genital surgery travel outside their home state to receive this care, and those who travel pay nearly 50% more in out-of-pocket medical expenses, according to new findings by Oregon Health & Science University researchers, published in JAMA Surgery.
The OHSU-led study offers the first national estimate of the average cost for gender-affirming genital surgeries. Its findings can help patients and insurance companies better plan for receiving or covering this medically necessary surgical care, says the paper’s lead researcher, Jae Downing, Ph.D., an assistant professor of health policy in the Oregon Health & Science University-Portland State University School of Public Health.
“Traveling a long distance for a major procedure such as gender-affirming genital surgery places a large burden on patients,” Downing says. “We already knew that traveling for health care requires patients to take time off work and pay for travel and lodging on their own, and that it can make receiving follow-up care from qualified providers who are familiar with each patient’s unique needs challenging. Now, our study shows that traveling out of state also increases out-of-pocket medical expenses for trans and gender-diverse patients — even though their surgery’s total cost is largely the same.”
Transgender and gender-diverse people are assigned a sex at birth that differs from their gender identity. Many transgender patients seek medically necessary care from health professionals to affirm their gender. Each transgender patient’s care needs are unique; some patients seek hormone therapy and others seek surgeries for their chest, face or genitals. Genital surgical care is complex, is led by specialized surgeons and can require multiple, subsequent procedures.
To understand the cost of gender-affirming genital surgery, Downing and colleagues from OHSU and the University of Washington studied a research database containing U.S. commercial insurance claim information for 129 million people between 2007 and 2019. Within that data set, 771 patients received a feminizing genital surgery, known as vaginoplasty, or a masculinizing genital surgery, known as phalloplasty.
For all gender-affirming genital procedures combined, 49% of patients traveled outside their own state to receive surgical care. At the same time, whether a surgery was done within or outside a patient’s home state, there was no statistically significant difference in each procedure’s total cost.
To calculate out-of-pocket medical expenses, the researchers added up coinsurance, copayments and deductible payments from insurance claims. They found the patients who traveled out of their state for surgery paid an average of nearly 50% more in out-of-pocket expenses than those who didn’t. The average out-of-state patient paid $2,645, compared with $1,781 for the average in-state patient.
The study also revealed that patients who live in the South travel away from their own state more often for gender-affirming genital surgery. For example, patients who live in the West were 36% less likely to travel out of their home state for surgery than those living in the South.
As such, many patients may need to travel out of their state for gender-affirming genital surgery because there aren’t enough surgeons who provide this care to begin with, and the need to travel may be greatest in the South because the shortage of gender-affirming genital surgeons is greater in that region, Downing and colleagues note. They point to a 2020 study that found there were just 11 surgeons who provide this specialized care in the South, with four practicing in Florida.
“Transgender and nonbinary patients experience enormous barriers to accessing gender-affirming surgery, with one barrier being the lack of local, qualified surgeons and dedicated support teams to help patients navigate this care,” said Geolani Dy, M.D., the study’s corresponding author and assistant professor of urology and of plastic and reconstructive surgery in the OHSU School of Medicine, who also provides vaginoplasty and other gender-affirming surgeries through the OHSU Transgender Health Program.
“Patients and surgeons already know this well,” Dy continued, “and now this study helps quantify how severely we need more gender-affirming surgeons.”
Researchers also found that just 1 in 100,000 patients had a gender-affirming genital surgery paid for by their commercial health insurance provider in 2019, which equates to about 1,800 such surgeries being covered nationwide that year. Drawing from a separate 2021 study on bariatric surgery — which also is not often covered by insurance — this study’s authors found that in 2019, bariatric surgery was 20 times more likely to be covered by insurance than gender-affirming genital surgery.
While an estimated 0.6% to 3% of the U.S. population may identify as transgender, 1 in 100,000 patients equates to about 0.001% of patients having gender-affirming genital surgery covered by commercial insurance. Although not all transgender patients seek genital surgery, commercial insurance appears to substantially undercover those who do, Downing notes.
The researchers acknowledge their study doesn’t count all out-of-pocket expenses; it only tracks allowable out-of-pocket medical expenses for which patients submitted a reimbursement request to their private insurer, with no Medicare or Medicaid claims included. They also note that research is needed to understand the extent to which traveling out of state affects surgical outcomes and to examine why patients travel out of state. Downing and Dy are pursuing additional research funding to study some of these outstanding questions.
Downing and colleagues pursued this study as a result of their work with the Transgender and Non-Binary Allied Research Collective, or TRANS-ARC. A 2021 TRANS-ARC virtual summit of researchers, health care providers and patients prioritized several research topics related to gender-affirming surgical care, including how insurance coverage and out-of-pocket expenses affect surgical outcomes.
This research was supported by internal OHSU funding.
REFERENCE: Jae Downing, Sarah K. Holt, Michael Cunetta, John L. Gore, Geolani W. Dy, “Spending and Out-of-Pocket Costs for Genital Gender-Affirming Surgery in the U.S.,” JAMA Surgery, July 6, 2022, doi:10.1001/jamasurg.2022.2606.