The number of transgender people getting gender reassignment surgery has increased as more insurers cover the procedures, according to new research by Johns Hopkins Medicine.
The number of procedures increased nearly four-fold between 2000 and 2014, the Hopkins researchers found by examining information from a national database of inpatient procedures.
The researchers also found that no patients had died from the procedures, which anatomically change a person’s gender. Some critics had said earlier that the surgeries could be unsafe.
The results of the Hopkins study were published Wednesday in the journal JAMA Surgery.
It is one of the first detailed looks into the number of people getting reassignment surgeries, which some prefer to call gender affirming. Until now little data has been collected on the procedures or on transgender health in general.
“For the most part we are not checking gender identity on people,” said Brandyn D. Lau, director of quality and research for the Johns Hopkins Center for Transgender Health. “This makes it really challenging to look at the quality of care for these patients.”
Without good data, it is hard to tell where improvements in care are needed, Lau said.
Transgender people identify with a different gender than the one they were born with. Some undergo hormone therapy, reconstruction of the breasts or genitals and other transformative surgeries.
There are an estimated 1.4 million transgender people in the United States, including 22,300 in Maryland, according to The Williams Institute, a think tank at the UCLA School of Law that studies transgender policies and issues.
Those who work with transgender patients said the results of the Johns Hopkins study show that the health care industry is slowly becoming more sensitive to the needs of these patients.
Jody Herman, a scholar with The Williams Institute, said that more researchers are using medical records from Medicare, Medicaid and private insurers to try to glean a better picture of the health of transgender people.
The data can be used to find health disparities, gaps in coverage and economic factors associated with transgender health care, Herman said.
“There are a lot of ways this research can be helpful and useful for trans health and public policy,” she said.
Deborah Dunn, a physicians assistant with Chase Brexton Health Care, said that the lives of her transgender patients have improved significantly since expanded insurance coverage has allowed more of them to get reassignment surgeries.
“I have seen major changes in people,” Dunn said. “Their lives have drastically improved. They feel more comfortable going out socially. Their self-esteem has improved.”
She said more medical data could help her improve medical care for her patients even more. For instance, it would help to have concrete data on whether cancer rates are higher in transgender patients who take hormone replacement therapies.
“One of the biggest concerns for me as a transgender provider is that it’s very difficult for me to know the health disparities that affect my patients because no one has collected the data,” she said.
The Johns Hopkins researchers looked at data from more than 1,000 hospitals compiled in the National Inpatient Sample, the largest database of inpatient procedures in the United States. To find the data, they looked for medical codes for transsexualism or gender identity disorder, as well as codes for procedures associated with gender reassignment, such as breast reduction.
They identified about 37,827 procedures on people who identified with transsexualism or gender identity disorder between 2000 and 2014. About 11 percent of these encounters involved gender reassignment surgery.
About half of the patients paid out of pocket for their procedures from 2000 to 2005, and about 65 percent did so from 2006 to 2011.
After the Affordable Care Act outlawed gender identity discrimination, more people had their procedures covered by insurance, the researchers found. In 2014, 39 percent of patients paid out of pocket and the rest were covered by Medicare, Medicaid or private insurance.
CareFirst BlueCross BlueShield, the largest insurer in Maryland, expanded coverage for gender reassignment surgery in the state in 2015. It also eliminated language from its policies that denied coverage for any "treatment leading to or in connection with transsexualism, or sex changes or modifications, including, but not limited to surgery."
The insurer worked with the lesbian, gay, bisexual and transgender community to expand its coverage after the group FreeState Legal, which has since changed its name to FreeState Justice, filed an insurance discrimination claim on behalf of a client who was denied coverage.
Those who work with transgender people said many improvements still are needed regarding health care access.
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Herman with The Williams Institute said doctors who specialize in transgender reassignment and other procedures are scarce.
“Coverage might be going up, but if the number of providers doesn’t go up, there is still unmet demand,” Herman said.
Dunn said that most insurance doesn’t provide coverage for patients to go out of state when they can’t find a doctor in Maryland. Some insurance companies and employers still don’t cover gender reassignment, she said. She also would like to see insurance cover puberty blockers for transgender youth, tracheal shavings and hair removal.
While CareFirst chose to cover reassignment procedures, state law doesn’t require it of private insurers, something Dunn and others said is problematic. Many employers also choose not to cover the procedures.
“We are unsurprised that we’re seeing more transgender Marylanders receiving this medically necessary care,” said Mark Procopio, executive director of FreeState Justice, in an e-mail. “While public insurance plans in the state of Maryland now cover these procedures, there is no such requirement for private insurers. We applaud the removal of discriminatory exclusions of transition-related care in private insurance plans and hope to see more private insurers make these same decisions.”
The Johns Hopkins researchers said that many providers remain uncomfortable asking their patients about their gender identity, but they hope that starts to change.
“This lays the groundwork of understanding that we need to do a better job of collecting information,” Lau said.