The data will be used to advocate for accessible, inclusive services under the Oregon Health Plan
A new survey conducted in part by an OHSU professor will for the first time evaluate medical coverage for transgender and gender-diverse people in Oregon with Medicaid.
Jae Downing, associate professor in Oregon Health & Science University’s School of Public Health, said the survey, conducted virtually on genderdiverseoregon.org, will address a lack of data and hopefully spur officials and coordinating care organizations to take action to ensure services under the Oregon Health Plan, Oregon’s Medicaid program, are more accessible and inclusive.
How to participate
The survey is open to any gender-diverse person in Oregon ages 18-64, and respondents will have a chance to win a $50 gift card. To take the survey, visit genderdiverseoregon.org.
“Most of us know that Oregon’s Medicaid program began covering gender-affirming care in 2015, but a lot of folks have reported difficulties both with getting on Medicaid and then also accessing care based on where they live,” Downing said. “One thing that we want to do in this survey is really to understand how access to care varies across the state of Oregon.”
The survey is open to any gender-diverse person in Oregon ages 18-64. It is funded by a grant from the National Institutes of Health. The NIH is one of the largest federal funding sources for health research in the U.S., but Downing said this type of investment is rare and, until recently, unheard of.
The positive changes Downing and the community advisory board they worked with hope to see as a result of the survey are likely a ways away, but so is the completion of the data collection. Downing said when the survey will end is not yet determined but people who wish to take it will likely have months to do so. Researchers are offering respondents an option to be entered to win a $50 gift card for participating.
Downing worked to assemble the board to oversee the research in recent months prior to launching the survey at the start of July. The board is composed of gender-diverse people from a variety of backgrounds to ensure the survey questions can gather representative data. Downing said those on the board tapped into their personal experiences while collaborating on the questions over the course of months.
To pinpoint specific areas where people may struggle to access care, the survey asks questions about substance use treatment, HIV prevention, gender-affirming care, as well as how the COVID-19 pandemic affected access to care.
Downing and Ben Brock, a member of the community advisory board, said trans and gender-diverse people face unique challenges when trying to access medical care, many of which the current system has not addressed.
“Some of the main issues are structural due to rates of discrimination towards us,” Downing said.
Brock also said some of these issues go beyond the care itself and are embedded in the administrative portion of health care.
“Simple bookkeeping issues, such as not having the correct gender available on medical intake forms, can lead to not having the correct name and gender displayed on patient alert wristbands,” Brock said. “Being deadnamed and misgendered every time a medical professional steps into your hospital room can be uniquely traumatizing to endure during a hospital stay.”
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Exactly how prevalent these issues are isn’t precisely documented, but Downing and Brock both say they’re quite common. Another component Downing hopes to make clear to advocates and policymakers is just how much regional disadvantages can create barriers to adequate care.
“The Portland area has a number of great clinicians that are culturally competent providing care,” Downing said. “It’s very challenging for folks who are outside of the Portland area (and) maybe the Eugene area to find clinicians that are going to treat them how they should be treated.”
Brock said he’s had traumatic experiences accessing medical care and regularly has to travel long distances for adequate care.
“Personally, I’ve been the victim of medical battery related to my transition,” Brock said. “I’ve also been denied health care because doctors didn’t want to treat me due to my gender-affirming surgeries, and I routinely travel two hours one way to have simple procedures and physicals performed. My local doctors don’t feel qualified to help me, which puts the burden on me to figure something out. The constant self-advocacy is exhausting.”
While gathering quantitative and qualitative data on trans and gender-diverse people’s experiences with medical care is a crucial goal, the board wants the survey to ultimately result in positive change. Downing said they’re aware this will require getting the data to advocates and a concerted effort to effect change throughout the state.
“I’m not an advocate,” Downing said, “but the goal will be to communicate these findings to Oregon Health Authority and other people who are involved with the (coordinated care organizations) and give them the feedback, ‘Hey, these are the things that came up, these are some of the areas that are maybe underserved, or these are some of the things that are coming up that are specific to our state of Oregon.’ … So, we really need a lot of folks to take the survey to get good results.”
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