LITTLE ROCK — A survey currently underway in Arkansas is gathering information about the transgender community’s health-care issues on an unprecedented scale.

LITTLE ROCK — A survey currently underway in Arkansas is gathering information about the transgender community’s health-care issues on an unprecedented scale.


"This hasn’t happened before here," said Andrea Zekis of Little Rock, executive director of the Arkansas Transgender Equality Coalition, or ArTEC. "There hasn’t been this big of an investment in transgender health in Arkansas."


The survey is part of Transform Health Arkansas, a project that is bringing health-care providers, researchers and the transgender community together to learn what health-care issues transgender people in Arkansas are facing so they can be researched further and addressed.


"Part of the initial part of the project is to gather what issues are really important to the trans community, in order to move on with this project," Zekis said. "Initially we ask people what they want to have researched, and then eventually we’ll get to the point where we can let it out for major research led by the community."


In April, the Patient Centered Outcomes Research Institute awarded a $15,000 grant to ArTEC and the University of Arkansas for Medical Sciences’ College of Public Health to fund the first phase of the project. Since May, a research working group made up of providers, researchers, transgender people and other supporters has been holding monthly meetings and guiding the project, which includes the survey, regional summits around the state and other outreach efforts.


People can participate in the survey by visiting www.transformhealthar.org. The survey will continue through the end of January, after which the project will be eligible for a grant of up to $25,000 to fund the second phase.


The survey should not be confused with the U.S. Trans Survey, a national survey of transgender people that is not limited to health-care issues.


Zekis said transgender people face a variety of health-care issues that others do not. For one, most insurance companies exclude coverage for gender transition-related care, she said.


This is the case "even though the Affordable Care Act says there should not be any discrimination on the basis of sex," she said.


Dr. Kate Stewart, a member of ArTEC’s board of directors and a health management and policy professor at UAMS, said there is a lack of clarity about whether the federal health-care law requires insurers to cover transition care. A rule clarification that would require those services to be covered has been written and is currently out for public comment, she said.


"We’ll see where that goes. That might actually help a whole lot if it ends up being implemented the way that it’s written right now," she said.


Zekis, who is transgender, said insurance companies sometimes will deny coverage even for services not related to transgender issues if a patient is transgender, as she learned when an insurer initially refused to pay for antibiotics she needed for an infection. Eventually the problem was straightened out, but at first the company assumed the antibiotics were related to gender transition and therefore were not covered.


Such situations can lead transgender people to try to keep health-care providers and insurance carriers from finding out they are transgender, Zekis said.


Another issue is a lack of knowledge on the part of many providers, particularly in small towns, about the health-care needs of transgender people. Often the patients "have to train the providers themselves, which is not ideal," Stewart said.


Transgender patients also may encounter a "lack of cultural competency and sensitivity" when seeking treatment from some providers, she said.


Zekis said transgender patients often fear that care providers will not follow privacy laws and will allow information about them to become known in their communities, which could lead to further discrimination.


Tonya Estell of North Little Rock, an in-person assister who helps people enroll in health-care coverage under the Affordable Care Act, said even some transgender people are uninformed about transgender issues, especially in rural areas.


"A lot of people don’t even know the correct terminology," she said. "I encounter people some days that say, ‘Oh, there is actual terminology for what I feel?’"


Estell said understanding is growing, however.


"Since transgender issues have been in the media more often, have been publicized with shows such as ‘Orange Is the New Black,’ with Caitlyn Jenner publicly disclosing and transitioning, things such as that, people are becoming more aware," she said.


The next Transform Health Arkansas summit is set for today at The Jones Center in Springdale from 1 p.m. to 4 p.m. Advance registration is not necessary.