SALT LAKE CITY — Normally, when the Centers for Disease Control and Prevention sends epidemiologists to study outbreaks in a certain area, they’re looking at infectious diseases, like a rash of listeria, salmonella or even Ebola.
But for the past two weeks, health officials have been scouring Utah data because of another epidemic: teen suicide.
From 2011 to 2016, the annual number of adolescent suicides in Utah nearly doubled — with a record high 44 deaths in 2015 — and health officials are urgently trying to find ways to prevent the number from spiking higher.
But it’s been difficult because Utah doesn't have data about one of the most at-risk groups of young adults: LGBT teens.
National data shows that lesbian, gay and bisexual teens are at a much higher rate for suicide attempts — 29.4 percent of LGB kids attempted suicide compared with 6.4 percent of non-LGB kids — and higher rates of suicide planning — 38.2 percent to 11.9 percent. (National surveys from which these numbers are drawn don't include questions about transgender youth yet, but officials worry their health risks are even greater.)
But Utah doesn't have data on LGBT teens, and during their recent Epi-Aid visit, CDC officials recommended that Utah "enhance surveillance systems, including youth-based surveys to include questions on sexual orientation," said Michael Friedrichs, lead epidemiologist at the Bureau of Health Promotion in the Utah Department of Health.
Utah is one of 25 states that has not asked about sexual orientation on a nationwide survey of ninth-12th graders, according to the CDC's Youth Risk Behavior Survey or YRBS.
Friedrichs knows that LGBT issues are often seen as controversial, political or extra sensitive topics, especially when they involve adolescents, but he's not looking for an ideological argument, just data. He realizes some parents, school officials or even kids may not understand how data is gathered and used or why it's important in the first place. And some Utah districts said they worried about how students (or their parents) would feel about answering that question out of the blue.
More education and information would be helpful, said Terry Shoemaker, executive director of the Utah School Superintendents Association, who said the group hadn't discussed the survey question specifically, but they are interested in talking with health department officials about how to address teen suicide.
"We don't want to be afraid of participating in a survey," Shoemaker said. "The idea behind those surveys is to gather relevant information so you can (prevent) serious problems in the future, (and) the suicide rate in Utah — that's a deep concern for us."
Solid data and strong partnerships between health and school agencies are crucial in addressing problems, say officials in states that include the question on sexual orientation. North Carolina now has data-led trainings help adults become more aware of LGBT issues in schools.
"We clearly need to do more advocacy and more education," says Friedrichs. "(School districts) should be demanding the data rather than fighting the data. People are afraid of what they don't understand."
Every two years, high school students across the country use one class period to take the YRBS, an anonymous, roughly 90-question survey.
The survey asks about a variety of life-impacting health factors, from wearing a seatbelt or eating breakfast to whether a student has ever had a concussion, smoked marijuana or gotten in a fight at school.
Every state (and some large urban school districts) use the same survey, but they can add extra approved questions if they'd like more information about certain topics. They can also choose to take out questions. (Utah also does not ask several questions on sexual risk behaviors.)
Beginning in 1997 and until 2015, two questions about sexual identity and the sex of sexual partners were optional for any state or district that wanted to add them, and many did.
However, in 2015, the CDC added the optional sexual identity questions to the standard questionnaire, stating that “collecting such data enables those working with youth to better understand the health and safety risks among sexual minority youth and then adjust prevention priorities accordingly,” according to the CDC website.
(The questions mention gay, lesbian, bisexual or unsure — transgender questions are not yet included.)
The move was cheered by GLSEN (originally the Gay, Lesbian & Straight Education Network) which has been advocating for nearly two decades for more data on sexual minority youth to show they're "suffering from disproportionate levels of harassment, bullying, discrimination in schools...(which causes) poor mental health outcomes, poor educational outcomes," says Emily Greytak, director of research for GLSEN.
"You have to demonstrate that a problem exists in order to try to work on a solution," Greytak said. "There's been a lot of speculation and anecdotal information, but we really believe in the power of evidence and the power of rigorous data collection and research to understand and document what's going on for marginalized populations."
Those added questions created a large national data set, and states that asked at least one of the sexual orientation questions now have specific data to use in requesting grants, starting new programs or simply increasing awareness of their students' needs — which go beyond suicide prevention.
Officials in Wyoming now know that 23.5 percent of gay, lesbian or bisexual teens have experienced physical dating violence, compared with 7.5 percent of straight teens.
California must grapple with the fact that nearly 22 percent of LGB kids have driven after drinking, compared with 5.7 percent of straight kids.
And in Arkansas, 23 percent of LGB kids said they had been threatened or injured with a weapon on school property, compared with 8.4 percent of straight kids.
Teens across Utah are taking the 2017 YRBS right now, but they're not answering the sexual orientation question, much to Friedrich's chagrin.
He was cautiously hopeful in the fall as he put the survey online (a required step) then sent the obligatory letters notifying schools of the addition of the sexual orientation question at least four to five months before students would take the survey.
Beginning in December and into January, Friedrichs began to hear concerns from school districts, some even saying they'd refuse to participate if the sexual orientation question remained on the survey.
Davis School District was among those that refused to include the sexual orientation question this year, said Logan Toone, director of assessment, research and evaluation for the district.
"(We had to make a) snap decision as to whether our community would tolerate that type of approach, and if it would be good for our kids themselves to face that question," he said.
"Our anticipation was that being asked about reporting their gender identity or sexual orientation would increase their stress levels and awareness of concerns from peers," Toone said. "Even though it's anonymous, it was just a matter of do we want students to be thinking about that, grappling with that, in schools?"
Both Davis School District and Cache County School District, which also declined to participate with the sexual orientation question left in, said they hear from concerned parents every time the YRBS is administered who "don't know if we should be asking these questions of our kids," Toone said.
Both districts said parents often express concerns over questions that ask about drugs or drug paraphernalia or other risky behaviors. However, Toone said when he reminds parents that they can choose not to sign the permission slip — required before any Utah child can take a survey — the concerns usually subside.
Cache County School District also wanted to know more about the purpose of the question and how the information would be used, said Tim Smith, district public information officer.
The CDC lists answers to frequently asked questions about the YRBS on its website, and clarifies that data cannot be traced back to individual students, and there is "no evidence that simply asking students about health behaviors will encourage them to try that behavior."
Washington County School District's Board of Education said it was fine leaving the question in, as long as they had parental permission for both the survey and the sexual orientation question itself, said Steven Dunham, director of communications for the district.
It's worth the effort to address parental concerns and help them understand the value of public health data since they can become the greatest advocates for gathering it, Friedrichs said.
"Parents have the hugest impact," he said. "If it comes from the (biggest) community, the school board listens. If it comes from the state, it's like Big Brother. If the school board decides not to include these questions, it deprives the parents of the right to decide what's appropriate for their child to answer."
Not this year
With two hard nos and several other districts waffling or unsure of parent response, Friedrichs had to make a choice.
If he left the question in and enough schools boycotted it, they'd fall short of the CDC-required 60-percent response rate and all their data would be void. Or, he could take out the question, lose sexual orientation data, but hope to meet the response rate.
He even called the CDC to get its opinion. He said he was advised to remove the question, especially since Utah didn't meet the response rate in 2015 — either too many parents declined, or not enough effort was made to get consent forms back, Friedrichs said — the first time Utah has failed to get data since the YRBS began in 1991.
So Friedrichs took the question out.
Alpine School District was preparing to go forward even though "it's a controversial type of question," but then learned it was removed, said Kimberly Bird, assistant to the superintendent.
"We felt like we could glean something from the data," she said. "Anytime we have an opportunity to learn something about our kids and where their struggles lie, we feel like that could have been something that helped us."
While Friedrichs waits for the final response rate (schools have until June to finish testing), he's already writing a grant proposal for the 2019 YRBS, in which he's asking for money to conduct focus groups with school districts to hear their concerns.
“In public health, a lot of times we get beat down, and we have to pick ourselves up and keep trying,” Friedrichs said. "I'm not trying to make it a moral issue, but make it a health issue. I don’t want (kids) dying on my watch."
In North Carolina, Jane Ann Miller is thinking the same thing.
Her job title is a bit wordy: public health program consultant in the Injury and Violence Prevention Branch of the North Carolina Department of Health, but her focus is simple: prevent teen suicide.
So several years ago she was alarmed to discover survey data that showed 40 percent of North Carolina students reported feeling unsafe at school because of physical appearance or gender expression, and 45 percent said they were bullied or harassed based on their sexual orientation.
She was already aware of national data showing higher rates of suicide among sexual minority kids, and in North Carolina, YRBS data showed a steady climb in adolescent suicides for the past four years.
Armed with this data, she approached Ellen Essick at the North Carolina Department of Public Instruction in 2011 and asked if the state could do more.
Together, they added suicide prevention to Essick's "How to be an Ally to LGBTQ youth," training, making it "invaluable," Essick says. (North Carolina didn't add sexual orientation to its YRBS until 2013, and the data confirmed its original concerns.)
The hallmark of the training is a 17-minute video where local North Carolina teens Lillie, Darius, Aaron and Josh share what it's like to be bullied in high school because they're LGBT, and how they crave support and kindness from others.
“The issue of LGBT students wasn’t really appreciated, it wasn’t really known,” Miller said. “We're trying to impart the knowledge that yes, there are LGBT students in the schools they’re our youth and (we need) to really put a face on these children and their needs.”
But they're not always easy conversations, especially in North Carolina, a state facing fierce criticism over a controversial "bathroom bill" that requires transgender kids to use public bathrooms, locker rooms and other public facilities of the gender specified on their birth certificate.
But the "How To Be an Ally" training is not about pushing any "specific agenda," said Mary Jane Akerman, executive director of communities in schools of Thomasville, North Carolina, who organized Ally training for her five schools.
"What we are saying is that students come first and we are going to support all students in our school, and all families are welcome in our school," she said. "We haven't had any negative push-back on that."
Because the training is only in roughly 40 of 115 school districts in North Carolina, it's hard to know if it's having a definitive impact on suicide rates in the state, says Miller. However, a follow-up study found that trainees felt better prepared to advocate on behalf of LGBT teens in school, even if interaction with those teens didn't actually increase.
The nonmandatory training helps school counselors, teachers and administrators "unpack how (they) as adults feel about different scenarios," and realize how those feelings can impact students, Akerman says.
Trainees talk through situations like how to respond to a child who brings in a family photo showing his two moms or two dads. Or what to say when students use phrases like, "that's so gay."
"We’re not asking someone who thinks that being LGBT is wrong or sinful to suddenly start loving all things LGBT," said Essick, section chief of North Carolina Healthy Schools. "But we’re asking people who yesterday may have used a derogatory term to tomorrow not be using that term anymore.”
She remembers one official who finished a training and vowed he was “no longer going to play 'smear the queer.'" In fact, until the training, he hadn’t even realized he was playing an offensively named game.
“Celebrating the small victories has been the success of this work,” Essick said. “It’s not to force someone, but to encourage them to support all students and to use your data to drive your decision about that.”