by Ethan DeWitt, New Hampshire Bulletin
This story was updated on May 24, 2023 at 11:43 a.m. to correct the percentage of callers the National Eating Disorders Association says it was unable to immediately help with its in-person call line.
Two months into his summer break last year, Matthew Brown began to worry he had an eating disorder. Brown, who was then about to enter Merrimack High School as a freshman, did not want to talk to his parents about it. But he did want answers.
After a Google search, Brown found the National Eating Disorders Association hotline. The service offered a calling and a texting option; Brown chose texting. Quickly, he was put in touch with a trained volunteer, who helped him better understand his concerns.
“I think just getting it off my chest was helpful,” he said. “To have somebody just to talk to.”
Within a day, Brown had found the support he needed. The next day, he called up a local lawmaker, Rep. Rosemarie Rung, with an idea: to sponsor legislation to spread the word to other students.
House Bill 35 would require that all student identification cards for public school students in grades six to 12 contain the contact information for the hotline for eating disorders. The bill, which passed the Senate earlier this month, is on its way to Gov. Chris Sununu’s desk.
If signed by Sununu, the bill would create a new addition to student ID cards a year after the governor signed a bill to require that the identification cards include the national Suicide and Crisis Lifeline.
Supporters say drawing a specific focus to disordered eating is essential. Research from the National Institutes of Health has shown that people with eating disorders are at a higher risk of suicide than other populations; giving them resources to help address their eating disorder can also head off future mental health problems and suicidal ideation, supporters say.
And sometimes, individuals are more willing to discuss their eating disorder than their mental health.
Rep. Hope Damon, a Croydon Democrat, knows the issue personally; she recently retired as a dietitian and diabetes educator. In that work, roughly a third of her patients had eating disorders, Damon testified to a Senate committee earlier this year. Many are hard to discern on the surface.
Beyond correlated mental health issues, eating disorders can have physical consequences, too, such as nutrient and electrolytic deficiency, which can lead to cardiovascular risks, Damon said.
“Eating disorders are treatable, and the most important piece I would emphasize with that is that early diagnosis greatly increases the likelihood of a full recovery,” Damon said.
To Brown, it’s an issue he sees other peers face, and one exacerbated by shame and stigma. Frequently, middle and high school students do not feel comfortable speaking to their friends about disordered eating, let alone to their parents, Brown said.
In those situations, having an outside resource to provide answers is key, he said.
The bill is facing one snag: The phone line in question is going to be shut down soon. The association is ending the helpline at the end of May after deciding that it no longer had the resources to provide sufficient services, a spokeswoman said in an interview.
But the association is continuing to maintain a “chatbot” that it launched last year, which allows people seeking help to work through a series of text-based questions and prompts that help them receive information and resources.
That chatbot will likely be what is advertised on the student ID cards in New Hampshire, rather than the telephone line, said Rung, a Merrimack Democrat.
As passed, HB 35 dictates that the service be a telephone number, but Rung said she believes that can be amended during the administrative rulemaking process if the governor signs the bill.
“It’s not so much the text of the bill specifically as much as the legislative intent,” she said in an interview. “So the legislative intent of having this pass into law is that school districts would have to put a contact number on the back of their IDs for people that want more information or assistance with an eating disorder.”
The phaseout of the human-led helpline service, and the renewed focus on the chatbot, came after the helpline was becoming unwieldy to maintain, Lauren Smolar, the vice president of mission at the National Eating Disorders Association, said in an interview.
During COVID-19, interest in the helpline exploded, with calls more than doubling from prior years, Smolar said. The increased demand means some people who call must wait weeks for a response, she said, especially because the organization does not have the staff to keep the line open 24 hours a day. The organization found that 46 percent of the people who called in were not getting their calls answered, Smolar said.
“We were really concerned about the people who are coming to our helpline who were in crisis,” she said. “We really wanted those people to be directly connected with the right support for the needs that they had, especially if it needed active rescues or anything like that”
Meanwhile, the chatbot system has advantages, Smolar said. It is available at all hours of the day, and it allows people who use it to work their way through a “module-based” informational program that can help pinpoint their problems and better recommend potential pathways forward. The technology allows users to receive more sustained information and support – extending for days or weeks if desired – than they could receive during a one-off call with a live volunteer, Smolar said.
And the chatbot, which first launched in January 2022, has already been helping some people who are not ready to have a conversation with a volunteer or clinician about their eating disorder, and would prefer talking to a computer.
“There’s a variety of reasons why people may not be in a place where they’re able to ask for help,” Smolar said. That could include personal discomfort or a lack of finances or health insurance.
Advocates in New Hampshire say the switch to a chatbot-only system does not affect the goals of the bill.
For Brown, the process of talking to a human and being heard was important. But he said he supports the association’s move toward the chatbot, and sees it as a way to broaden who can access the information.
“I think what’s important now is just trying to reach as many people as possible, and if this will help create that barrier of privacy, then I support it,” he said.
Now finishing his freshman year, Brown says his outreach to Rung last summer has kicked off a new interest: public policy. He collaborated with Rung through the fall when the bill was first filed as a “legislative service request” and then took the time to come into Concord to testify before both House and Senate committees.
Some of that time was spent convincing skeptical lawmakers that the identification cards needed another number, Brown recalls.
The efforts were personally driven. His mom, Angela, first found out about the bill in October, months after Brown had first contacted the hotline. Soon, she was driving Matthew to Concord for hearings.
Brown, who is now an ambassador for the Eating Disorders Coalition, a national advocacy group, hopes that school districts will take up efforts for further training for teachers to recognize and help address eating disorders among students. And he says his days as an advocate are likely to continue.
“I think (I’m) just realizing that the legislative process, it can look daunting, and I think it most certainly is,” he said. “But on the other hand, it’s not that hard. If you find an issue that you care about, all you need to do is contact a representative.”
This story was written by Ethan DeWitt, a New Hampshire Education Reporter at the New Hampshire Bulletin, where this story first appeared.
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