LOUISVILLE, Ky. (WDRB) -- Advocates in Kentucky are working to raise awareness about signs, treatment options and resources available for people battling eating disorders.
Dr. Andrea Krause with Norton Children's Hospital said she sees some of the "sickest of the sick" when it comes to children and teenage patients battling eating disorders who end up hospitalized.
"A lot of work needs to be done to know that eating disorders are very prevalent — more prevalent than anyone realizes — because it's not something that people generally talk about," Krause said. "Every case is different, and I've definitely seen kids with very restrictive eating disorders that are very young: ages 9, 10, 11."
In 2020, KRS 210.051 established the Kentucky Eating Disorder Council within the Cabinet for Health and Family Services. Krause, who serves as the council chair, said the group is working to promote education to providers in the state, work on research and come up with ideas for future legislation to help patients.
Krause said Kentucky does not currently have a residential program for eating disorder patients, and many patients must travel out of state for the life-saving treatment they need.
"By not having a residential treatment facility for eating disorders here in this state, that places our kids at a disadvantage," she said.
According to the National Eating Disorders Association, levels of care range from inpatient (where patients are medically unstable), to residential, to partial hospital treatment and to intensive outpatient/outpatient care.
Cheri Levinson, founder and clinical director of the Louisville Center for Eating Disorders and part of the Kentucky Eating Disorder Council, said Louisville's Center for Eating Disorders is the only partial hospital program and intensive outpatient program in the state. She said while virtual options for care have been added since the onset of the pandemic, there are still limited resources in Kentucky, especially for those who live in rural areas.
"We have people who come all over to our program from western Kentucky, eastern Kentucky, all over," Levinson said.
She said the center sees hundreds of patients each week, and it's common to recommend someone go out of state for a higher level of treatment, like a residential program.
"In general, there's a huge gap in rural states, where most of the treatment centers are concentrated either in big cities or along the east coast or west coast," she said.
Erin Dullaghan Jones said she knows this experience all too well. Her teenage daughter, Emerson, was diagnosed with anorexia in early 2021. After a hospital stay in Louisville to help improve her physical health, Emerson went to Arizona where she could get treatment at a residential program for six weeks.
"Louisville, Kentucky, in general, there are just not enough resources," Jones said. "Sending your child away is one of the worst things I've ever had to do."
Norton Children's Hospital in downtown Louisville (WDRB photo).
Jones said this has impacted the entire family.
"It's scary. It's really scary. It's scary to watch them go through it," she said. "It's something that I wish upon no one, but I know a lot of girls and guys are suffering."
Data from Norton Children's Hospital show cases jumped from 37 in 2018 to 136 in 2022, rising every year.
In March, WDRB News learned of plans from Jefferson County Public Schools to file a lawsuit against social media companies, citing negative impacts social media platforms have on students. JCPS said media platform algorithms promote harmful content like violence, eating disorders and self-harm.
"I want better care," Jones said. "I mean, these kids need it. I work in social media for certain clients but then I want social media to go away. I mean, the comparison for kids is just detrimental for what they're seeing on Instagram."
Krause said eating disorder cases were on the rise pre-pandemic but she believes pandemic-related isolation, along with social media use and pressure on kids and teens, all have had an impact on these increasing numbers.
Jones said on top of the fear for her child's health, this illness also takes a large finical toll. But it's something she said she'd invest in no matter what, to help her daughter.
"Now, here's the kicker, insurance doesn't pay for most of this," Jones said. "The cost for parents and families is exponentially high."
According to Jones, bills can add to to $150,000, and some places charge more than $1,000 each day for treatment. She said treating an eating disorder requires a team of professionals including a doctor, nutritionist, therapist and others.
"You would invest in your child in any way to save them," Jones said. "I mean, we didn't even question it. We just said, 'We're going to figure it out.'"
Krause and others on the Kentucky Eating Disorder Council are advocating for more resources within the state for patients. She believes much of the gap in resources and the reason Kentucky doesn't have a residential program is largely because of insurance reimbursement rates.
"... whether you're looking at private insurance carriers or public assistance, the reimbursement rate is much poorer in the state of Kentucky than comparatively to other states that even are close to us," Krause said. "So that's the frustrating thing. You know what they need and how to help them, yet you can't quite get there due to the finances."
Levinson agrees and said training also plays a role.
"I think a lot of it has to do with under-recognition of eating disorders as the big enough issue that they really are," Levinson said. "No. 2 is that it's really hard to get well-trained people who have the training to do eating disorder treatment to come to our state and to stay in our state. It takes a lot of specialty training to be able to treat eating disorders and to be able to develop programs, and so it can be really hard to get providers with that training to come and stay. And then third are the reimbursement rates. So private insurance payers and state-based insurance often will only pay a very low rate for services for eating disorders even though they need really complex treatment with a team of professionals that are highly-trained. So having low reimbursement rates, again, doesn't attract providers."
Elizabet Altunkara, director of education for the National Eating Disorders Association, said Kentucky has fewer resources than surrounding states such as Tennessee, Illinois and Ohio. She said it's difficult to track the exact number of residential treatment facilities across the country because there are often changes with new ones opening. But she echoed that Kentucky does not have one.
"Mostly, we tend to see the residential treatment centers in highly-populated areas," she said. "We know there's a lot of them in California — in bigger states like California — (and) there are some in New York state."
Krause believes it will take a combination of factors to truly make a change over time.
"I do have hope, whether it's increasing resources and having more options for kids no matter what their insurance background is, places we can send kids — whether it's rural or urban — increasing access to any care or whether it's residential treatment or outpatient," Krause said. "Ideally, really, where you want to hit the preventative side of this is to catch these illnesses as they start to present."
She said she'll continue to be an advocate for patients.
For information on the Kentucky Eating Disorder Council, click here. For information from Norton Children's Hospital, click here.
If you or a loved one is struggling with an eating disorder, click here for resources to be directed to the National Eating Disorder Association website.
Individuals can also call or text the National Eating Disorder Association helpline at 800-931-2237.
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