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Family fights to get treatment for anorexic daughter
Albuquerque Journal - 4/16/2018
Some things she does not want me to print, things that seem important to point out when discussing the eating disorder she has struggled with for 14 years.
Things like how much she weighs, how much she eats.
Those things, she worries, could trigger others with anorexia nervosa, a severe self-starvation scourge considered the deadliest of all psychiatric disorders, because one in five afflicted die either because of complications of malnutrition or suicide.
“We compare a lot in this population,” Brittany Steffens, 32, explains. “If someone reads that I have anorexia nervosa and I say how much food I eat, they might say, ‘Oh, gosh, then I am eating too much compared with her.’ Or if I give out my weight, they might say, ‘I’m fatter than her. I need to lose more.’”
She’ll admit only that she eats the same food at the same specific time every day. It is after 2 in the afternoon when we talk and she has yet to take a bite.
What she and her family do want to talk about is the misunderstood and deadly anorexia nervosa and how in New Mexico few resources are available to treat it. Only one, the Eating Disorders Treatment Center in Albuquerque, offers outpatient therapy and a partial hospitalization program but no residential treatment.
It’s the latter that Steffens, her longtime therapist and her dietician say she needs.
Even if a local residential treatment center existed, it’s a benefit not covered for members over 21 under Blue Cross Blue Shield Centennial, the Medicaid provider Steffens has.
“It just makes you shake your head,” said Brittany’s father, Larry Steffens, who estimates that he has already paid more than $700,000 over the years for her care. “It’s like, what are we supposed to do, sit here and wait for her to die because she can’t get the appropriate treatment?”
The Steffens family wasn’t about to let that happen.
For six months, they’ve called, written, argued and pleaded with Brittany’s case manager and supervisors for help. They contacted lawyers, disability rights groups, me.
“Every day, we worry that we’ll get a call that we’re too late,” Larry Steffens said. “This is as much about Brittany as it is about bringing awareness to the complete lack of mental health care coverage/support/benefits available to residents in New Mexico.”
And, then, finally, miraculously, coincidentally or something else, Brittany got approval to be seen at the Center for Change, a residential treatment facility in Utah. She arrived there last Tuesday.
So here is Brittany. Like her younger sister, she was a healthy, athletic girl who participated in track, gymnastics, cheerleading and equestrian sports in Chicago. To her father, she seemed to have no issues with weight or depression.
Slowly, though, after high school there were troubling signs. Traces of vomit were found in Brittany’s toilet. Spots of blood, a sign she was cutting herself, started to appear on her bedsheets. Her weight dropped, her health failed to the point that she once had to have a feeding tube installed to force-feed nutrients.
She was diagnosed with anorexia nervosa, which afflicts 200,000 people in the country each year, and entered treatment. By her count, it was the first of 25 times she has been treated for the eating disorder, depression or self-harming,
“I know I’m sick; I know I need help,” she said. “I’m malnourished. I can’t think or remember things. I feel like I’m in a daze all the time. I’m weak, just exhausted, like it’s a slow death.”
Treating anorexia is not as simple as ordering a burger. Like any psychiatric disorder, it is a complex issue requiring intensive and long-term therapy and behavior modification and that before malnutrition takes too heavy a toll on her major organs, her bones, her heart.
Every 62 minutes, at least one person dies as a result of an eating disorder, according to the National Association of Anorexia Nervosa and Associated Disorders.
“You think that all it would take is for her to eat,” her father said. “But her brain is wired in such a way that she just can’t get past that.”
Brittany moved with her parents last summer to Albuquerque and began spiraling downward after her beloved dog, Bailey, unexpectedly died. Because she was unable to work and because she is too old to be covered under her parents’ insurance, she qualified for Medicaid.
Because she had Blue Cross Blue Shield in Illinois, she enrolled in the BCBS Centennial in New Mexico. That’s when she learned there were no inpatient centers in the state and no coverage. And that’s when the family started fighting to save her life.
Janice Torrez, divisional vice president of external affairs and chief of staff at Blue Cross Blue Shield of New Mexico, insists that Brittany’s case managers were working with her in seeking care but that she turned down other options.
But those options included psychiatric facilities that do not specialize in eating disorder treatment or therapeutic options that are not at the level she required.
Torrez also said Brittany did not have a local provider, such as a therapist, to advocate for her. Brittany’s therapist, for example, is in Illinois and is paid out of pocket.
The next step, then, was for Blue Cross to make an “in lieu of services” request from the state Human Services Department to cover services not in Brittany’s benefits package. That, Torrez said, was approved and negotiations began with the various out-of-state treatment centers. Everything came together shortly after I began making calls, though Torrez could not say whether the process in this case took longer than usual.
“I can understand how folks get frustrated,” she said. “But it’s important to note there is a process.”
And so there is. The trick is getting it to work before a life is lost.
UpFront is a front-page news and opinion column. Comment directly to Joline at 823-3603, jkrueger@ abqjournal.com or follow her on Twitter @jolinegkg. Go to www. abqjournal.com/letters/new to submit a letter to the editor.
Eating Disorders Treatment Center in Albuquerque:
On Facebook or eatingdisordersabq.com
National Eating Disorders Association:
Helpline 800-931-2237 or nationaleatingdisorders.org