Will the healthcare system save this patient’s life, or end it?
When you have an eating disorder, time is of the essence.
Twenty-eight-year-old Katja Novin understands that, but she’s still waiting at home to die.
Novin was discharged from Beth Israel Deaconess Medical Center three weeks ago after suffering complications to her organs from anorexia nervosa, and has been waiting in an attic in Belmont for her insurance company to approve treatment for the disease that has plagued her since she was 10 years old.
Four mushrooms, four ounces of broth, tea, and black coffee. Those are the things Novin ate the first day DigBoston interviewed her, convincing herself to consume them only so that she could be coherent enough to talk about her situation.
Novin is a recipient of health insurance through Commonwealth Care Alliance, a MassHealth plus Medicare program. While the company has partially paid for hospital visits to BI that are a result of complications of her condition, she has been denied repeated requests during a months-long fight to take advantage of something called the single-case agreement. This part of an insurance policy allows Novin to be seen out-of-state by a provider, one time. She has never taken advantage of it, because she’s never needed it. But with her eating disorder progressed to its extreme, this is the goal.
Novin began restricting food after experiencing sexual and physical trauma. She’s been in and out of psychiatric and eating disorder programs since she was a teenager.
Anorexia nervosa is a physical and psychiatric illness that results in extremely low body weight. People with the disorder fear gaining weight, can have a distorted body image, and often use weight loss as a coping mechanism for significant trauma.
Novin’s appeal for insurance coverage to the Renfrew Center of Philadelphia was initially denied by Commonwealth Care Alliance in September, with the reasoning being her eating disorder could be treated at an in-state facility. But both of the two in-state facilities mentioned by CCA, Walden and Klarman Eating Disorders Center, have declined to admit Novin due to the complexity of her situation. It’s a Catch-22.
Conor Yunits, a spokesman for CCA, said, “While we cannot discuss individual cases, we can say that we work directly with all of our members to explore every option and ensure they are receiving the highest quality of care.”
Renfrew has accepted Novin into its Philadelphia program, which offers specialized residential treatment tracks. Doctors there have the expertise to deal with advanced eating disorder complications that Massachusetts facilities claim to not have the expertise to solve. Novin’s case is also complicated by the fact that she has Crohn’s disease.
Novin, along with medical providers whose records and notes DigBoston reviewed, agree that Renfrew Philadelphia is the best place for her. She said, “They have a high success rate, have a lot of one-on-one therapy, and a trauma track which could allow me to work on the root of my eating disorder. Most places don’t treat trauma.”
Novin was at Klarman Eating Disorders Center from Nov 30 of 2017 to Jan 25 of this year. She told the Dig that “for the first time,” she was properly diagnosed with anorexia and was given a therapist who understood the complexities of her eating disorder. But her elation was short-lived.
According to her medical records, Novin was asked to leave right after beginning trauma therapy. She says it was her first time in trauma therapy and that she was “experiencing a hard time completing 100 percent of my meals.”
Novin was told she could return to the facility in a week. “I begged them not to send me home because I was afraid for my life,” she told DigBoston. “I was medically unstable,” Novin added, describing herself as suicidal, and saying she should have been sent to a hospital “at the very least.”
According to emails reviewed by DigBoston, Klarman administrators declined taking Novin back in for treatment, saying, “Your team has decided not to bring you back at this time. They feel given the complexity of your medical issues precludes you from coming to a Residential program.” Five days later, she was admitted to a hospital for eight weeks, and left with a surgical feeding tube.
That was 60 pounds and 10 months ago.
Repeated requests to Klarman for comment about Novin’s case were answered with the comment, “Due to patient confidentiality laws, we are unable to provide any comment at this time.”
When offered a release signed by Novin to allow Klarman to speak about all details of her medical case, Adriana Bobinchock, public affairs senior director, said, “We’re declining the opportunity to participate in your story.”
Novin cites the denial to return to Klarman as the reason why she decided to enter palliative care this spring. “Before Klarman, I had been told my eating disorder had reached a terminal phase. Klarman was an effort to save me life. When I ‘failed’ at that, then spent two months in the hospital being force-fed … I decided enough was enough. I couldn’t do it anymore.”
Then came a hospital stay in August, during which Novin contracted sepsis. She could have died, but instead she endured, and credits Beth Israel doctors with subsequently “saving her life.”
“I decided I was willing to go back to treatment one more time, and give it my all before deciding to stop treatment,” she explained.
Jumping through hoops
Novin is now three months into that effort and on her third health insurance appeal. The first, to CCA, was rejected. The second, forked over in an “independent review process” to out-of-state for-profit healthcare business process service Maximus, was also denied.
Continuing through that labyrinth, Novin appealed to the Office of Medicare Hearings and Appeals, a part of the US Department of Health and Human Services. A spokeswoman for OMHA sad the office “cannot comment on the merits of an appeal pending before an administrative law judge.”
Novin’s third appeal was initially supposed to be heard in January 2019 by a judge in Kansas City. She’s convinced she will be dead by then. But since repeated requests for comment by DigBoston, the date has been moved to a teleconference hearing on Nov 5.
As time slips by, Novin loses more and more weight, restricting calories and occasionally giving in to the temptation of laxatives. She wakes up with her heart feeling like it’s beating out of her chest. She thinks about therapy and tries to stay distracted. But at this point, it’s mind over matter, and it’s beyond time for a specialized medical provider to step in.
A former nutrition provider also confirmed that Novin’s eating disorder would probably not be as advanced if she had just received the right level of care.
“Her limited access to care is absolutely related to a lack of funding based on her personal finances, which dictate what insurance she has,” the provider said. “Therefore she has been unable to access care in the way that others have.”
“She’s fighting for her life”
Why will this time be any different for Novin? For one, her eating disorder has never been this extreme. And despite the years in and out of treatment, she’s capable of living a life outside of her disease.
Terri Trafas is a licensed clinical social worker who recently consulted with Novin. Due to the severity of her case, Trafas cannot provide the amount of intense therapy that Novin needs. She insisted that Novin has been diligent in advocating for her own patient care.
“She struck me as extremely motivated for treatment,” Trafas said. “The evidence has been how hard she’s worked. It’s like a full-time job.”
Trafas, who has decades of experience working in eating disorder treatment facilities, has seen many instances where patients fall through the cracks because of insurance problems. Novin is not the exception.
“You have to get on the phone and beg them [insurance companies] every day,” she said. “They don’t look at people as individuals and what is needed to recover.” Trafas said it’s common for patients to be discharged early from eating disorder facilities because of limited insurance coverage, only to go home, lose weight, and end up psychologically where they began.
Meanwhile, patients end up in emergency rooms and in long-term hospitalizations, paying thousands more a night than they would during inpatient or residential eating disorder treatment programs that treat the disease, not just the complications. In the past year, Novin has had over 9 hospitalizations at BI.
“When Katja says she’s fighting for her life, I believe her,” Trafas said.
Novin had a year-long period of what most would consider to be remission. In spring of 2016, she and her former partner, now-friend Emma Sturz, travelled to Ohio for a week-long scholarship-funded retreat for people with severe eating disorders. The result was Novin getting a full-time position as a nanny, complying with her meal plan, staying healthy, and leading the active life of a woman in her 20s.
Sturz told DigBoston, “It was incredible. She had a life outside of her eating disorder. She was working, which was fulfilling for her. It’s important for her to feel like she has purpose.” Novin is currently living with Sturz and Sturz’s parents.
“It’s heartbreaking to see her denied over and over and basically be told her life isn’t worth the money,” Stutz said. “And the long hospital stays they’re paying for are far more expensive than treatment.”
A review of Novin’s medical bills and insurance information shows that in the past year, CCA paid more than $2.1 million for her to be hospitalized, mostly at BI. That’s an average of $3,500 a night—plus meds and fluids. The cost of a specialized eating disorder center like Renfrew is about $1,200 a night.
Renfrew has an outpatient facility in Boston, where Novin could continue care in a day program, and eventually just an evening program, once she is medically stable. That costs even less.
To Novin, her friends, and medical providers, the answer seems clear. In an open letter to CCA posted on Facebook in October, Novin wrote, “Please help me save my life.”
This article was produced in collaboration with the Boston Institute for Nonprofit Journalism. If you want to see more reporting like this, please consider making a donation at binjonline.org.