Photo: Getty Images
A Twitter campaign that’s been targeting Blue Shield of California on behalf of a teenager who has had her anorexia treatment denied is serving to highlight a common problem faced by eating-disorder sufferers: Their insurance carriers often do not want to pay the medical bills.
#ApproveSudol is a campaign that’s been ongoing since April 3 — three months after Renee and Tom Sudol received word from Blue Shield, the new insurance company of Tom’s employer, that the $1,000-a-day residential care for their severely anorexic 15-year-old daughter had been denied in favor of a partial-hospitalization plan. They had reportedly been down this road before — with their previous insurer, Aetna, which they had successfully fought through a massive Twitter protest over the same treatment, an approach aimed at a sustained, long-term recovery that was recommended by the girl’s doctor and therapist. And now they’ve been forced put the same public pressure on Blue Shield.
“On January 14, 2016, Blue Shield of California determined that residential treatment was no longer ‘medically necessary.’ They announced that they would pay for 13 days and then expected her to return home and enter a partial hospitalization program,” Renee, a psychotherapist, said in a letter to Pete Earley, an author, journalist, and mental-health advocate who has been championing their cause on his website.
“We were stunned. Jenny still has to have someone with her during her meals. She still is having rigid, obsessive thoughts. Her medicine is still being adjusted. In her present condition, she is still unable to eat a meal with us, her parents, who would be in charge of her aftercare,” she continued. “I know, because we’ve done this four times before, if she comes home now she will eventually go on a hunger strike and we will end up again in the ER. Then she will go inpatient and start the whole process all over again.”
Blue Shield of California did not respond to requests for comment from Yahoo Beauty. But a spokesperson told the the San Francisco Business Times that it “cannot comment on the case due to [federal privacy] requirements” and that the huge nonprofit “has a thorough review and appeals process that includes review by Blue Shield’s medical directors as well as an independent medical review by a third-party physician.”
Photo: the Sudol Family
According to Claire Mysko, CEO of the National Eating Disorder Association, the issue faced by the Sudols is not, unfortunately, rare.
“NEDA receives countless calls from individuals and family members who are having difficulty receiving adequate care because their insurance company won’t cover them,” she tells Yahoo Beauty. “This can prevent families from being able to send a loved one to the level of care they may need, or force a family to forgo saving for college, being able to afford their mortgage, or go into a large amount of debt. For some families, these may not even be options, and so a loved one is simply unable to get the care they need.”
Often, Mysko explains, it is the persistence of stigma attached to eating disorders that gets their treatment challenged by insurers. “A common stigma associated with eating disorders is that they are about vanity and can be cured by simply deciding to eat. Despite the fact that eating disorders have the highest mortality rate of any psychiatric diagnosis, they are often treated as less serious than other conditions. It can be tough for people who do not specialize in the treatment of eating disorders to recognize how much of what appears to be a ‘choice’ is not.”
Before Earley posted his latest story about the Sudols, his post notes, the family had sent a certified letter to Blue Shield, along with 90 pages of documentation from the teen’s doctors explaining why residential treatment is necessary.
“I hate to ask you and your readers for support, but we feel we have no choice but to launch another social media and Twitter campaign,” Renee (who could not be reached by Yahoo Beauty) wrote. “We want Blue Shield of California to provide continuity of care at the level her expert team deems necessary. Not only is this the right thing to do for Jenny; it is the cost-effective solution for the insurer long-term. This treatment merry-go-round of premature release from treatment benefits no one, and will continue if she cannot stay at Oliver-Pyatt [Centers, in Florida] to complete her treatment. Chemotherapy is used until cancer is in remission, not simply until it’s a little better. The same must be true when treating a mental illness.”
That’s true according to law, in fact — the 2008 federal parity law, as well as state parity laws, which call for mental health conditions to be covered by insurance in a manner that is equal to those that are physical. But that doesn’t mean patients don’t often have a fight on their hands; they often win, though, and earlier this year, Blue Shield was ordered by a federal judge to pay $419,000 to the parents of a boy with “disruptive behavior disorder” whom they denied coverage for residential mental health treatment.
So far, supporters of #ApproveSudol have responded by unleashing a slew of tweets directed at Blue Shield.
— Celia (@celiacrobicheau) April 9, 2016
— DirtyLaundry Project (@DirtylaundryP) April 9, 2016
— Leslie K. (@mauiplumeria8) April 9, 2016
— kebtalk (@KEB3333) April 9, 2016
As Mysko notes, “Difficulty with insurance coverage is a common and complicated issue. People with eating disorders often require care in both the medical and mental health arenas, which makes it difficult for insurers to use simple guidelines like weight gain or reduction in binge or purge episodes as evidence of wellness. Additionally,” she says, “the complex nature of eating disorders and their interaction with myriad co-morbid conditions often exceeds the expertise of insurance company reviewers who have never met the patient and are tasked with making determinations about treatment coverage.”
Or, as Renee asks regarding her daughter’s treatment denial in a recent tweet: “Does the future of healthcare include letting anorexia patients die?”