The ACA Has Been A Lifesaver For Those With Eating Disorders — What Happens If It Goes Away?
Millions could be hurt by the GOP’s health-care plans. But one group in particular is often overlooked.
flickr / daniellehelm
This week, the United States Senate again failed to collect enough votes to complete one of President Donald Trump’s cornerstone campaign promises: repealing and replacing the Affordable Care Act. Senate Majority Leader Mitch McConnell has since proposed a vote to simply repeal the ACA without a plan for replacement (he promised a two-year “pause” without more specifics), though that plan doesn’t appear to have the votes required to pass, either. Meanwhile, the President stated that he’d be more inclined to just “let Obamacare fail,” an ominous threat without much substance or policy behind it.
This constant changing of the currents — an uncertain future that has left insurers skittish, local governments scrambling, and patients in fear — is largely due to political disagreements and power struggles between wealthy white men, but its impact is much greater and more deadly than they seem to realize.
The constant changing of the currents on health care is largely due to power struggles between wealthy white men.
Justly, more visible diseases, like diabetes and cancer, receive the lion’s share of the attention in discussions about the devastating impacts of the ACA. But there’s another, less talked-about group who may also die as a result of this politicking — those who are struggling with, and unable to get help for, their eating disorders.
The National Eating Disorder Association (NEDA) estimates that about 30 million people in the United States live with an eating disorder at some point in their life. Eating disorders are not fatal for the majority of those who get help — about 97% of patients who are treated survive — but when treatment is not available, the mortality rate jumps as high as 20%.
The fact is, despite targeted rhetoric about its costliness and general failure, the ACA has substantially increased access to treatment for many patients — and without it, many people with eating disorders would die.
Eating Disorders Before The Affordable Care Act
Though Netflix’s To The Bone made it look easy to get into a cushy in-patient program and stay for months at a time, the reality of eating-disorder treatment is much more bleak for many patients — and was even moreso prior to the adoption of the ACA.
In 2011, a court case in California pushed back on the idea that insurers don’t need to cover in-patient treatment, one of the most aggressive methods of treating eating disorders. The case stemmed from a perception that mental-health issues and physical ailments weren’t being treated equally, a violation of the state’s mental-health parity law and its federal counterpart, The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008.
For years, insurers would cover only a limited number of days — a week, a month — in residential treatment, typically citing the cost; a week at Renfrew, the gold standard of eating disorder treatment, costs over $8,000 per week out-of-pocket. Other insurers flat-out wouldn’t cover any kind of residential treatment, despite recommendations from health-care providers.
Whether residential treatment is the most effective method is up for dispute — and there’s plenty of debate on that exact subject — the fact remains that in-patient treatment is still highly recommended by many doctors and therapists, and can be a lifeline for families who need help.
When You Include Your Eating Disorder On A Medical Intake Form
The ruling, which stated that insurers must strive toward parity of care between mental and physical ailments and thus, provide coverage for residential treatment programs, came down in 2012. NEDA CEO Lynn Grefe called it “a significant victory in the battle against eating disorders that we hope will have repercussions throughout the health insurance industries.”
It did not, however, help establish how patients would be able to access these resources if they couldn’t afford or obtain insurance in the first place. Crucially, despite the significance of the ruling, insurers could still find ways to avoid picking up the tab. Prior to the passage of the Affordable Care Act, they had one very handy tool: pre-existing conditions.
Though “being a woman” is not, in fact, a pre-existing condition, being a woman (or a person of any gender) with an eating disorder is — which means even if a person got coverage once, they could be denied it in the future. That’s challenging when dealing with a disease which tends to take multiple attempts at treatment (and many years) to fully recover from.
Thanks to Obamacare, insurers could no longer turn people away for trying again, and accessing health care was easier than ever.
Eating Disorders Are Expensive For Everyone
Even after the passage of the ACA, though, treatment for eating disorders was difficult to access — making the President’s threat of just “letting it fail” even more frightening.
At the time of the law’s passage, treatment of eating disorders had not qualified as an “essential health benefit” under the new law, despite lobbying from industry professionals. In a letter to then-Secretary of Health and Human Services Kathleen Sebelius, an organization of “more than 35 organizations in the eating disorders education, prevention, and treatment communities” stated their case:
“People with eating disorders experience discrimination in accessing proper treatment and this is a serious obstacle to recovery…According to a 2003 epidemiological study of more than 2000 women, only 1 in 4 white women and 1 in 20 black women who had a diagnosable eating disorder ever received any treatment for their eating disorder.”
Protecting benefits and Medicaid coverage is a matter of social justice. A lack of treatment options and funding methods means that the lethality of eating disorders can be extremely discriminating; if only one in 20 Black women receives treatment, the other 19 are at a much higher risk of death.
Protecting benefits and Medicaid coverage is a matter of social justice.
Reducing access to treatment may also skew research and perpetuate the myriad stereotypes about eating disorders — what they look like, who gets them, and how old they are. One of the most comprehensive ways to collect data about who suffers from eating disorders is to survey those who are getting help. However, when people from marginalized groups — LGBTQ individuals (particularly trans youths), people of color, immigrants, and the very poor, to name a few — don’t have access to treatment, they can’t be counted. The prevalence of eating disorders in poor, rural, and immigrant communities is fairly unknown because they just aren’t getting treatment. Additionally, because these stereotypes persist, primary-care physicians working with these populations may not know the signs or know when to refer someone to care.
The common perception is that eating disorders are private battles fought by thin white women (again, thanks a bundle, To the Bone), but the truth is that they frequently intersect with a whole lot of other issues.
Many eating disorders have nothing to do with restricting and may be masked by other behaviors, substance abuse issues, or trauma. It’s impossible to have conversations about obesity, diabetes, the opiate crisis, or the cost of health care in the United States without mentioning the fact that many of these issues impact and are impacted by the millions of Americans who are living with some kind of eating disorder.
Why We Need More ‘Hunger’ And Less ‘To The Bone’
Offering treatment, then, has far-reaching effects. But the case for offering it goes beyond being the right thing to do. Footing the bill for treatment also does what conservatives have claimed as their goal: saving money.
The sticker shock of a $30,000 per month tab for residential treatment may seem like a lot to a lawmaker looking to make cuts, but consider the cost of not treating those struggling. Again, from the provider letter sent to Secretary Sebelius:
“Consequences of not receiving necessary health insurance coverage include financial ruin for families paying out of pocket, a lack of life saving care, which leads to the worsening of symptoms and in some cases death. Anorexia has the highest mortality rate of all mental illnesses, upwards of 20%. Individuals with anorexia nervosa are 11 times more likely to die than their peers and they are 57 times more likely to die of suicide. Mortality rates are also higher for people with bulimia nervosa (3.9%), and eating disorder not otherwise specified (5.2%).”
Unlike many other ailments, which land sufferers in the emergency room for a round of antibiotics if they’re uninsured, eating disorders are an ongoing, deeply damaging experience that impacts both a person’s physical and mental health. It hinders lifetime productivity, can reduce earning power, and generally perpetuates the gender wage gap. Mental-health issues, particularly those with physical impacts, cost billions in unearned income, creating a cycle of economic despair and expense. They literally make people more poor, thus making them more reliant on social services.
The absence of a functional health-care system — whether that’s single-payer, an improved Obamacare, or something else — is also necessary for the ever-increasing number of children who develop eating disorders.
Yes, many eating-disorder patients are children — between 1999 and 2006, the number of children under 12 who were hospitalized for eating disorders increased 119%. These kids are unable to “go get jobs,” and may be reliant on their parents’ Medicaid, which is also in peril under the GOP’s health-care plan.
The Medicaid expansion portion of the ACA has been monumental for families; in some states, children are the single largest dependents on Medicaid. Meanwhile, children as young as 4 years old report disordered eating patterns that often go undiagnosed because they don’t have access to competent care. The younger these patterns are caught, the better a child’s chance of recovering early.
Repeal, Replace, Fail
There are necessary improvements to the ACA that must be made, but none of them are contained in the proposals coming from Republicans in the House, Senate, or Executive branches.
Each plan put forth by the GOP — from the AHCA to the BRCA to the plan to just plain old repeal — would put people with eating disorders at risk. Cuts to Medicaid spending, reduced coverage for pre-existing conditions, and trimmed mental-health-care coverage would all directly impact the millions of Americans seeking help.
They won’t help bring down the cost of treatment, either; with less insurance or Medicaid funding for eating disorder centers and recovery options, the patients will be expected to pony up. And in the absence of funding, many, many patients will opt not to get help, deferring the cost of treatment to a later date, and potentially dying while they do.
Each health-care plan put forth by the GOP would put people with eating disorders at risk.
McConnell’s two-year pause could also be lethal for patients; recovery is a long road, and many patients who are fortunate enough to be able to afford residential treatment, either through insurance or their own financial stockpile, will need ongoing aftercare. Putting a pause on coverage or temporarily cutting Medicaid will ensure that the long-term care is not an option — significantly increasing a patient’s risk of death.
And as for the President’s promise to “let it fail,” he may be waiting for a while. The ACA is far from perfect and there are still many reasons why treatment is just beyond reach for a lot of individuals, but it is not, as claimed, collapsing — despite concerted efforts from the President to make it so.
Regardless, this is a fight that’s being waged in Washington but fought with the weaponized bodies of people who are disproportionately young, disproportionately marginalized, and disproportionately struggling with other issues. Though the men in ties in the Beltway may view this as a high-level game of chess, the fact of the matter is that the future of the ACA is intimately tied to the future of many Americans who’ve only just got some semblance of hope.
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