Eating Disorders: Follow the Money

Eating disorders affect something like 9% of Americans at some point in their lives. They have the second highest mortality rate of any psychiatric illness. An estimated one person dies as a direct result of an eating disorder every 52 minutes. If you had to guess where research funding for eating disorders ranks compared to other mental health conditions, you’d probably guess low. You’d still be too generous.

People have been saying this field is underfunded for as long as I’ve been in it (a long time). At some point the complaint stops landing, the way “traffic is bad” stops landing. Everyone nods and nothing moves. I don’t want to just repeat the stat. I want to talk about why this field has so little money to do the real work necessary in research, advocacy (including legislative and pull-through work), treatment scholarships, and programming (helplines, etc).

A lot of money goes into treatment, particularly the residential and PHP programs that have quietly become private equity favorites over the last decade. I want to be fair about this part, because it’s more complicated than it looks from the outside. VC & PE money has allowed a number of treatment organizations grow, expand access, and reach patients who never would have found care otherwise. That’s real. The problem isn’t that the money showed up. The problem is what it usually demands once it does. Investors want margins, and the fastest way to protect a margin in a treatment business is to staff it with the cheapest clinicians available instead of the most experienced ones. So programs end up churning through newly licensed therapists who leave after a year or two, and the field loses the deep clinical expertise that actually helps people get better, right at the moment it’s scaling up to help more of them.

Meanwhile, the clinicians actually doing this work are largely funding their own expertise, and most of them are doing it without an employer behind them at all, since the majority of eating disorder clinicians work for themselves. The education, the workshops, the supervision hours that make someone genuinely good at treating this population comes out of their own pocket and their own time, the way a gig worker buys their own equipment and hopes the next job covers it. Then insurance pays them so little that a lot of qualified clinicians stop taking it entirely and go self-pay only, just to make a living wage, which prices out many of the families who need them most. And for the ones who do take insurance, there’s laughable compensation and no code, no fee, no compensation of any kind for the hours they spend outside session coordinating with a dietitian, therapist, a physician, a psychiatrist, a treatment team, all the calls and notes and case management that keeps a patient’s care from falling apart between providers. Eating disorder treatment runs on that coordination. Insurers just don’t pay for it, so clinicians absorb it for free, on top of everything else they’re already funding themselves.

Here’s the part that actually makes me angry. It isn’t only the treatment economy. It’s everyone standing outside it who could give and doesn’t. Families of means who’ve watched a child go through this illness and come out the other side, and who could fund nonprofit programming, public policy efforts, treatment scholarships, or research with money that wouldn’t even register as a rounding error to them, mostly don’t (including the founders of treatment centers who made millions selling to VC & PE). Musicians and actors who have talked publicly, sometimes for years, about their own histories with eating disorders, and who have platforms most public health campaigns would kill for, rarely put real money behind the cause the way they will for other issues. I’m not asking anyone to bare their soul publicly. I’m asking why the checkbook stays closed. And then the small donations of $5, $10, $20 from people in the community who are not flush with cash, but give small donations on occasion. Its the same people who donate over and over while everyone else sits on the sidelines.

And then there’s the group no one talks about, which is the people who started something. The clinicians and parents and survivors who spent their own savings to launch an advocacy organization or a nonprofit or a helpline, who ran it out of pocket for years and took no salary because nobody else would help fund it, while the rest of the field that benefited from their work never chipped in. That happens over and over in this space, and everyone seems blind to it while assuming that our organizations and individuals working in them are making tons of money. They aren’t, I assure you. Individuals working on behalf of the field in non-profit organizations work damn hard and deserve to make a living salary. Even when groups pay a living wage, they do not have money for enough staff and therefore very little ever gets done.

Put a number on all of this and it gets harder to look away from. The major eating disorder organizations in this country run on 2-5 million dollars a year, combined budgets that wouldn’t cover a single quarter at most of the mental health organizations working on other conditions, many of which operate on tens of millions annually, some on hundreds of millions. Something is wrong. Something is deeply wrong. This is an illness that kills approximately 27 people a day and steals years of quality of life from millions more, along with everyone who loves them, and we cannot raise money for it. Not because the money doesn’t exist. Because the people who have it, inside this community and outside it, have decided this isn’t where it goes.

Any guesses as to why not? I have several:

I don’t have a gentle way to close this out, so I won’t try to find one. A community that has been touched this directly by an illness this lethal, and still won’t organize its own money to fight it, doesn’t get to be surprised when insurance coverage keeps getting worse and research funding stays flat year after year. We did that. Us. The people who could give and didn’t, the people who could work together and chose not to, the people who let the ones funding this out of pocket keep doing it alone while for profit organizations depend on them to bring together their potential marketing targets for measly sponsorship fees. If this field wants better research, better coverage, better everything, it can start by looking at itself and asking why it never showed up for its own house.

More soon.