The economics of eating disorder advocacy: does it matter who pays?
Although there are occasional grants and foundation funding most ED advocacy depends on the cheerful support of clinics. Although that might seem like a good fit, there are potential conflicts of interest. Just as we need to be clear-eyed about a pharmaceutical company's apparent altruism, we need to think about why ED treatment money might influence advocacy.
Clinics will not support advocacy that conflicts with their business model. Advocacy organizations cannot afford to alienate sponsors.
All this would be harmless if clinics all shared an evidence based model of care. but, they do not. All this could be symbiotic if there were even any minimum standards of care or accountability. It might even work if there were ways for consumers to make good choices between options.
At conferences, exhibitors and sponsors market to referring therapists: offering free trips to tour facilities, giveaways at the table, snack sessions, and ads in the giveaway bags and on the big screen. Rooms and breaks are named for sponsors. At conferences where consumers attend, exhibitors market directly to patients and families with gorgeous displays and welcoming staff. A booth at a conference is expensive, and not a charitable service.
Advocacy organizations need sponsors to exist at scales large enough to have an impact**.
This is an unwelcome thing to say, but this system has an effect on policy. Any suggestion of standards of care will not fly. Questions about evidence-based treatment fall flat. Debates about treatment methods, or the efficacy of outpatient vs. residential care, are really unwelcome. Clear statements on cause, nature, treatment, even definition of eating disorders are non-existent.
So, when I ask myself why we do not have much of those ideas at conferences or in lobbying or public service announcements and campaigns, I think I know why. When I wonder why eating disorder advocacy is mostly toothless, inoffensive campaigns to tell people to love their bodies, I'm fairly positive why. When I observe that most eating disorder treatment, even in 2015, does not involve families and more often than not pathologizes them, I have to question whether there is a reason that is still acceptable despite the evidence that this does not help patients.
I'm not saying that anyone in the treatment world consciously thinks: I don't want standards because I'm going to be exposed. I don't think there is any deliberate policy: keep parents out of treatment because doing so would be more effective and there would be fewer patients in need of ongoing and higher levels of care. I don't think anyone in the system thinks there is a system. I believe everyone, or at least almost everyone, in the treatment world is doing the best possible work they can, and they feel effective.
The problem is: there really is bad treatment out there and our system of policy making and unchallenging advocacy protects it. The need to keep sponsors happy isn't conscious or deliberate but it still has a clear dampening effect on dissent. By agreeing to disagree on what EDs are, and how to most effectively treat them for what kind of people: everybody is free to do whatever they wish. Not questioning other approaches means not being questioned.
Lives are at stake. Questioning treatment needed to happen in other fields and will have to happen in this one. If no one had challenged autism treatment, or the need for physicians to wash their hands, or ulcer treatment, things would not have changed. Anything that makes questioning more difficult serves to slow the rapid advances the eating disorder field can make. If the financing of advocacy holds us back, we need to question that, too.
*+very few organizations in the eating disorder world refuse sponsorships or donations from clinics. F.E.A.S.T. is one of them. As a parent organization we felt strongly that parents be empowered to make their own family decisions about treatment based on science and personal judgement.
The situation in the UK is slightly different in that parents very rarely get to choose between providers. While this does avoid the danger of slick marketing campaigns it means, among many other things, that conferences aimed at professionals usually don't welcome families, and that should a family member decide to attend anyway the financial costs are even higher. Here is the list of invited categories of people from a recent conference in London England http://www.eatingdisordersconference.com/audience and here is the simply eye watering price list http://www.eatingdisordersconference.com/feesReplyDelete
F.E.A.S.T.'s international conferences tried to do the hardest thing: make it affordable without sponsorships. We used budget hotel, set registration at the exact per person cost to put the event on, eschewed gift bags and gewgaws, and asked everyone, including speakers, to pay their own way. It was the right thing to do, but still, it is a luxury to attend an event what with travel and hotel and registration and incidentals. Even if you are only aiming to break even, as we were, it was a stretch for most families.
The ICED2015 conference, later this month, has as its Platinum Sponsor Shire Pharmaceuticals, LLC. www.aedweb.org/ICED2015/index.php Shire is the same company that paid $56.5 million dollars last year to settle an enforcement action by the United States Department of Justice, which charged Shire with overstating the efficacy of Adderall for the treatment of ADHD and promoting Adderall as treatment for conditions for which it had not received approval from the Food and Drug Administration. Several of the leaders of AED have received financial support from Shire, according to the ICED2015 website, including Bulik, Frank, Grilo, Madden, McElroy, Touyz, Tyson, and Zerwas.Delete
Parents might want to be alert to these financial conflicts of interest.
Does anyone really think that these professionals' treatment recommendations are not affected by these financial inducements?