By Amy Cunningham, Tanzania
I write as a person who fought and has survived an eating disorder, as a parent of two children who developed anorexia, and as a public health professional.
As an affected person
I developed anorexia at the age of about 16. I recall a period of depression, then a desire to lose weight and beginning a “diet” which essentially meant deprivation and restriction of calories. Within a month or so into university I slipped from ‘healthy eating’ into overt restrictive anorexia; I knew something was not right and self presented to several medical professionals. However, at that time in the 1980s there was essentially no help or understanding of eating disorders as genetically linked, treatable mental illness.
A high performing student and talented musician, I dropped out of university at 18, telling people I was ‘taking a break’ but essentially simply unable to function due to my eating disorder. Over the next few years my illness morphed into binge eating and bulimia. Two years into my illness, when suicidal thoughts scared the functioning part of my brain, I sought help for the first time.
A medical doctor in the US military said I would never recover. Luckily I did not believe him and over the years managed to slowly and systematically manage my eating disorder and finally, recover. It took more than 20 years of intermittent therapy and personal growth, during which time I was married, had children, finished my education and began a successful career in international public health. My recovery path was not one I would advise. It wasn’t early intervention and it didn’t address biology of the illness. It was long, painful, has had health impacts on my body and was very lonely. That said, I was persistent and I DID recover; for those of you still suffering, take heed and work with a talented professional.
As a mother
The second part of my story is about my children and how treatment for eating disorders has changed in the past 20 years. My eating disorder had been several years behind me when my youngest two children developed anorexia. Genetics is clearly at play in my family. One sister, several aunts and likely many others in my family suffer from eating disorders, to my knowledge, and perhaps more. Luckily the body of literature has greatly increased and today we have scientific evidence to help guide treatment.
One of my children developed anorexia at about age 13, beginning with mood changes and then an insistence on vegetarianism, which is a convenient cover for beginning to restrict food groups and calories for those predisposed to an eating disorder. As a parent, if you have any genetic predisposition to eating disorders DO NOT allow or encourage any sort of restrictive eating behavior. It’s a slippery slope. Our medical doctor didn’t take my concerns seriously initially and not until two years later, when she was seriously ill, did her dad (my ex husband) and our doctor take her illness seriously.
As an activist
My activism began in 2013 when my 11-year-old girl (D) also developed anorexia. It came on fast and furious, like a storm, frightening our family and spurring us into action quickly. Despite my own experience years before and that of her older sister, D’s anorexia was a shock and several months passed while we arranged treatment. D changed from the kind and loving child we knew to something unfathomable. Her behaviors and brain changed because of the lack of nutrition.
This time, our family doctor took our concerns seriously. Despite the fact we live in East Africa, I was able to find support from other parents online and learned about the Maudsley Family Based Treatment (FBT) method. I read Brave Girl Eating by Harriet Brown and How to help your Teen Beat an Eating Disorder by Drs. Locke and Le Grange. These books became my bibles for helping my daughter. My family was lucky to find wonderful professionals at University of North Carolina at Chapel Hill (Dr. Stephanie Zerwas) and Prosperity Eating Disorder and Wellness Center (Adrianna Rodriguez) who supported us through the intense refeeding period where D needed a high caloric intake, consumed in six meals a day.
As a family, despite life on two different continents, we worked together to support D’s recovery using occasional in person intensive outpatient FBT and support using telephone an Skype for several years. Today my daughter is thriving, a normal healthy and happy teenage thanks to early intervention, evidence based treatment of rapid weight restoration and also today the addition of an anti anxiety medicine that has greatly assisted her to live a normal life.
Addressing mass misinformation
The third part of this story is how our family experience, and the many others like us, can be used to inform development of a coherent public health response to address eating disorders. When my youngest girl developed anorexia and we began treatment I also began interacting with many parents and recovered people around the world. With several other parents we started International Eating Disorders Action (www.iedaction.weebly.com) in 2013 to address the massive misinformation in the media, corporations and even within the eating disorder advocacy community itself. This successful effort spurred several innovations – one an online 24-7 peer support group called Eating Disorders Parent Support and another, World Eating Disorders Action Day, which we are launching today June 2.
What needs to be done?
In these next few paragraphs I want to share thoughts from a parent perspective and from a policy perspective. My work as a public health professional rolling out systems for addressing HIV in Africa came in handy when I entered the activism arena for eating disorders. The same approach we use to eradicate/manage other health issues can be used to manage eating disorders. First and foremost, the eating disorders response needs a global commitment with World Health Assembly recognition of our day and of the NINE Goals we propose to achieve change. The eating disorders response at country level needs a policy framework to implement a treatment and support system, education program for the target groups, research, training, monitoring and financing. If we use a public health approach to address eating disorders, just as we did with implementing programs to limit childhood poisonings, motor vehicle accidents or HIV, we will start gaining traction.
The 40+ countries involved in World Eating Disorders Action Day are at different stages of response in terms of treatment. Some countries have not a single provider as Dr. Eva Trujillo illustrates in her blog. Some countries like Canada, Netherlands, Norway and Sweden are rolling out eating disorders treatment programs using national health service systems and some private sector engagement. The USA has a mainly private sector health sector with over 150 residential for profit treatment programs, and also several university-based treatment programs building up a portfolio for evidence based services, as well as 1000s of private providers. To my knowledge, not one country has a national policy or strategy for addressing eating disorders.
The ideal approach
What would be the ideal approach to address the 70+ million in need of treatment services? In each country we need to look at a policy and financing framework to reach the LARGEST number of people, using the EARLIEST intervention, with the GREATEST success and the LOWEST cost.
To effect the largest change, the heaviest focus must be on averting entrenched ED by intervening with children and adolescents early, within the first few months after symptoms present (restricting foods and calories, loss of weight, obsession with weight and thinness, anxiety, depression, etc.) and employing FBT/MFT approaches to rapidly restore weight and normalize eating, as well as address other comorbidities. Early intervention will yield the most benefit both for the person with the illness, the family and the health care system. It will also avert longer last eating disorders and those like mine, that morphed from restrictive anorexia for two years to a 20-year marriage with bulimia/BED.
This does NOT mean we ignore those with a more entrenched illness, other types of ED, or older people. We certainly must ensure higher levels of care or different care approaches for this population. But for the biggest impact NOW and for the future we should invest in a public health response that averts EDs at the youngest ages. This would be considered secondary ‘prevention’ as to date we have no evidence of any effective primary prevention for eating disorders.
How do we achieve a public health response for eating disorders?
We know FBT and Multi Family Treatment (MFT) for anorexia and bulimia has strongest outcomes of all known treatments. Yet I’ve heard people say Family Based Treatment/Maudsley for treating eating disorders is often ‘impossible’. And that “not everyone can do it”. I would argue that with the right supports and training of both provider and parent/carer it is certainly possible and hugely beneficial from both a public health perspective, health financing perspective and for the healthy functioning of the family.
The major problem impeding success of this method is:
* Delayed access to diagnosis and care (which should be from 4-6 months or earlier after symptoms present);
* Lack of trained medical professionals to support the family in FBT and
* Lack of supportive family and community system that would Include time off work to manage refeeding and other relatively low cost care supports.
I posit that the vast majority of families would find success in treating their children if access to early intervention with an FBT trained provider, and family/community support for ED treatment were available The public health and costs benefits are huge, and this is ‘low hanging fruit’ that would reduce need for expensive residential stays. In the USA for example there are over 150 for profit centers specializing in eating disorders treatment
Residential treatment system not sustainable
Despite the fact that FBT has shown the highest rate of success for adolescents with anorexia and bulimia very few centers or professionals offer this important approach and only a handful of research institutions train providers in the method. This residential treatment system is not sustainable or rational for a public health response. I challenge centers using residential as the primarily mode of delivery of eating disorders services to invest in training providers in FBT/MFT and early identification for treating anorexia and bulimia in adolescents thereby expanding access, increasing chances of success and saving money.
FBT/MFT as first level of care a priority
The priority for scaling up access to treatment should be increasing access to earliest intervention using FBT/MFT as a first level of care. Only 1 in 10 people with symptoms are estimated to access treatment. With an increase in trained front line providers and greater public awareness about eating disorders, more families will be able to enter into the care system more quickly.
Countries have an opportunity to put in place early intervention systems and family support systems to rapidly intervene thereby averting more entrenched and difficult to treat eating disorders. It’s important to note that there is not a ‘quick fix’ for treating eating disorders. Despite the fact that my D only had 3-4 months of restricting anorexia symptoms it was still a more than two-year path to what I would say is full recovery and this is a common path. Yet she is happy and healthy, the family has been strengthened and empowered through the experience, my daughter has deep insight into her illness and how to manage it. And the cost was approximately 10K over the past three years, a fraction of an inpatient or residential stay.
Making the family the foundation for treating eating disorders, like other mental illnesses and physical illnesses, is the key.
A strategic and correct approach for the existing for profit centers currently providing care for children and adolescents is to scale up access to FBT/MFT (Maudsley) through intensive outpatient programs. Remember the TYPE of treatment is not the same as the modality/location of implementation.
A public health approach would recommend identification of the preferred modality of care based on scientific data AND then use the systems to scale it up to reach the most people in need with the lowest costs. And as children will be returning home sooner or later empowering the family as much as possible through an FBT approach makes sense.
Who is ready to take up the challenge?
From a public health perspective, we must scale up FBT/MFT as a priority for children and adolescents showing signs of anorexia and bulimia.
For existing for profit providers and treatment centers there is a need to ‘do good while doing well’ and they should adopt research based treatment methods rather than hold on to outdated approaches.
For insurance companies an emphasis on early intervention and evidence-based treatment will avert needs for long hospital or residential stays and help improve the overall health of the family structure. We need to make practical and logical decisions to be effective in addressing EDs for a lasting recovery.
Countries that do NOT have an existing inpatient or residential structure are actually in a far better position to put in place family and community systems that work and save huge costs to the health care system. Caveat of course that higher levels of care may be needed for those with more entrenched illness, or complicating health factors. That is also nothing to be ashamed of and families need to be well supported should a higher level of care be needed.
First, a coherent policy framework
First and foremost, we need our governments to develop a coherent policy framework for eating disorder education, training and treatment. This is why we developed World Eating Disorders Action day, to build a platform through which we can effect change at the country level. And even without this national policy framework the existing structures in the US and the newer programs in other countries must ‘do good while doing well’ and establish systems that put the family at the center of the service delivery model.
Establishing solid family and community systems as the foundation for care will not only benefit the patient but also will enable huge costs savings in the health care system.
Take home message
As we roll out World Eating Disorders Action Day today my hope is that we can bring together the best and brightest in this field to partner with the families and affected person to develop comprehensive national systems based on research, evidence and that put families and patients over profits.
The NINE Goals
The NINE Goals are a manifesto for change developed by families, affected people, support organizations, researchers and professionals. These should be evaluated and adopted in each country, led by commitment from the World Health Organization. Read the NINE Goals here: http://worldeatingdisordersday.org/nine-goals-taking-action-against-eating-disorders/
I believe we also must increase our engagement with neuroscientists and pharmacology rather than view eating disorders as being treatable only by behavioral approaches. Research on use of medicines in treatment and management of eating disorders needs to be scaled up and discussed openly. Taking that research to policy and practice is also important.
Patients and families deserve to heal and where medicines can assist they should be utilized. As a field we should encourage ALL disciplines with something to offer to have a seat at the table.
I hope you will join me and the 1000s of others just like me in honoring the first ever World Eating Disorders Action Day today, June 2, 2016.*
Amy Cunningham is a mother of two children who developed eating disorders and has herself also recovered from an eating disorder. She has worked in Africa for the past 16 years managing and guiding HIV/AIDS programs at policy and program levels. She is co-founder of International Eating Disorders Action (www.iedaction.weebly.com), Chair of the World Eating Disorders Action Day Steering Committee 2016, and a member of the Advisory Board for Academy for Eating Disorders. Join Amy on social media to honor all those who have dealt with these illnesses and all who desire systematic change putting families and patients first.
*The thoughts in this blog are mine alone and do not necessarily represent the views of the World Eating Disorders Action Day Steering Committee. Thank you.
Join Amy in supporting World Eating Disorders Action Day. Be sure to follow along on Twitter @WorldEDDay and hashtag #WeDoAct, #WorldEDActionDay, @WorldEatingDisordersAction on Instagram and World Eating Disorders Action Day on Facebook.