Our vision for Equip

Category: About Equip
Author: Kristina Saffran

My family around the time of my diagnosis


I was diagnosed with anorexia when I was 10. It sometimes surprises people that I was so young, but it’s common—eating disorders are brain disorders—and I come from a family steeped in anxiety, depression, and addiction1,2.  When I was 10, my babysitter went on a diet and I decided to try it with her—leading me to a struggle with anorexia that lasted through my teenage years and almost killed me.

My eating disorder reached its strongest point during my freshman year of high school. That year, I was hospitalized four times for a total of seven months.  And though this may sound bizarre: I loved treatment.  It was safe. It was easy. I was with people who understood me.  And I didn’t have to deal with freshman year of high school, my parents fighting, or any other real life triggers.  The hard part was coming out and maintaining recovery in real life.   Unsupervised, I habitually reverted back to old behaviors, lost weight, and ended up back in the hospital—where I wanted to be.

My parents lived in a terrified state for years.  Quality information about eating disorder treatment is hard to come by, specialist providers remain scarce, and it’s not often reimbursed by health insurers.  When I started to relapse after my fourth hospitalization, my parents gave me a choice: you can spend three months at a residential facility out west, or you can stay home and try a treatment where we get involved.  At the time, I wanted nothing more than to go to residential.  But I remember thinking: I just missed my entire freshman year of high school to be in treatment. If I miss sophomore year too, I might never get better.

So I spent my sophomore year of high school doing Family Based Treatment (FBT), and it saved my life.  FBT is an outpatient behavioral treatment where families play a critical role in the recovery process—preparing, plating and supervising all meals and monitoring for eating disorder behaviors like vomiting or over-exercising3.  To be clear, I hated it.  Eating disorders are tough to treat because not wanting to get better is part of the illness4.  Specifically, people with eating disorders are terrified of gaining weight, and weight gain is almost always essential to the healing process5.  It was one of the most challenging years of my family’s life, and undoubtedly, it was the thing that got me better. In hindsight, my eating disorder compulsions were so strong that it would have been nearly impossible to do alone. With the support of loved ones, the more I ate three meals and three snacks a day and maintained a healthy weight, the less scary it became. At the same time, because I was back in high school, I started to develop friendships and hobbies to drown out the eating disorder, and there were real consequences to relapsing.

Towards the end of that year, as I grew stronger in my recovery, I learned that 77% of the 30 million Americans who suffer with eating disorders never receive treatment6.  The injustice was as visceral to me then as it is now—eating disorders have the second highest mortality rate of all mental illnesses, yet finances and other barriers prohibit the majority of sufferers from accessing life saving care7,8. I cofounded Project HEAL in 2008 to raise money to fund eating disorder treatment for those who couldn’t afford it.  

Two years into our founding, as a psychology major in college, I dug into the research on eating disorder treatment—and learned that much of what is practiced in the community has no basis in research9.  I learned that residential treatment settings were becoming the go-to treatment for adults and adolescents alike, despite no data on their effectiveness10.  Over the past 13 years, I’ve watched people that I was in treatment with at age 15 cycle in and out of these treatment centers.

The research was also clear that FBT, the treatment that had saved my life, was the gold standard, but wasn’t accessible to the majority of the population3. Most eating disorder therapists have not been trained in FBT, leading to what my cofounder Erin calls “treatment that feels good, but not treatment that works”.  FBT as originally envisioned is also, frankly, pretty burdensome for parents.  Preparing and supervising 21+ meals and snacks a week is time consuming, and shuttling your child to multiple appointments a week can be impossible for working parents and those with other kids. FBT hasn’t been rigorously studied or adapted for people of color, people in larger bodies, and LGBTQ individuals (who we know suffer from comparable rates of eating disorders)11, 12, 13And insurance almost never covers FBT, so it’s out of reach for most working class Americans. 

In addition to being inaccessible, it lacks the thing that keeps people engaged in treatment—other people who’ve been there.  FBT got me into recovery, but it was peer support that kept me there. I needed someone who could vent with me when I returned to high school and all of my friends were dieting, and then tell me that I absolutely couldn’t go down that road. I needed someone who had been in my shoes and was living proof that recovery was possible and worth it.  And my mom and dad needed that too.

I started Equip to make gold standard eating disorder care accessible to all people.  We took the vital core of FBT—empowering families to feed their loved one and get them into recovery—and expanded upon the model by providing peer and family mentors, along with wraparound medical, therapeutic and dietary support.  We’ve made Equip virtual, so you can arrange treatment to fit your entire family’s schedule and needs—instead of upending your family to fit treatment or sending your child away from home.  And we’re partnering with forward thinking payers to cover this treatment—because families shouldn’t have to pay out of pocket.

I started Equip so that no more parents have to bury a child.  It’s unconscionable that one person dies by an eating disorder every 52 minutes when we have treatments that work14.  It’s unconscionable that so many of my peers have spent the last 15 years of their lives cycling in and out of treatment centers.  It’s unconscionable that so many families spend hundreds of thousands of dollars on treatments that don’t work before they learn about evidence-based treatment.

I started Equip because neurobiologically-based brain disorders that cause you to act out of your values require assistance from families (blood or chosen)—and families need training1.  I started Equip because you can’t build a life worth living if you’re away from home, not living life.  I started Equip because you can’t get better with talk therapy that doesn’t account for the neurobiological and physiological underpinnings of eating disorders, or with providers who don’t make treatment safe for people of all genders, ethnicities, and shapes and sizes1,14.

Most of all, I started Equip because eating disorders are treatable and full recovery is possible.  In fact, people with eating disorders share powerful temperament traits that can be channeled in positive and life changing ways when they’re given access to treatment that works15. I’m living proof.




References


1. Klump, K. L., Bulik, C. M., Kaye, W. H., Treasure, J., & Tyson, E. (2009). Academy for eating disorders position paper: eating disorders are serious mental illnesses. The International journal of eating disorders, 42(2), 97–103.
https://doi.org/10.1002/eat.20589

2. Holland J., Hall N., Yeates D.G.R., Goldacre M. Trends in hospital admission rates for anorexia nervosa in Oxford (1968–2011) and England (1990–2011): Database studies. J. R. Soc. Med. 2016;109:59–66. doi: 10.1177/0141076815617651

3. Couturier J, Kimber M, Szatmari P. Efficacy of family-based treatment for adolescents with eating disorders: A systematic review and meta-analysis. International Journal of Eating Disorders. 2013; 46:3–11.
https://doi.org/10.1002/eat.22042

4. Gregertsen EC, Mandy W, Serpell L. The Egosyntonic Nature of Anorexia: An Impediment to Recovery in Anorexia Nervosa Treatment. Front Psychol. 2017;8:2273. Published 2017 Dec 22. doi:10.3389/fpsyg.2017.02273

5. Marzola, E., Nasser, J. A., Hashim, S. A., Shih, P. A., & Kaye, W. H. (2013). Nutritional rehabilitation in anorexia nervosa: review of the literature and implications for treatment. BMC psychiatry, 13, 290. https://doi.org/10.1186/1471-244X-13-290

6. Forrest LN, Smith AR, Swanson SA. Characteristics of seeking treatment among U.S. adolescents with eating disorders. The International Journal of Eating Disorders. 2017 Jul;50(7):826-833. DOI: 10.1002/eat.22702.

7. Chesney E, Goodwin GM, Fazel S. Risks of all-cause and suicide mortality in mental disorders: A meta-review. World Psychiatry. 2014; 13:153–160.
https://doi.org/10.1002/wps.20128

8. Johns G, Taylor B, John A, Tan J. Current eating disorder healthcare services - the perspectives and experiences of individuals with eating disorders, their families and health professionals: systematic review and thematic synthesis.
BJPsych Open. 2019;5(4):e59. Published 2019 Jul 12. doi:10.1192/bjo.2019.48

9.von Ranson KM, Wallace LM, Stevenson A. Psychotherapies provided for eating disorders by community clinicians: infrequent use of evidence-based treatment.
Psychother Res. 2013;23(3):333-343. doi:10.1080/10503307.2012.735377

10. Accurso EC, Le Grange D, Graham AK. Attitudes Toward Family-Based Treatment Impact Therapists' Intent to Change Their Therapeutic Practice for Adolescent Anorexia Nervosa.
Front Psychiatry. 2020;11:305. Published 2020 Apr 23. doi:10.3389/fpsyt.2020.00305

11. Udo T, Grilo CM. Prevalence and Correlates of DSM-5-Defined Eating Disorders in a Nationally Representative Sample of U.S. Adults.
Biol Psychiatry. 2018;84(5):345-354. doi:10.1016/j.biopsych.2018.03.014

12. Marques L, Alegria M, Becker AE, et al. Comparative prevalence, correlates of impairment, and service utilization for eating disorders across US ethnic groups: Implications for reducing ethnic disparities in health care access for eating disorders.
Int J Eat Disord. 2011;44(5):412-420. doi:10.1002/eat.20787

13. Feldman MB, Meyer IH. Eating disorders in diverse lesbian, gay, and bisexual populations.
Int J Eat Disord. 2007;40(3):218-226. doi:10.1002/eat.20360

14. Deloitte Access Economics. The Social and Economic Cost of Eating Disorders in the United States of America: A Report for the Strategic Training Initiative for the Prevention of Eating Disorders and the Academy for Eating Disorders. June 2020. Available at:
https://www.hsph.harvard.edu/striped/report-economic-costs-of-eating-disorders/

15. Atiye M, Miettunen J, Raevuori-Helkamaa A. A meta-analysis of temperament in eating disorders. Eur Eat Disord Rev. 2015;23(2):89-99. doi:10.1002/erv.2342