By: Beth Frenkel, Ph.D., Supervising Psychologist
Center for Eating Disorders Care at University of Princeton Medical Center at Plainsboro
Thank you. I particularly want to thank Christina, Jessica and the members of the New Jersey Chapter of Project HEAL for honoring me today and for giving me the opportunity to speak about a cause that is dear to my heart. I have a highly unofficial and long-standing relationship with Project HEAL and I am very proud to be here today to support them today. I have enthusiastically watched Project HEAL grow in scope and provide incredible opportunities for those who suffer from eating disorders. Since 2008, Project HEAL has raised funds to send 11 scholarship recipients for treatment, giving these eating disorder sufferers hope for a healthy future. But unfortunately, this is only the tip of the iceberg.
Eating disorders are horrifying diseases. They destroy minds and bodies; individuals and families. They have the highest mortality rate of any psychological illness – up to 20% of sufferers can die from the effects of their disease.
Eating disorders ARE treatable. While early studies showed a recovery rate of approximately 40% of eating disorder sufferers achieving full recovery, NEDA quotes more recent studies with a recovery rate at 80% for patients who are identified and treated within five years of the onset of the illness. But even for those that fully recover, these illnesses take a terrible toll. They put people through periods of deep despair, intense self-hatred, and profound hopeless. They create serious and sometimes permanent physical damage to bodies. They cost time and opportunity. And, to be quite blunt, they cost tremendous amounts of money.
Now that – in many ways – might be the least important item on this list. But the reality is that treatment of eating disorders requires a multi-member, multidisciplinary outpatient team and it can require higher levels of care and years of treatment. It can be difficult to find in-network providers who have the necessary levels of specialization. Families can easily exhaust their resources attempting to save the lives of their loved ones.
This is where the financial realities come in. What I do – treatment at the inpatient level of care – would just be not possible for most people without insurance companies. The vast majority of families could not afford to pay for inpatient level of care without insurance. But insurance has its limitations. It costs employers a tremendous amount of money to provide insurance to employees and therefore policies may not be as comprehensive as necessary. Small employers qualify for loopholes that allow policies to still have 30 day maximums for mental health coverage, despite parity laws. Numerous policies do not cover long-term residential benefits, often the most important level of care for patients with severe and persistent eating disorders. And do not get me started on insurance that is being called “affordable” and requires a $3000 deductible with 40% co-insurance, with NO MAXIMUM on the out-of-pocket expenses.
Moving past the issues of coverage limits, eating disorders are still often not well understood by insurance companies. While our treatment program follows American Psychiatric Association guidelines, and I suspect many other programs do as well, not all insurance companies follow the same guidelines and they do not provide any empirical evidence to support their individualized criteria. While there is a lack of sufficient research to fully substantiate best level of care practices, what research there is suggests that, if anything, patients do better with longer treatment, not shorter. It can create added stress for sufferers and families to struggle with unexpected de-authorization by insurance companies and have to face the difficult decision to step a patient down before expected or accept the financial burden of paying out-of-pocket for continued treatment. According to a report on the state of South Carolina’s Department of Mental Health website “About 80% of the girls/women who have accessed care for their eating disorders do not get the intensity of treatment they need to stay in recovery – they are often sent home weeks earlier than the recommended stay.”
This is where you all come in. It is probably a safe bet that if you are here today, it is because you know someone who was impacted by an eating disorder or you have endured one yourself. You understand that the monetary cost of the eating disorder is only the beginning of the problem. But if a person or their family cannot address the financial realities of treatment, there is a high risk for ongoing psychological suffering and physical harm. At the Project HEAL Gala in New York last month, Clinician of the Year award recipient and Project HEAL Clinical Advisory Board member Eric van Furth spoke about the importance of “affordable, accessible, durable” treatment for eating disorders. According to research, only one person in ten with an eating disorder receives treatment. By coming here today, you are helping to address that problem. You are providing financial support for someone who could not otherwise pay for treatment to get the opportunity she or he needs to combat this illness. You are giving other families the comfort of knowing their loved one is getting an opportunity to save their life. Thank you for your generosity. Thank you for coming out today to show your support. Thank you for being a part of what has been consistently the single most successful fundraising event of any of the Project HEAL individual chapters – routinely raising between $7-$10,000 dollars in a single afternoon to support ongoing treatment for someone in need.
I want to conclude by quoting two people. The first is Project HEAL’s fourth scholarship recipient:
Dear My Saviors,
I thank you a million times for giving me the opportunity to be a part of [treatment]. This program taught me a lot, made me happy, laugh, smile, grow & live! You are all my role models! It was great to meet people (you) who understand me, and that since you guys all recovered, there’s hope for me also! Thank you so much!
You probably do not know who scholarship recipient number four is; you would not know her if she passed you on the street. You may not have given money to Project HEAL prior to scholarship recipient number four receiving her scholarship. And yet, to borrow from John Donne, you should not ask from whom or for whom that fervent thank you was written. It was written for you. Thank you.