The Equal Employment Opportunity Commission (EEOC) is proposing rules that weaken employee protections and violate worker privacy. This is dangerous to those with eating disorders, and we must stop the EEOC.
In essence, workplace wellness programs will be allowed to collect health histories (personal and sensitive information) and tie insurance coverage to arbitrary weight loss requirements, rolling back the legal protections of the Americans with Disabilities Act (ADA). This is dangerous to those with eating disorders and poses a privacy violation to all. And we must share our horror stories of how.
Well-meaning but ill-informed wellness programs
Eating disorders have the highest rate of mortality of all mental illnesses. Much of what well-meaning but ill-informed wellness programs prescribe actually does more harm than good to those who suffer from anorexia, bulimia, and binge eating disorder (BED). By offering incentives tied to weight goals and health metrics not within an individual’s control, these wellness programs can jeopardize eating disorder recovery or trigger those at risk.
Improving wellness for people in the workplace is something we all could benefit from—as long as the definition of “wellness” is broad and inclusive of health and body diversity. While not wholly flawed, the EEOC’s recent interpretation of the law—ACA or “Obamacare”—puts employees, especially those with eating disorders, in jeopardy by potentially:
- Promoting deadly disordered eating behaviors and causing trauma
- Misusing private health information
- Shifting insurance costs from employer to employee through penalties
What can we do?
Submit your story to BEDA
We must share our stories of the harm done by wellness programs.
BEDA is collecting stories about the negative impacts wellness programs have had on those eating disorders, from both the individual’s and treatment provider’s points of view.
Please send your story to Lizabeth Wesely-Casella at Lizabeth@bedaonline.com by June 18 to share with the EEOC and the administration.
We can stop these rules if we put a face to the harms inflicted.
Other ways YOU can affect change:
You can comment on the proposed EEOC amendments to Regulations under the Americans with Disabilities Act:
- Go to the Federal eRulemaking Portal and follow the instructions for submitting comments.
- FAX to (202) 663-4114. Please limit your comment to 6 pages. You may call the Executive Secretariat staff to request confirmation of receipt at (202) 663-4070 (voice) or (202) 663-4074 (TTY).
- Mail to Bernadette B. Wilson, Acting Executive Officer, Executive Secretariat, Equal Employment Opportunity Commission, U.S. Equal Employment Opportunity Commission, 131 M Street, NE, Washington, DC 20507.
- Hand deliver or courier to: Bernadette Wilson, Acting Executive Officer, Executive Secretariat, Equal Employment Opportunity Commission, U.S. Equal Employment Opportunity Commission, 131 M Street, NE, Washington, DC 20507.
Please include the RIN number 3046-AB01 with your comments.
Here’s what’s happening
Let’s say a 45-year-old woman has an eating disorder (which may or may not be asked about on the survey), a BMI of 30, pre-diabetes, and exercises 7 days a week and several times a day. She “volunteers” this information through her wellness program, because she wants the “incentive” of $1200 yearly put toward her insurance by her employer. Her employer paid this prior to the wellness program, however, so it’s a penalty, not an incentive.
This woman completes the online questions and begins to receive emails about obesity, weight management, and diabetes. She also receives an email congratulating her for exercising but tells her she could add several new regimens to her current exercise routine.
Doing more harm than good
You may think this education about health behaviors is good. But, in fact, this wellness program is prescribing eating disorder behaviors to her.
In this case, these “helpful” suggestions are counter to the treatment she actually needs and actually do more harm than good—potentially triggering her to eat more and exercise less, and, thus, gain weight OR eat much less and exercise excessively to the point of serious injury and health complications.
And, because employers have access and rights to employee emails where this information is sent, employers can (and already do) use their email management systems to gather information about emails employees receive specific to health conditions.
Protections under the Health Insurance Portability and Accountability Act (HIPAA), the ADA, and the Genetics Information Nondisclosure Act (GINA) will be diluted. Most wellness programs bought are administered online. There are many examples of ways these programs get around HIPAA laws and sell health information to 3rd parties.
Mixing wellness programs that collect an enormous amount of health information about individuals and insurers is walking a very thin privacy line. Especially when the data is in aggregate form, and many health disorders are not black and white.
Discriminating against minorities and disadvantaged
Those with the least can expect to pay the most: health disparities amongst minorities are well documented. Bypassing HIPAA, the ADA, and GINA make the vulnerable more vulnerable.
“Incentives” (or penalties) will hurt those in lower paying jobs the most, including those with mental illness. These new regulations greatly undermine protections that the EEOC and employment law provide.
Wellness programs that benefit WHOM???
Most often, these programs are designed by consultants charged with increasing the bottom line for both the wellness program and their customers (employers), not necessarily increasing the health of employees.
Significant cost-shifting (to employees) and discrimination practices are well documented in the business community, and big business quickly acted to halt government efforts to hold these companies accountable.
Conflicts of interest
Many of the companies developing and managing wellness programs are subsidiaries of insurance companies–big potential conflicts of interest.
What’s at stake for the eating disorders community?
We are all VERY familiar with the insurance industry’s handling of eating disorders. Severely ill individuals with anorexia, bulimia, BED, and everything in-between have been denied treatment by their insurers because of the cost of care. Lisa Kantor and her law firm Kantor & Kantor can attest to the increasing numbers of cases.
Lack of specialized medical expertise can be deadly
Many of these companies do not have any healthcare experts (MDs) on staff, much less health experts who are trained in eating disorders.
We can all recite several well-documented stories of payer-industry physicians making decisions about illnesses they know nothing about (eating disorders) and the resulting deaths of patients because of denied coverage.
We also know people suffer needlessly for years, because they are not permitted the correct level of care or even primary access to care.
Eating disorders is an area that’s misunderstood and deadly.
So, what can we do? ACT NOW
Submit your stories of compromised recovery to Lizabeth@bedaonline.com.
Thank you for your immediate attention to this serious matter.
Founder, President and CEO