Kristina Saffran was diagnosed with anorexia nervosa before her thirteenth birthday. She made a full recovery, but millions of fellow sufferers aren’t so lucky. Insurance will routinely decline to cover treatment, which is often in excess of $30,000 per month.
At just 15 years old, Saffran and her cofounder Liana Rosenman formed a nonprofit called Project Heal to raise funds to help others with eating disorders access the care they need. Saffran, who is now 24, says their organization raises about $1 million per year from private donors, with a recent influx of support coming from high-profile investors like Arianna Huffington and Uber CEO Travis Kalanick. That might seem like a drop in the bucket by Silicon Valley standards, but Project Heal is one of the largest eating disorder nonprofits in the country.
Mental illness is still a long way from reaching funding parity with other diseases, despite recent policy promises. The approximately 30 million people with eating disorders are particularly underserved. It has been a challenge for those in the advocacy world to attract donors, according to Saffran, as the disease is still widely viewed “as a white girl vanity issue.”
Because of this stigma, the academic community also faces challenges in raising funds for much-needed research. Research dollars spent on schizophrenia, for example, average $81 per affected individual, while the average amount of research dollars per affected individual with an eating disorder is just 93¢, according to the National Eating Disorders Association.
“There’s a fundamental injustice here,” says Tom Insel, the former director of the National Institute of Mental Health, who now works at Verily, formerly Google Life Sciences. Insel also serves as an adviser to Project Heal. “You have what many people think is the most fatal mental disorder (one in five anorexia deaths is by suicide), and yet it’s very difficult to get the evidence-based treatment and the kinds of care that we know work.”
Project Heal is working to rally key players in the academic and technology communities to come up with ways to change public perceptions of the disease, spur new ideas, and do more with limited finances.
“The organization is breaking through silos in the field and reaching companies and stakeholders that haven’t traditionally been involved in advocacy,” says Jenna Tregarthen, CEO of Recovery Record, an app for eating disorder treatment and a Project Heal board member.
One approach is to use mobile technology to monitor patients between treatment sessions. And Tregarthen’s Recovery Record is finding early success doing just that.
The app essentially digitizes the process for patients with eating disorders to track and monitor their symptoms, feelings, and triggers, and shares that data in a user-friendly manner with their clinicians. Previously, the patient would have needed to present a week’s worth of notes to a specialist in person. Thus far, more than 400,000 people have registered for the app, completing upwards of 15 million self-monitoring entries.
Tregarthen, who started the company after watching a close friend suffer from an eating disorder, sees ample opportunities for other technologists to step up. “There are so many issues that need to be addressed, ranging from the stigma to the shortage of trained specialists,” she says. In the coming months, she’s hoping to raise funds to study some of the behaviors and symptoms reported by users in the app, which remain poorly understood.
Saffran says a future goal for Project Heal is to create a virtual community for eating disorder sufferers to connect and share insights about their treatment. For now, the organization is piloting an online program with four of its chapter leaders from across the country who want to be mentors. These people will be trained online and assigned a mentee to video conference and connect with via text and chat. Supervision for this program will also be conducted online, and outcomes will be tracked via the Recovery Record app.
Project Heal is also finding support from the academic community, where researchers are increasingly finding evidence that anorexia nervosa isn’t purely a sociocultural disorder. “This illness has been mislabeled for so long as a choice,” says Cynthia Bulik, founding director of the University of North Carolina Center of Excellence for Eating Disorders. “It is perceived as a product of girls wanting to lose weight to look like models, but that’s simply not true.”
Bulik and a team of researchers kicked off the largest-ever genetic investigation in 2014 to work toward a greater understanding of the disease, and potentially uncover new treatments. The effort involved sequencing the genomes of thousands of individuals affected with the disease, compared to healthy controls. The results of the study will be published in the next year, but Bulik says that she is expecting to find “hundreds of genes of relatively small effect (that) seem to combine in different ways among those with anorexia.”
Bulik is also working with microbiologists at the University of North Carolina’s School of Medicine to delve into the gut microbiome of people with anorexia, and compare it to those who have never been diagnosed with the disease.
Bulik and others say that the academic community who are focused on eating disorders is tiny but starting to grow. “A lot of the conversations we’ve been having with Project Heal and other organizations involve accelerating the field by bringing people in from outside our own spheres,” she says. “That’s how we’re going to be disruptive going forward.”