Mother fights for eating disorder insurance coverage

AddThis

Editor’s Note: This is the second in a three-part series about people who have been affected by eating disorders. Because of the mental state of the subject during her disorder, some dates and concrete numbers are not clear.

Every time local writer Susan Feldkamp looked into her daughter Sarah Whitworth’s eyes, she saw a perfect child.

Whitworth was part of the school dance team, got straight A’s, had a lot of friends and a good relationship with her parents. Feldkamp never anticipated the day when other people would stare at Sarah, not because she was a dancer but because she was starving, her muscles wasted away by severe malnutrition.

At 15 years old, Hays High School student Whitworth was diagnosed with anorexia nervosa and obsessive-compulsive disorder.

Feldkamp said when Whitworth lost weight rapidly after a jaw reconstruction surgery in 2003, her family started to suspect she had an eating disorder.

Whitworth could not eat much for a few weeks after the surgery and lost about five pounds in recovery, which was normal — the problem was that she kept losing.

“There’s a pattern with starting to avoid food,” Feldkamp said. “You hear things like ‘I don’t have time to eat, I’ll eat later,’ or ‘I’m going to go to Katie’s house; she’ll have food over there.’”

Whitworth remembers having her first abnormal thoughts about food one year before her surgery when she was in eighth grade and on the school dance team. Although she was never a big girl, being in a leotard around her peers made her feel extremely self-conscious.

Intent on losing two pounds, Whitworth gave up chocolate for Lent, which started her self-imposed food restrictions. She said the time was particularly hard because her parents trusted her and didn’t take action right away.

“People would go up to them and say, ‘Why are you not doing anything? You’re sitting here watching your daughter starve herself,’” Whitworth said. “At the end of the day, it wasn’t something they could control, and they couldn’t have done a better job than what they did.”

Despite the food restrictions, Feldkamp and her husband didn’t take Whitworth’s behaviors seriously until that summer when, in addition to her restrictions, Whitworth began to run for extensive periods every day in 100-degree weather.

Feldkamp tried everything she could to get Whitworth to come inside, including following her in the car and talking to her on the phone while she ran, but nothing worked. Her mother soon learned Whitworth’s route and began to leave cups of ice water along her trail so she would not get dehydrated.

“I was terrified that I was going to wake up one morning, go into her room and find she was dead,” Feldkamp said. “I hated the disease, and I loved her, and I wanted the daughter back that I knew and loved.”

At home, Feldkamp said the family was always cautious and constantly worried about Whitworth. Whitworth would eat only one Popsicle after her runs, and the rest of her diet consisted of beef jerky, peanuts, salads, grapes and apples.

After visits to a dietician and a therapist produced no improvement, Feldkamp and her husband, Gene Whitworth, took a resistant Sarah Whitworth to see local eating disorders specialist Edward Tyson in 2004. After an electrocardiograph exam, Tyson found that Whitworth’s heart was damaged and had shrunken, a sign of severe malnutrition. People with small hearts have abnormal heart rhythms and are at risk for sudden death if the heart stops working.

Feldkamp and Gene Whitworth immediately began to work with Tyson to try to get Sarah Whitworth to accept her disorder and begin eating again to build up her heart muscles.

“They were very scared at that point,” Tyson said, who has spoken publicly with the family about eating disorders many times. “Their daughter was restricting tremendously and exercising voluminously, [but] they weren’t just worried about her losing weight. They were worried about her dying.”

In the middle of Whitworth’s treatment, the family’s insurance company told Feldkamp they would no longer cover visits to Tyson because he was out of their Health Maintenance Organization network, a nationwide employer insurance system that sets up and provides a variety of doctors at a reduced price.

The company also said it would not cover treatment because in Texas, eating disorders are not listed as a serious mental illness such as depression or OCD.
The insurance company instead said it would cover costs for treating Whitworth’s OCD, as long as she saw a psychiatrist within the company’s network. After failed treatment with the psychiatrist, the family switched back to Tyson and paid for treatment out of pocket.

Fueled by her uncontrolled running and restrictions, Whitworth’s condition worsened, and in 2004, Whitworth passed out because of low blood sugar levels while driving her father’s pick-up truck. She crashed the vehicle with her 11-year-old sister inside.

Gene Whitworth and Feldkamp took out $32,000 from their retirement fund and sent Sarah Whitworth to the Center for Hope, a specialized treatment center in Nevada not covered by their health insurance. Although the car accident convinced Whitworth she needed to get help, she fought the family at their hotel room in Nevada and forced her parents to physically remove her.

“Once I got to the center, I told myself, ‘Sarah, you’re here and your parents are spending $900 a day to have you be here,’” Whitworth said. “‘Don’t waste their money if you’re not going to do it.’”

Whitworth said she remembers her mother calling countless politicians, such as former Rep. Patrick Rose, D-Dripping Springs, and insurance companies to try and get coverage for her treatment. She said she felt inspired to recover when she saw her parents’ determination.

Whitworth was at the center for 10 weeks and rejoined her family in November 2004. She has since recovered, graduated from the University of North Carolina at Chapel Hill and found a job in Florida. The family fought a long battle to get reimbursed by the insurance company and in the end, got back 15 percent of the $70,000 dollars they spent on Whitworth’s treatment.

After the reimbursement, Feldkamp went on to the Texas Legislature to fight for insurance coverage for eating disorders. She became an active member of the Austin Foundation for Eating Disorders, talking publicly about her struggles as a parent in hopes of inspiring parents to recognize the symptoms and get help early.

“There are so many parents out there who are going down this road, and it’s a very lonely road,” Feldkamp said. “I want people to know that there is help available and that they should pursue it and not give up, even if the first doctor they go to doesn’t know about eating disorders.”