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Paynesville Press - August 29, 2001

Eating disorder death taken to Capitol Hill

By Michael Jacobson

Eleven months after she collapsed to the floor of her Duluth home - killed by heart failure after 11 years with an eating disorder - Heather Henderson's fight against eating disorders and their cultural causes continues.

Recently, the Paynesville native's fight was taken to Capitol Hill in Washington, D.C., by Joe Kelly, the executive director of Dads and Daughters - the nonprofit organization that Kelly and Henderson helped start to improve relationships between dads and daughters.

In late July, Kelly was one of five speakers at a Congressional briefing - sponsored by the Congressional Children's Caucus and organized by the National Eating Disorders Coalition - to speak about the effects of eating disorders. "By telling Heather's story," explained Kelly, "I talked about the (disease's) impact on friends and colleagues."

The briefing was attended by about 60 people, mostly staffers but including at least two members of Congress.

Mental health parity In early August, a new version of a mental health parity bill was passed unanimously by a Senate committee. Heather's story, the Congressional briefing, and the passage of the bill in committee were described in an approximately 1,700-word article in the Minneapolis Star Tribune on Friday, Aug. 3. (The Press asked the Star Tribune for permission to reprint that article but was denied.)

When Congress resumes after Labor Day, Sen. Paul Wellstone (DFL-Minnesota) is hopeful that a new version of the mental health parity will be passed by the Senate, according to Allison Dobson, a spokeswoman for Wellstone.

A new version of the mental health parity law is needed because the original law, authored by Wellstone and passed in 1996, included an automatic sunset date after five years. The new bill should also close some loopholes in the 1996 law, said Dobson.

Parity does not mandate mental health coverage, but requires companies that list mental health coverage - including eating disorders - to offer treatment on par with its other medical benefits, said Dobson.

Minnesota has its own parity law, but 1.6 million people are exempt from this law, according to the Star Tribune. Typically, this is because their company operates in more states than Minnesota.

Wellstone supports the bill because it obviously meets a need, according to Dobson. "An eating disorder is as life-threatening as heart disease," she said. "People who need coverage should get it."

So far, 58 Senators have signed on as co-authors of the bill, including 14 Republicans, said Dobson, indicating its strength. Senate Majority Leader Tom Daschle (D-South Dakota) has said the bill will be a top priority after Labor Day, Dobson added.

A similar - but not identical - bill exists in the House and also appears to have support for passage. Dobson said Wellstone is cautiously optimistic that a bill will be passed by both houses and signed by President George Bush.

Parents' reaction "It's definitely a step in the right direction, but we do have some concerns," said Bill Henderson, of Paynesville, Heather's father.

Without knowing all the specifics of the bill, Bill and Kris - Heather's mother - worry that there still will be loopholes. They wonder if it would have helped them get better treatment for Heather.

"They're going to figure out how to get out of it," said Kris. "That's what I'm afraid of."

"And how watered down will it be by the time it becomes law," added Bill.

As a concession to get more supporters, the exemption from the law for small businesses was raised from companies with 25 employees (as Wellstone originally proposed) to 50 employees. Had that rule been in effect when Heather sought treatment, the Hendersons think it would have exempted them from getting coverage.

While admitting that the initial costs of treating eating disorders and mental illnesses can be staggering, early aggressive treatment that gets the disease under control can save money in the long run, said Bill and Kris. "Maybe they wouldn't have so much treatment down the road," speculated Kris.

Raising awareness Raising public awareness continues to be crucial in the fight against eating disorders. More awareness means more pressure on the laws, insurance companies, and the medical profession to improve their performance when it comes to eating disorders, Heather's parents feel.

Dads and Daughters - which started two years ago with Henderson and Kelly as the only staff - continues to grow. Heather developed a 600-page website for the organization, ran the office, wrote a newsletter, kept e-mail contacts from around the country, and researched a wide range of issues. "It's been very difficult to recover from Heather's death," Kelly admitted.

Though the organization works on a whole range of issues confronting youth and how fathers can strengthen relationships with their daughters, Dads and Daughters has gotten extra exposure through Heather. "Obviously eating disorders are something that have gotten a lot of attention because of the obscene irony of Heather's death," said Kelly.

In Heather's case, a professional advocating against things like eating disorders was killed by what she was campaigning against. "That's a pretty damning indictment about our culture," said Kelly.

"Our kids are paying a really steep price for what our culture is doing to them," he added.

The Heather Henderson Memorial Fund at Dads and Daughters continues to work for the prevention of eating disorders through education and for better access to health care. Currently, it funds Dads and Daughters's membership into the National Eating Disorders Coalition, said Kelly. And it provides free distribution for a healthy body image curriculum for fourth through sixth graders.

A fund-raising hike for Heather's memorial fund will be held at Lester Park in Duluth on Saturday, Sept. 22. A program to remember Heather as a person a year after her death will be held along with a half-hour hike. More information is available at htm or at www.dadsanddaughters. org/hike_or_ heather.htm.

On her last day of work, Heather put some finished grant applications on Kelly's desk right before heading home. One of these grants has come through, and Heather's fiancˇ, Sean Taylor, is helping to coordinate a 16-week pilot program for father and daughter communication in Duluth and Sturgeon Lake.

Heather's parents continue to find solace that the posthumous fight against eating disorders will keep Heather from perishing in vain. "There are so many positives coming out of such a negative event," said Kris.

"It's good to see it continuing," added Bill. "Almost every month something goes on that encourages us."

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