Diseases of the rich and famous

Key Points

Although it's been nine years, Jeff Pearson, DO, clearly remembers hearing actor Stephen Furst speak about his battle with diabetes at the 2001 annual convention of the American Osteopathic Association.

Furst, a spokesman for the American Diabetes Foundation, is best known for his roles as Flounder in the movie "Animal House" and Vir in the television series "Babylon 5." He told audience members how he narrowly had avoided having his foot amputated a few years earlier, and about the changes he then made to his diet and lifestyle.

"Probably because he's an actor, he was very eloquent," recalls Pearson, founder of the family and sports medicine practice Medicine-in-Motion in San Marcos, California, and Medical Economics editorial advisory board member. "He was diabetic, had been obese, and could talk about what it was like growing up like that. He had been there and done that."

When it comes to drawing a crowd, attracting media attention, or raising money, few tools are more useful than the presence of an actor, athlete, prominent author, or anyone well known to the public. The Head and Neck Cancer Alliance (formerly known as the Yul Brynner Head and Neck Cancer Foundation) uses the actress Brett Butler and former Notre Dame University football coach Lou Holtz, among others, to draw attention to Oral, Head and Neck Cancer Awareness Week (OHANCAW), which takes place every year in April.

"If I call a reporter or editor to pitch a story on OHANCAW, they'll treat it as just another disease of the week," says Jeff Hoyak, president of MCS Healthcare Public Relations in Bedminster, New Jersey, which frequently works with organizations seeking to raise public awareness of diseases. "If I call that editor with a Lou Holtz or Brett Butler for that same story, suddenly they're paying attention. Celebrity involvement really enhances media interest."

EXPERIENCE WITH DISEASES

The American Academy of Family Practice (AAFP) 2008 annual meeting featured as part of its keynote session the actresses Sally Field and Patty Duke; Grace Anne Dorney Koppel, wife of TV journalist Ted Koppel; and former Miss America Nicole Johnson, MA, MPH.

Field, who appears in advertisements for the drug ibandronate sodium (Boniva, Genentech), spoke about her experiences with osteoporosis; Mrs. Koppel, a spokeswoman for the National Heart, Lung, and Blood Institute's "Learn More, Breathe Better" campaign, discussed chronic obstructive pulmonary disease; Duke spoke about bipolar disorder; and Johnson, a former board member of the American Diabetes Association, spoke about her experiences as a patient with Type 1 diabetes.

The speakers were chosen to reflect the assembly's annual clinical focus, which for 2008-2009 was chronic disease management. Brad Fox, MD, chairman of the 2008 assembly and a family practitioner in Erie, Pennsylvania, says, "We asked [the guest speakers] just to tell us who they are, what their experience has been with diagnosis and treatment, what their physicians did that was right or not right, and what advice they would give to doctors taking care of patients in their situation." All speakers received an honorarium.

Fox adds that audience feedback was overwhelmingly positive. "Everyone who spoke to me afterwards thought [having the speakers] was a great idea," he says. "They really liked hearing Nicole Johnson's story about being told she would not be able to do anything because she was diabetic, and passing out during the Miss America pageant. Her experience really seemed to make people think."

Johnson, winner of the pageant in 1999, frequently speaks about her experiences with diabetes treatment and management. She advised audience members to work on their communications skills.

"Healthcare professionals need to understand and get training in different communication styles so they can be sure their patients will hear them," she says. "And they need to understand the psychology of a disease that is never going away, and what it's like to grapple with it multiple times each day."

Thaddeus Bort, MD, chairman of the Family Medical Group in Cincinnati, was impressed with Duke's account of her struggle with bipolar disorder. "She wasn't just a talking head. She had lived this and was communicating the message, 'Hey docs, this is something you're seeing in your office, and you may be missing it.' I thought that was very helpful," Bort says.