Celebrities' diseases grab public spotlight

Stars can raise research money and awareness, reduce stigma and encourage people to be tested and treated.

By Victoria Stagg Elliott, amednews staff. April 15, 2002.

When Pamela Anderson announced last month that she was being treated for hepatitis C infection and claimed that she contracted the virus by sharing a tattoo needle with her ex-husband Tommy Lee, people around the country were flooded with information about a stigmatized disease that rarely gets media attention.

Calls to the Hepatitis Foundation tripled. Doctors say they received more inquiries about testing. And, patients being treated for the disease felt a little less isolated.

Stars struck
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"It's very good because the disease has such a stigma," said Douglas Dieterich, MD, vice-chair of medicine at Mount Sinai School of Medicine in New York. He once had hepatitis C but has since recovered.

"Everyone associates liver disease with either alcohol or drug use, and it's not always that. It's actually quite common among the medical profession because we get needlesticks."

One of many

Anderson is not the first star to bring a disease to the fore. She's not even the first to talk about hepatitis C. Naomi Judd beat her to that years ago. But like many celebrities, Anderson's revelations can alter the disease's image.

Rock Hudson died of complications related to AIDS, and the disease went from being a pariah to a fashionable cause. Michael J. Fox, Christopher Reeve, and Mary Tyler Moore have also used their clout to speak before Congress and raise money and awareness regarding their respective causes. Even Pope John Paul II has gotten in on the act, launching the first global campaign about colorectal cancer.

"Celebrity is very powerful," said Ann Zerr, MD, medical director of the Indiana University National Center of Excellence for Women's Health in Indianapolis.

Celebrities can even influence medical decision-making. When Magic Johnson announced he was HIV-positive, demand for testing skyrocketed. And, when Nancy Reagan talked about her decision to have a mastectomy to treat her breast cancer, breast conserving surgery dropped 25% in the months after, according to a 1998 JAMA study.

Experts agree that celebrities can sometimes humanize a disease, reduce its stigma and increase its research funding. But their success depends on how they handle their position. The jury is still out on Pamela Anderson. For now, she is being credited with quickly raising public understanding of how the disease is transmitted. Fox, Reeve and Moore have set up their own foundations or participated heavily in organizations which will also raise money for the cause. Magic Johnson is praised for being a role model.

"It depends on the celebrity and how that person decides to play up their illness," said Margaret Koziel, MD, a hepatitis specialist at Beth Israel Deaconess Medical Center in Boston. "It can be positive if [they] step forward and convince people to be tested. If Pamela Anderson is undergoing treatment and she's public about the details of that, it demystifies that process and that could be very good."

But, while fame can open doors and wallets, experts caution that the message is as important as the messenger. Suzanne Somers spoke publicly about her own battle with breast cancer. But her openness was also controversial because her treatment of choice -- mistletoe extract -- was an unorthodox approach of questionable value.

"There's a danger in it as well if they're going for the nontraditional treatments," said Dr. Dieterich, who is also chair of the scientific advisory board for the American Liver Foundation. "I don't have any objections to nontraditional treatments as long as they take the traditional treatments as well and they are not toxic."

In the end, though, the impact of celebrity can be as ephemeral as fame itself. In the case of Reagan, the incidence of mastectomy versus breast conserving surgery returned to normal within six months.

ADDITIONAL INFORMATION:

Stars struck

Michael J. Fox: Parkinson's
Lou Gehrig: Amyotrophic lateral sclerosis
Rock Hudson: AIDS
Naomi Judd: Hepatitis C
Mary Tyler Moore: Diabetes
Gilda Radner: Ovarian cancer
Suzanne Somers: Breast cancer

Weblink

CDC hepatitis C page (http://www.cdc.gov/ncidod/diseases/hepatitis/c/)

Hepatitis Foundation International (http://www.hepfi.org/)

American Liver Foundation (http://www.liverfoundation.org/)

Infectious Disease Society of America (http://www.idsociety.org/)

Abstract, "Effect of Nancy Reagan's Mastectomy on Choice of Surgery for Breast Cancer by U.S. Women," Journal of the American Medical Association, March 11, 1998 (vol. 279, issue 10) (http://jama.ama-assn.org/issues/v279n10/abs/joc71811.html)