FROM ZERO TO HUNDREDS OF MILLIONS AS BREAST CANCER FUND RAISING BOOMS, OTHERS LOOK TO REPEAT THAT SUCCESS.

Byline: Mariko Thompson Staff Writer

Women advocating for breast cancer research remember the stigma of the early days, when people wouldn't say the word ``breast,'' much less ``breast cancer.'' Today, people speak freely about both body part and disease, though the words are hardly necessary. All they have to do is show a loop of pink ribbon.

That the pink ribbon has become the ubiquitous symbol of breast cancer awareness speaks to the transformation of a grass-roots movement into a juggernaut of publicity and fund raising. Advocates banded together and demanded not only federal research dollars but a say in how the money was spent. They became effective lobbyists, touting an agenda that crossed political parties, race and socioeconomic barriers, said Dr. Dennis Slamon, director of the Revlon/UCLA Women's Cancer Research Program at the UCLA Jonsson Comprehensive Cancer Center.

``They said, 'More than 52 percent of voters are women, therefore we want something done about this.' The second the voters spoke with a fairly large voice, they got response that was immediate. It was really magic. That's basically how the system is supposed to work,'' Slamon said.

An estimated 40,000 American women die of breast cancer, and more than 211,000 are diagnosed with the disease each year. Since the National Breast Cancer Coalition was formed in 1991, federal funding for breast cancer research has increased from $100 million to $800 million today. Advocates also altered the landscape for cancer research, which relied on federal grants, by raising millions in private and corporate donations.

Open a women's magazine in the month of October, the official Breast Cancer Awareness Month, and readers are hit with an onslaught of pink- ribboned advertisements. Throngs of people turn out for fund-raising events nationwide. Los Angeles alone will host at least four major ones in 2003 - the Revlon Run-Walk for Women in May, the City of Hope Walk of Hope and Avon Walk for Breast Cancer in September, and the Susan G. Komen Breast Cancer Foundation Race for the Cure on Nov. 2.

So visible is their cause that it's hard to imagine the obscure beginnings, when women fed up with the system launched the daunting task of raising money and political clout.

Once an activist ...

For Fran Visco, lobbying for federal breast cancer research funds was an extension of her activism in the antiwar and women's rights movements. Visco was a partner in a Philadelphia law firm in 1987 when she was diagnosed with breast cancer. Later, she worked as a volunteer at community breast cancer organizations. Noting the success of AIDS activists in increasing federal funding for research, Visco and members of 27 other groups decided to form the National Breast Cancer Coalition in 1991. Today the coalition represents more than 600 organizations.

``At heart, I'm a political activist,'' said Visco, the coalition's president. ``We're this stealth breast cancer organization in the sense that few people know who we are. We don't do pink ribbons, races and runs. We don't do the things that get our name in the public.''

Over in Dallas, Nancy Brinker created the Susan G. Komen Breast Cancer Foundation in 1982 in memory of her sister, who died of the disease at age 36. Brinker brainstormed with some friends, collected a couple hundred dollars and organized the foundation's first event, a polo match. The following year, the group held the first Komen Race for the Cure, which drew 800 participants in Dallas. The fund-raiser remained a regional affair until 1990, when Marilyn Quayle got involved.

The wife of former Vice President Dan Quayle had lost her mother to breast cancer and wanted to have a Komen Race for the Cure in Washington, D.C. The exposure boosted the event to a national level. Today, the event is held in 112 U.S. cities and boasts 1.5 million participants. The foundation raised a net $118 million for research, treatment and screening services and educational programs in the 2002 fiscal year.

``We know that to be able to continue our work, we have to be in the mainstream,'' said Susan Braun, the foundation's president and CEO. ``Being able to work with events where people can see the hope - that keeps important messages in front.''

In Los Angeles, the partnership between Revlon and UCLA was more circuitous. Twenty years ago, Slamon began treating Brandon Tartikoff, the late NBC executive, for Hodgkin's disease with cutting-edge drugs. As Tartikoff's wife, Lilly, learned more about how new cancer treatments were developed, she became determined to raise money for this doctor who had done so much to help her husband.

``I had never raised a dime,'' Lilly said. ``I had this feeling between (Slamon's) obsession, passion and brilliance, he was going to come up with something.''

By the late 1980s, Slamon was in dogged pursuit of what would become the breast cancer drug Herceptin. Lilly, using her connections, approached Revlon CEO Ronald Perelman about sponsoring Slamon's work.

Backing scientific research couldn't guarantee the same visibility as, say, giving money to a new building that would then be named for the donor. But Perelman agreed. Fourteen years later, events such as the Revlon Run- Walk and the Fire and Ice Ball have raised more than $25 million for the Revlon/UCLA Women's Cancer Research Program. Lilly Tartikoff's faith in Slamon paid off. In 1998, Herceptin won approval from the Food and Drug Administration.

Corporations and a cause

These days, breast cancer organizations have little trouble persuading corporations to get behind their cause. Companies aligning themselves with breast cancer research run the gamut, from cosmetics, jewelry and snack foods to small kitchen appliances and automobiles.

``This is a form of what we call affinity marketing,'' said David Stewart, deputy dean and professor of marketing in the USC Marshall School of Business. ``To the extent that you can wrap your product around a cause, you'll be more appealing to that segment of the population. From the charity's perspective, they can generate funds that they wouldn't normally generate, reaching more people than a typical solicitation would.''

The high profile of the breast cancer advocacy movement has been a source of inspiration - and at times frustration - for other health causes. Westlake Village sports chiropractor Terry Weyman modeled the Prostate Cancer Climb on the Expedition Inspiration, an outfit that scales mountains to raise money for breast cancer. For the first Prostate Cancer Climb, participants climbed Mount Kilimanjaro in 2001. Publicity proved to be a challenge.

``Breast cancer has a buzz,'' Weyman said. ``You start talking about prostate cancer and it gets lost. It gets lumped in with all the other cancers.''

Weyman has learned to highlight the genetic links, noting that a family history of breast cancer also increases the risk of prostate cancer.

The HIV-AIDS movement has encountered the opposite challenge - of sustaining urgency in the public eye. Despite the fact that AIDS remains a global epidemic, the cause in the U.S. has lost the immediacy that it had in the '80s and '90s. Chris Fritzen, senior development officer for AIDS Project Los Angeles, cites a number of factors, including the economic decline, the stigma of AIDS as a disease that primarily affects gay men, and the changing demographics. Today, the majority of those with HIV or AIDS are people of color living below the federal poverty level, Fritzen said.

At the same time, the nature of corporate sponsorship for health causes has evolved. Ten years ago, corporations wrote checks that went directly to the not-for-profit organization. Today, the emphasis has shifted from philanthropy to marketing value, Fritzen said.

``I'd say with corporate donors now it's much more about, 'What can I do for you and what can you do for me?' '' Fritzen said. ``The actual cause has become the secondary reason to get into the philanthropy game. Honestly, it's made us change. We look at what types of things we offer, then we go out and look for corporations that might fit.''

Breast cancer groups say they, too, are mindful that the public could tire of their cause. One way that the Komen Foundation tries to keep interest from flagging is by supporting local programs. Donors can see the direct beneficiaries of their dollars.

``We diminish the suffering today and invest heavily, hard and carefully in the answers for tomorrow,'' Braun said.

Mariko Thompson, [phone]

mariko.thompson(at)dailynews.com

Advocates look beyond early detection

For all of the progress and accomplishments over the last two decades, Fran Visco of the National Breast Cancer Coalition is worried. She worries that too few supporters are moved to activism. She worries that the increasingly high profile of the awareness effort has oversimplified a complex disease.

``It is much more out in the open,'' said Visco of the disease that kills an estimated 40,000 women each year. ``Everyone is aware of breast cancer. To some extent, we're victims of that success, because the more awareness you raise, the more you make it palatable. Breast cancer is not a palatable disease.''

In a 2002 poll, the coalition, which represents more than 600 groups, found 32 percent of respondents had worn a pink ribbon as a symbol of support. Only 6 percent had called an elected official to push for federally funded research. Seventy-nine percent agreed that progress has been made in the fight against breast cancer.

There have been bright spots. Tumors found at earlier stages and better treatment methods are credited with lowering the mortality rate. Between 1990 and 2000, the mortality rate decreased 2.3 percent per year, according to the American Cancer Society.

Advocacy groups have been instrumental in pushing the message of early detection. While early detection is an important tool, the subtleties of science are sometimes lost in the message.

A year ago, a large-scale study by the Fred Hutchinson Cancer Research Center in Seattle weakened the case for monthly breast self-examination, finding the practice does not reduce mortality. Soon after, the American Cancer Society made the monthly self-exam optional in its guidelines. The role of annual breast exams performed by a doctor also is being reconsidered, according to Dr. Christy Russell, a spokesperson for the American Cancer Society and co-director of the Lee Breast Center at the USC-Norris Comprehensive Cancer Center.

Mammography, considered the gold standard of early detection, is not foolproof either. The scientific community has engaged in considerable debate over its effectiveness, particularly for women between the ages of 40 and 50. In their guidelines, the National Cancer Institute and the American Cancer Society decided to go with the screenings starting at age 40.

Susan Braun, president and CEO of the Susan G. Komen Foundation, said the brochures and informational materials that are distributed through corporate partnerships and events underscore the sober reality of the disease. Her organization works to balance the grim statistics and the hope that has come with progress, she said.

``People don't like to be reminded of things that are difficult,'' Braun said. ``This is a major killer of women in their middle years.''

Far more work needs to be done, advocates say. Besides encouraging women to get mammograms, those who are diagnosed with breast cancer must have access to treatment, Visco said. The coalition also is pushing for more funding for the National Institute of Environmental Health Sciences to study links between the environment and breast cancer.

``It's difficult, complex work that needs to be done to end the disease for all women,'' Visco said. ``We need to think beyond symbols and awareness to action.''

- M.T.

Breast cancer facts

More than 211,000 American women will be diagnosed with breast cancer in 2003. An estimated 39,800 will die this year.

--Between 1990 and 2000, the mortality rate decreased by 2.3 percent a year.

--The survival rate is 87 percent five years after diagnosis.

--Other than being female, age is the most important risk factor. For a 40-year-old woman, the odds are 1 in 69 of developing breast cancer over the next decade. For a 70-year-old woman, the odds increase to 1 in 23.

--For women age 40 and older, the American Cancer Society recommends an annual mammogram, an annual breast exam performed by a doctor and optional monthly self-exams.

Source: American Cancer Society

CAPTION(S):

8 photos, 2 boxes

Photo:

(1 -- cover -- color) Started as a grass-roots efforts 20 years ago, fund raising has gone high profile in the campaign to increase breast cancer awareness

(2) 1. Gold-plated ``Time for the Cure'' watch from Relic.

(3) 2. Through Nov. 30, for every pink ribbon consumers clip and mail, Dreyer's will donate $1 to City of Hope for breast cancer research.

(4) 3.Proceeds from Avon's $5 cosmetics case support the Avon Breast Cancer Crusade. (800) FOR-AVON or www.avoncrusade.com.

(5) 4. Carolee's ``Charms of Life'' bracelet in sterling silver with cultured pearls.

(6) 5. Brighton's ``Think Pink'' charm bracelet, $37, is available through Oct. 31, with $5 going to the Susan G. Komen Breast Cancer Foundation. [phone] or www.komen.org.

(7) 6. Pink ribbon pins, $3, help support the Komen Foundation. [phone] or www.apluspins.com.

(8) 7. Funds from Avon's $7.50 umbrella go to the Avon Breast Cancer Crusade. (800) FOR-AVON or www.avoncrusade.com.

Box:

(1) Advocates look beyond early detection (see text)

(2) Breast cancer facts (see text)