FEATURE STORY — January/February 2010

 

Difference Maker

Janice Phillips has spent her life overcoming the naysayers. Her efforts last April helped pass the Reducing Breast Cancer Disparities Act. Now thousands of minority women will benefit from her determination

By Steve Hendershot

Janice Phillips, manager of nursing research at the University of Chicago Medical Center.

In Chicago, black women are 116 percent more likely than white women to die of breast cancer. One hundred sixteen percent. It’s a statistic so striking that your first instinct is to clarify it, confirm it, make sure that you read it right. It’s true.  Chicago’s African American women are more than twice as likely to die from breast cancer as their white counterparts.

A number like that isn’t just a statistic, it’s a call to action. So in April, Illinois Governor Pat Quinn signed a law aimed at reducing that disparity through measures such as eliminating co-pays for mammograms and requiring insurers to cover additional treatments. The Reducing Breast Cancer Disparities Act passed the state’s General Assembly without a single dissenting vote.

Janice Phillips, PHD ’93 NURS, manager of nursing research at the University of Chicago Medical Center, has studied this disparity for a quarter century and was one of the bill’s most outspoken advocates. Phillips knows the issue from all sides: as a nurse clinician working in the Englewood community, she provided breast and cervical cancer education and screening for underserved women; as a researcher, she studied the disparity in Chicago for her doctoral dissertation and later did work in Maryland and Sao Paolo, Brazil; and as an activist, she sits on the boards of two organizations that spearheaded the legislation: the Metro-politan Chicago Breast Cancer Task Force and the Chicago affiliate of Susan G. Komen for the Cure.

As chair of the Komen for the Cure’s local public-policy initiatives, Phillips helped shape the bill, introduced it at a February 2008 press conference and then shepherded it until its final passage.

“The legislators said, ‘We’ve had people bring us wish-lists, but you’ve brought us evidence; you’ve brought us data,’” Phillips recalls. In addition to that startling 116 percent statistic, she ticks off the factors that deter black women from seeking care: insurance deductibles, the health care maze and a variety of social circumstances. Her testimony was critical in establishing the scope of the problem and the wisdom of the proposed remedies.

“She’s passionate, she’s eloquent, and it’s fantastic to have somebody who can meld the community activist perspective with the medical perspective,” says Sean Tenner, a fellow board member at Komen for the Cure. “There’s no question she’s part of the reason we got such a favorable response.”
           
Now that the bill is law, Phillips is hoping it will affect that 116 percent statistic—in other words, that it will save lives. But this is cancer, a deadly and resilient disease, and some of the legislators had to wonder if the passage of a state law and a toast with pink champagne could really make a difference.

In that respect, Phillips’ greatest testimony wasn’t anything that she spoke aloud in Springfield. Rather, her life and career bear witness to the idea that long odds can be overcome—something that Phillips has demonstrated again and again.

Realizing her potential, despite an abusive foster parent
During the late 1950s, Janice Phillips and her older brother Norman—who suffered from polio—lived with their grandparents at 56th and Indiana on Chicago’s South Side. Their mother had been diagnosed with a mental illness and was sent to the Manteno State Hospital in Kankakee County. Then their grandmother fell ill, and cancer made a visceral first impression on Janice—an acrid smell like raw meat. Soon their grandmother died. It wasn’t until years later, while in nursing school, that Janice pieced together her memories, matched them with her professional training and realized that breast cancer was her grandmother’s killer.

In 1964, when Janice was 10, her grandfather died from a heart attack. Her mother was back living with them then, but her grandfather had warned Janice that her mother still wasn’t well. The family’s debts piled up, and one day Janice came home from school to find they had been evicted. She and Norman bounced around, staying with neighbors; she dropped out of school; her mother’s condition had deteriorated to the point that, in court, she said she didn’t recognize the children, but had noticed them following her.

Soon Janice and Norman were in foster care. The good news was that Janice returned to school and she and Norman had a more stable environment. The bad news: it wasn’t a healthy type of stable. Both children suffered severe physical and mental abuse at the hands of their foster mother, a pattern that continued until Janice finished high school in 1972. Her foster mother opposed college on principle; she was fond of reminding Janice of her mother’s mental illness, and the likelihood of genetic recurrence.

A social worker helped Janice enroll at North Park University in Chicago, set up a bank account, and buy school supplies that she stashed at the home of her foster mother’s niece. Then early one Sunday morning, Janice moved into the dorms at North Park.

“Nobody gets to where they are unless somebody helps them, and [that social worker] made it her mission to make sure kids like me did something meaningful with their lives,” says Janice. “She told me, ‘You really have potential.’ I said, ‘I don’t know what that means, but it sounds good.’”

But no sooner had Janice arrived on campus than she wanted to leave. Her surroundings were radically unfamiliar: her fellow students were mostly white, had better academic backgrounds and were generally intimidating. On second thought, though, she knew that “going back” wasn’t really an option.

“It nearly killed me, but I told myself I was going to do whatever it took to get out of that situation,” she recalls.

Initially, Janice had planned to become a teacher, but heard that there was an oversupply in that field and decided to go into nursing instead.
           
The science classes were a struggle at first, but Janice learned to ask for help, and developed some of the research skills that would later set her apart. Her grades improved and she graduated in 1976.

Facing down rejection at UIC
Janice Phillips spent the next 17 years working at the University of Chicago Medical Center, 15 of those years in the emergency room. After earning a master’s degree in public health in 1985, she began to divide her time between the emergency room at Chicago and UIC’s Mile Square Health Center, where she coordinated outpatient clinical services. In 1988, Phillips joined the UIC School of Public Health as a nurse clinician and worked in the Englewood community, providing breast cancer education and screening.

The testing was free, but initial participation was low. “We were in churches, we were in laundromats, we were doing everything to find these women and offer them testing. They just weren’t coming,” says Phillips. “It was a challenge for me, and I figured I had to do the research.”

That motivation led her to the nursing Ph.D. program at UIC, although her enrollment wasn’t easy. Phillips took the GRE and applied, but was rejected. She re-took the GRE, improved her scores and re-applied, but again was rejected. Phillips responded by writing a letter that highlighted her research interests and contributions to nursing. She was reconsidered and not only admitted, but granted a full scholarship, plus a stipend.

David Ansell, MPH ’91, one of the doctors who worked with Phillips on that screening program, recognized her value and was glad the University did, too.

“Janice is all about fixing things, not just studying them. She’s caring, she’s engaging, she’s willing to fight these uphill battles, and it’s always clear that she’s doing it for her community, not for personal gain. That’s why she’s been so effective,” says Ansell, now chief medical officer at Rush University Medical Center and president of the board of directors, Chicago Metro­politan Breast Cancer Task Force.

The full scholarship was nice, but it didn’t last long. That’s because shortly after Phillips arrived on the UIC campus, her academic advisor pushed her to apply for a different grant based on her proposal to research black women’s reasons for not participating in breast cancer screening. Phillips resisted because she already had a scholarship. But she changed her mind and applied anyway, and soon had a pre-doctoral fellowship from the National Institutes of Health.

“That did make things different for Janice—it launched her,” recalls her adviser, JoEllen Wilbur, MS ’75 NURS, PHD ’84 NURS, now the associate dean for research at Rush University College of Nursing.

Phillips’ research indicated a number of factors had kept black women from testing, ranging from fatalism (“If I have it, I’ll probably die—whether or not I’m diagnosed.”) to ignorance-is-bliss (“If I don’t get tested, they can’t diagnose me.”) to fear of rejection from loved ones. Socioeco­nomic status was a strong predictor of those attitudes, but even middle- and upper-class black women were less likely to be screened than white women.

Seeking ways to eliminate disparity in breast cancer mortality
After completing her UIC degree, Phillips accepted a position on the faculty at the University of Maryland. Her resume filled up quickly: Phillips became the first African American nurse to receive an American Cancer Society professorship; she conducted research in Sao Paolo, funded by UIC; she served as visiting professor at a hospital in Taiwan; and she co-edited a women’s health textbook.

Navigating the politics of academia didn’t come naturally to Phillips, but it wasn’t terribly difficult, either, because she didn’t make enemies. She also found a mentor in Anne Belcher, the long-term care director at Maryland’s nursing school.

Phillips is an engaging public speaker, but she’s also very private, reluctant to reveal too much. (Her college roommate, Kathy Reeves, blames the foster care environment in which Phillips grew up: “How was she supposed to learn how to brag? Nobody cared. She was always just in survival mode.”)

There was one exception at Maryland. It happened when the dean announced she was removing Belcher as director. Phillips alone interrupted the meeting to challenge the decision.

“I’ve never forgotten it,” says Belcher, who now directs the Office for Teaching Excellence at Johns Hopkins University School of Nursing. “You just don’t see faculty take up for one another that way.”

Phillips left Maryland in 1999 for the National Institute of Nursing Research, where she managed more than 100 research and career-development grants devoted to advancing nursing science. In 2005, she returned to the University of Chicago Medical Center to oversee its nursing research program. Her day-to-day responsibilities no longer involve breast cancer or detection and screening issues, so she’s made that an extracurricular activity.

“That’s still my interest, still my passion,” she says. “I find ways to connect it with my research, and when I leave work, I’m usually going to a breast cancer education event, a survivorship event, or a task-force or board meeting.”

Over time, Phillips has become increasingly concerned about the systematic issues affecting the health care of minority women. For example, she says quality care is too expensive and too difficult to access. Thus, she thinks the new law will have an impact.

“For so long, we were talking about women not getting tested. Now the new paradigm … we’re looking at is whether the system is responsive to meeting their needs,” explains Phillips. “We need capacity. We need more places where women can go for screening and detection, and more places where they can go for quality care and treatment if they’re diagnosed with breast cancer.”

Phillips’ shift into public policy comes at a time when she is both convinced that the health care system is in need of repair and concerned about her own legacy.

“I’ve provided the care. I’ve seen what goes on as a clinician. I’ve taught the care; I’ve done the research. Now I need to make sure I’m involved in effectively making change,” she says. “That’s what will cap it off.”

Her public profile is growing along with her influence on policy. She is working with the Komen Foundation and Metro­politan Chicago Breast Cancer Task Force to ensure that provisions of the disparities bill are properly implemented.

But even as her methods are changing, Phillips’ motivation is the same as it was when she ran the screening clinic during the 1980s: “If we can initiate treatment in a timely manner, we can save lives,” she says. Fixing the health care system is almost as tall an order as curing cancer. But Phillips knows from experience that even a flawed system can be effective. So she’s focused on limiting those flaws, making incremental changes such as those included in the disparities bill.

If the law succeeds in making even a small dent in that 116 percent statistic, it will be a great success. After all, even an improvement of one percentile will represent women whose futures are restored, improved and open to opportunity.

And as Janice Phillips’ story bears witness, anything is possible with opportunity—even in the face of daunting odds.