At age 35, Carey Weiner was about to get tested to see whether she had a form of a gene that would put her at greater risk for breast cancer. But before Weiner, of Wellington, Florida, could get the test, she found out the risk was a reality: she had ductal carcinoma in situ—cancer contained within the ducts of the breast. Weiner, who is of Ashkenazi Jewish descent, had known her risk could be high. Her maternal grandmother died from breast cancer, and her mother and aunt tested positive for the genetic variant&mdash;a mutation in a gene called BRCA1. But Weiner’s gynecologist told her, in error, that she was too young to worry about it.

In September 2007, Weiner underwent a bilateral mastectomy and learned that she, too, had the BRCA1 mutation. In 2008, she had a total hysterectomy, including removal of her ovaries, to protect herself from another threat posed by BRCA1: ovarian cancer.

Genetic mutations linked to specific cancers can affect certain racial or ethnic groups more than others. For instance, the same BRCA1 mutation, which is more common in Ashkenazi Jews than in the population as a whole, also appears to be somewhat more common in Latinas. Meanwhile, mutations in another breast cancer-related gene, BRCA2, are slightly more frequent among African-Americans, putting them at higher risk of very aggressive breast and ovarian cancers compared with white women, according to the National Cancer Institute. (Women of any racial or ethnic group with a family history of breast cancer, or with relatives known to have mutations in the BRCA1 or BRCA2 genes, should discuss the possibility of testing with a genetic counselor.)

For African-American men, several genetic factors tied to prostate cancer have been reported, the NCI says. Specifically,&shy; recent research has found different combinations of genetic variants associated with higher or lower prostate cancer risk—and the bulk of those linked to higher risk were found most often in African-Americans.

Another example involves Asians. Recent evidence suggests a particular genetic variant, which affects alcohol metabolism, increases liver cancer risk, and that this variant is most common in people living in southeast China.

Other discoveries relate to how the body metabolizes drugs or other substances that can affect the vitality of a tumor.

“Genetic factors can impact how a tumor progresses and how it will react to various treatments,” says Sanya Springfield, PhD, director of the NCI’s Center to Reduce Cancer Health Disparities. “Some ethnic groups may experience greater toxicity when treated with the same dose and schedule of drugs. In other words, based on your genetic differences, a person may react differently to different drugs. This is because of gene variations in drug-metabolizing enzymes.” 

For instance, a variant of a gene called CYP2D6, found more often in Asians, may result in poor metabolism of the breast cancer treatment tamoxifen. Because the drug is not converted to its more active form, the medicine could be rendered less effective and other treatments might be better choices.

Research is also beginning to sort out how race or ethnicity is linked to biological differences in tumors themselves.

One example involves a gene mutation that is not inherited, but develops in the cells of various cancers, including lung cancer. The gene, known as epidermal growth factor receptor, or EGFR, can be exploited by targeted treatments. Some recent studies analyzing EGFR mutations suggest they occur at a much higher level in Asian patients than in non-Asian patients. In addition, evidence suggests that Asians’ response to lung cancer treatments targeting EGFR is better than non-Asians’ response.

“Rather than attribute the disparity in cancer survival only to the real problems of poverty or poor access to care, we think these data tell us there’s something additional going on in the sex-specific cancers.”

Such evidence includes a 2005 study of the EGFR-targeting treatment Tarceva (erlotinib) in non-small cell lung cancer patients who had received prior treatment. That study, published in The New England Journal of Medicine, found that of the 427 patients on Tarceva, 38 of them—or 8.9 percent&mdash;had their tumors shrink by at least one-third. But in Asians, that percentage more than doubles. Of the 53 Asian patients receiving Tarceva, 10 individuals&mdash;or 18.9 percent&mdash;experienced tumor shrinkage of at least one-third, the study found.

Other recent research has shed light on whether any inherent biological differences in cancers and their environment contribute to shorter survival time among African-Americans compared with Caucasians. That study, led by Kathy Albain, MD, breast and lung cancer specialist at Loyola University Chicago’s Cardinal Bernardin Cancer Center in Maywood, Illinois, examined survival for a variety of cancers in African-Americans and Caucasians when various factors were made equal—that is, people at the same stages of treatment who had received identical treatment from the same set of doctors.

The study, examining records from almost 20,000 patients, also adjusted for factors known to influence the outcomes of a particular cancer—for instance, number of lymph nodes involved in early-stage premenopausal and postmenopausal breast cancer. Other cancer types studied were early-stage colon cancer; acute myelogenous leukemia; limited-stage small cell lung cancer; advanced non-Hodgkin lymphoma; advanced prostate, non-small cell lung, and ovarian cancers; and multiple myeloma. The researchers also adjusted for socioeconomic status, likewise an important influence on outcome, Albain says.

For the majority of cancers studied, there was no significant difference in survival time. In other words, Albain says, all things being equal, if African-Americans go to good doctors and get good treatment, “they will do just as well in most common cancers.”

The exceptions were the sex-specific cancers—breast, ovarian, and prostate. Looking more closely at these cancers, researchers accounted for other potentially relevant factors, including obesity. But the survival difference persisted.

For breast cancer, the researchers separated out patients with estrogen receptor-negative cancers, which disproportionately affect African-Americans, and focused on just estrogen receptor-positive cancers. “There still was a disparity,” Albain says. That disparity in breast cancer held even when researchers adjusted for white blood cell counts, a reflection of the ability to receive full doses of treatment, and adherence to medical &shy;appointments.

“Rather than attribute the disparity in cancer survival only to the real problems of poverty or poor access to care, we think these data tell us there’s something additional going on in the sex-specific cancers,” Albain says. “We’re picturing a possible interaction between what you as an individual inherit that activates and metabolizes your hormones and chemotherapy drugs, and also the tumor’s own biology.”

None of this diminishes the role played by social and cultural factors, such as poverty and lack of access to health care, problems that can affect minority groups disproportionately. For instance, poor access to care has been found to lead to diagnostic and treatment delays that can worsen a cancer patient’s prognosis.

From a societal viewpoint, simply associating certain cancer outcomes with race or ethnicity can divert attention from such underlying causes of cancer health disparities, says Otis Brawley, MD, chief medical officer of the American Cancer Society. “It may very well be race causing socioeconomics to be such that … black women are overwhelmingly poorer compared to white women, and that very well may be much of the answer” behind differences in cancer outcomes, he says.

While Albain’s study shows that equal treatment leads to equal outcomes for most of the cancers, says Brawley, “we have data that show there is not equal treatment in the United States.”

From a biological perspective, Albain notes that inherited patterns of drug and hormone activation and metabolism, while often highly connected with specific racial or ethnic groups, don’t track with race or ethnicity per se.  

“Race is a proxy for inherited traits,” she says. “There are going to be Caucasians that have that same profile, whatever it ends up to be.” Once such profiles are understood, she says, doctors will be able to provide highly personalized treatment, based on the specific gene patterns patients inherit, rather than broader racial or ethnic classifications. 

“Race is a proxy for inherited traits. There are going to be Caucasians that have that same profile, whatever it ends up to be.”

Weiner, now 37, says it’s troubling to grasp that a part of her identity—her Ashkenazi heritage&mdash;is linked to a higher risk of cancer. 

“We kind of have been gypped,” she says. “There are so many health problems with Jewish people ... that they have to look for in genetics. And now here’s another thing.

“But at least they now know there is something out there to look for; there is that BRCA test,” Weiner says.

Knowledge about links between ancestry and cancer risk is growing—and with it, the possibilities of tailoring screening and prevention efforts to specific populations, and targeting treatments to particular genetic characteristics of a tumor or a patient.

Articles

Features

What role does race and ethnicity play in cancer?

Race, Genetics & Cancer

When Marjorie Kagawa Singer, PhD, RN, began working as an oncology nurse in Los Angeles in the late 1960s, she discovered that her education about psychosocial support had little relevance for the minority patients she worked with. Instead, she relied on insights from growing up in Lodi, California, and the segregated neighborhoods of Berkeley as a third-generation Japanese-American. The disconnect between what minority cancer patients needed and what was available led Kagawa Singer to study cultural differences in cancer care for her PhD dissertation. Today, she serves as principal investigator at the National Cancer Institute-funded UCLA Minority Training Program for Cancer Control Research. Her research focuses on cultural differences in cancer, especially for Asian-Americans, a population for whom research is lacking—and in health care, little changes without the research to back it up.  

"Part of the problem in talking about health disparities is that if you don’t do research with the communities, you are going to replicate only what has been done, and with increasing numbers of these populations, disparities will only persist,” Kagawa Singer says.

The current Eurocentric paradigm for cancer care presents a number of hurdles for minority survivors, she says, beginning with researchers not knowing how many of the 12 million survivors in the country represent minorities because government data collected from patient charts are notoriously &shy;inaccurate. 

For example, she says, in the Asian-American and Pacific Islander communities where she works, there are more than 37 nationalities and over 100 languages. “Twenty-two states don’t even count Asians as a category, let alone Pacific Islanders as a separate group; they are in the ‘other’ category,” Kagawa Singer says. The error rate for “counting” cancer incidence is also high for groups of color, she says, explaining that in California, there was an 80 percent error rate in identification of Native Americans because most have Hispanic surnames. 

She hopes this will improve now that the Institute of Medicine released recommendations in August on how to make racial and ethnic designations. The report, “Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement,” says the U.S. Department of Health and Human Services should provide health care workers with nationally standardized lists of narrowly defined categories of ethnicity. Plus, the IOM recommends that individuals should be given the option to self-identify their ethnicity if it is not listed. Culture makes a difference, says Kagawa Singer, since the process of providing support is based on Eurocentric definitions of identity, concept of self, autonomy, and privacy that may not apply to the majority of minority communities. 

It’s not a matter of right or wrong, says Kagawa Singer. It’s just different.

As happens often in cancer, individuals with insight and need have led the way in developing support where none exists. When Karen Eubanks Jackson was diagnosed with breast cancer at age 50 in 1993, she immediately began looking for support that would speak to her African-American culture. When she didn’t find a national network, she started one: Sisters Network, Inc (

“I was looking for a connection, a ‘sisterhood,’” Jackson says. “When it came time for me to take my journey with breast cancer, I needed more than just someone to talk to—I needed someone who could relate to me specifically.” 

What began as Jackson gathering “sisters” to help her understand her journey more than 15 years ago has grown into a national network of 43 affiliate chapters in 22 states with more than 3,000 members and untold numbers of &shy;associate members, such as family and friends and colleagues. Jackson, as founder and CEO, says the network provides not only patient support, education, financial assistance, and clinical trial recruitment, but also support for the family, including men and older boys, who need to know what is happening so they can end the survivor’s shame of talking about breast cancer, Jackson says.  

This reflects the organization’s motto, “Stop the Silence,” which Jackson says speaks to the reluctance in the African-American community to speak about breast cancer and other health issues due to a cultural sense of privacy and shame.

“The first couple of years, my own family couldn’t understand why I needed to speak out and create a national organization. Why didn’t I just forget about breast cancer and move on with my life?”

Despite major success in the African-American community, Jackson says there is still work to be done, which is why Sisters Network affiliates coordinate with local organizations to go door to door in African-American communities to educate women about breast cancer and provide free mammograms &shy;?through the network’s signature outreach program called the Gift for Life Block Walk. In addition, the network has implemented a national initiative to educate African-American women through churches about the need for mammography and breast self-exam and to inspire survivors to participate in the sisterhood movement. Plus, Jackson says a key piece of the network has been gaining the trust of the African-American community about enrolling in clinical trials.

Kagawa Singer says research will help provide the descriptive work needed to identify the differences in what will be relevant and meaningful to different cultural groups, such as understanding the role of family and communication. She offers the explanation of how groups communicate, saying that, perhaps with the exception of the African-American community, research shows that non-European minorities tend to be less verbal.

Communication with Native Americans, Asians, Latinos, and Pacific Islanders is more indirect so as not to make the other person uncomfortable, says Kagawa Singer. “This means communication takes a lot longer because you have to be careful. When they know you are able to do that, then there is a sense of safety, and trust is more likely to be built.”

This is one reason why members of these populations may show up for support groups once or twice but not return if they are pushed to &shy;communicate their inner feelings directly.

“When it came time for me to take my journey with breast cancer, I needed more than just someone to talk to—I needed someone who could relate to me specifically.“

Education and trust are also major hurdles for Elliott Goytia, MD, in his job as a physician at Queens Cancer Center in Jamaica, New York. Goytia directs the hospital’s primary care clinic for survivors, which serves the minority population in partnership with Memorial Sloan-Kettering Cancer Center in New York City.

The clinic was initially designed to work with minorities beginning two years after treatment, Goytia says, but patients needed more, including primary care, so they now have three patient populations: one for preventive care, one for active treatment, and one for survivorship. “Queens is the most diverse borough in the United States,” Goytia says. “We have patients who come speaking 135 different languages. It’s really a micro-world.”

For the more than 1,200 patients with an &shy;average eighth-grade education, Goytia says, even educating them about their cancer can be time-consuming and take multiple visits that may involve four or five family members.

“This means communication takes a lot longer because you have to be careful. When they know you are able to do that, then there is a sense of safety, and trust is more likely to be built.“

“I am trying to create patient treatment summaries to help them understand the risk going forward and to understand what they should be looking for if their disease progresses,” he says. That can mean accepting spiritual practices and that patients may want to visit their community healer before starting treatment. 

Kagawa Singer says finding successful approaches means looking at the dynamics of a culture that may be very different from your own, such as one of her outreach programs where the goal was to increase mammography among Cambodian, Laotian, Vietnamese, Tongan, Samoan, and Chamorro women. The researchers looked at the dynamics in the group and found that these were male-dominated relationships. So, they decided to focus on helping the male partners of the women understand the purpose of mammography. 

“We educated the men in these groups, and they said, ‘Oh, that’s what that’s for. Then my wife will get one tomorrow,’” Kagawa Singer says. “Some of the women said they didn’t want to go, and the husbands took them. In these communities, we recognize that cancer is a family affair.”

Cancer care for survivors is beginning to incorporate cultural differences.

The Many Shades of Survivorship

Noelle Karmo is 6. Her mother is black; her father is white. When she wants a doll, she wants a doll that looks like her, with her brown skin and hair. The newly diagnosed often want to hear from “somebody that looks like them, talks like them, that they can identify with,” says Noelle’s mother, Maimah, a native of Liberia who is a breast cancer survivor and activist. “People need to see a face that looks like theirs.”

That kind of bond is especially critical in minority &shy;communities. Connecting with a survivor of the same ethnic and cultural back&shy;ground creates camaraderie and hope. Yet role models can be hard to find. In some cultures, merely uttering the word “cancer” is as if to be cursed. Fortunately, a small but growing group of activists are showing their faces and telling their stories.

[Talking Man to Man in the Black Community]

Jim Williams walked into a prostate cancer support group in 1991. He was the only black man in the room.

His diagnosis came after routine blood work at a physical when he was 55. Surgery and hormonal therapy rid him of the cancer. “I was fortunate,” recalls Williams, now 72, a retired Army colonel and a human relations consultant in Camp Hill, Pennsylvania. 

Recognizing that not everyone is so lucky, Williams now devotes five to six hours a day to promote prostate cancer awareness. He puts in time at the national and local level, from National &shy;Cancer Institute committees to Pennsylvania support groups he has started. 

One thing he’s learned: “A survivor has more credibility than a professional.” Plus, he points out, local folks are the ones who get all the work done. In the African-American community, he tries to find candidates in churches and fraternal groups. 

The idea that people listen to “somebody that looks like you does have merit,” Williams says. “But you can screw that up as soon as you open your mouth if you don’t have the right information. You’re just a face with no substance.”

Too often, men, especially black men, are dying not because they don’t have the science, but because they’re not utilizing the science that’s available, says Williams. But that just makes him more determined to speak out. Along with his big-picture efforts, Williams will continue with the one thing he knows makes a difference: “eyeball-to-eyeball” conversation.

[A Latino Who’s Not Shy About Seeing the Doctor]

“I kind of needed a bunch of drinks that day,” remembers Guillermo Barthelmes. He’s talking about February 3, 2006. His wife-to-be had been on his back about getting a physical. He did, on February 1. Two days later, his doctor called. Barthelmes had leukemia. 

The Florida banker had chemotherapy and a stem cell transplant. Cancer didn’t run his life, though. He married Viviana in 2008; they welcomed a daughter, Michaela, this January. 

Today, “I’m doing well,” says Barthelmes, 31, who emigrated from Peru at 19. But he is not &shy;recuperating in quietude. “God gave me a second chance,” he says. “I will gain nothing if I chill out and watch a bunch of TV.”

Out he goes, speaking to everyone he meets—“even people at the Banana Republic counter, &shy;seriously!” He wants to encourage folks to become bone marrow donors. When he targets the Latino community, he corrects misconceptions that a donor will become sterile and fights the idea that going to the doctor is a sign of weakness.

In what little spare time he has, he and his wife have translated English-language cancer booklets to Spanish. He also speaks to newly diagnosed leukemia patients as a volunteer in The Leukemia & Lymphoma Society’s First Connection peer-to-peer program (

So, it sounds like cancer activism 24 hours a day, seven days a week. Does that ever get him down? 

Not at all, says Barthelmes: “The only thing I need to have a beautiful day is look at my wife and my daughter and get a smile from them.”

[Speaking the Word Native Americans Won’t Say]

HollyAnna Pinkham was diagnosed with cancer just before her 23rd birthday in 1993. She told no one—not parents, not husband, not children, not coworkers.

Her privacy wasn’t by choice. Pinkham belongs to the Yakama nation, whose language has no word for “cancer.” In Native American culture, she explains, cancer is not to be discussed: “Even to say it was as if you wanted it.”

She’s since had three recurrences. The first time the cancer came back, in 2003, Pinkham confided in her sister, who told her: “You must not have done something the first time that you need to do this time, a path you didn’t take.”

Pinkham chose a new path, bringing tribal remedies into the mix—with her doctor’s approval. And she became an advocate for Native American cancer care. 

Before going public, she asked tribal elders for their blessing. “I explained I wanted to travel through Indian country, helping other native people face this challenge.” She chose her words carefully. “Instead of saying ‘I have cancer,’ I said, ‘I am facing this challenge called cancer.’ That was a way to keep it outside of my life without inviting it in.”

Her outreach efforts are also carefully worded. For example, Pinkham prefers not to reveal what kind of cancer she had. She’s found that Native Americans are more willing to ask her questions if she talks about cancer in a general way. “If I get specific, it causes an added barrier,” she says. Someone might think, “Well, it’s not the same kind of cancer I have.”

Pinkham’s wish list includes better medical care on reservations, where doctors may have limited hours and cancer specialists are many miles away. She also wants to help Native Americans bridge the gap between modern medicine and old-school native philosophy.

At powwows, she wears a “jingle dress” with the initials LAF. People want to know what LAF means, and the door is open to a conversation about the Lance Armstrong Foundation (

In a cosmic coincidence, the Nez Pearce language that Pinkham speaks calls cancer survivors wasi’yiyu quepsqueps—those who live strong.

“That’s Armstrong’s motto, I guess,” she says. Hers, too.

When Susan Shinagawa was 34, she had a painful, palpable lump in her breast. The doctor didn’t want to do a biopsy. She was too young to be a candidate for breast cancer, he said. She had no family history. Besides, as he put it, “Asian women don’t get breast cancer.”

Shinagawa persisted. The lump was in fact cancerous. She had a mastectomy in 1991 and eight rounds of chemotherapy.

Since then, she’s had two more encounters with cancer. In 1997, Shinagawa was treated for recurrent cancer in her cerebral spinal fluid. Four years later, another cancer occurred in her left breast. 

Today, the Japanese-American says, “I have no boobs and hopefully no cancer.” But she hasn’t put cancer in her past. She has become a leading cancer activist, focusing on Asian and Pacific Islander populations. 

Among Asians and Pacific Islanders, she notes, there is a reluctance to talk about cancer. “There’s a lot of superstition. People think just by being near someone with cancer, they can catch the disease.” 

She’s heard too many stories of Asian women with cancer whose husbands divorced them, who were kicked out of their apartment, or fired from their jobs because of “bad karma.” It’s not that the Asian community is uncaring, she notes. It’s just that cancer causes unreasonable fears.

It wasn’t hard for Shinagawa to defy cultural taboos and speak out. A leader in the Intercultural Cancer Council (

; 713-798-4614) and &shy;co-founder of the Asian & Pacific Islander National Cancer Survivors Network (

; 415-954-9988), she shares her story at national events. Recently, she has been involved with the Asian and Pacific Islander Cancer Education and Material Web Tool, jointly sponsored by the American Cancer Society and the Asian American Network for Cancer Awareness, Research and Training. The online tool (

) provides physicians and others with easy access to reliable cancer information in many Asian and Pacific Islander languages.

At public forums, she inevitably shares the remark the doctor made when she came to discuss the lump in her breast all those years ago. And inevitably, an Asian woman will say: “I just got diagnosed and my doctor told me the same thing.”

“The farther away it gets from 1991 and I still hear that, it makes me more and more angry,” she says. And when Shinagawa gets angry, she gets results. Even her mother, who wasn’t completely comfortable with her daughter’s outspoken activism at first, now sees the benefit. “[My mother] has finally come to terms with the fact that my big mouth is doing some good.”

Hawaiians are great sea voyagers, says Victor Kaiwi Pang, who hails from Maui and now lives in Huntington Beach, California. “They wouldn’t be able to do that if they didn’t have people who could paddle,” Pang says. “They would end up someplace that had a doldrums”—where the wind wasn’t blowing. The moral of the story, he says simply, is “you have to paddle.”

Pacific Islander men aren’t inclined to speak out about cancer, says Pang, 72, who was diagnosed with non-Hodgkin lymphoma in 1989. 

“They feel, ‘Why should anyone know about my personal problems?’ They just see it as a deck of cards dealt in life.”

As a founding member of the Pacific Islander Health Partnership (&shy;

) he wants his community to know that cancer can be treated. He refers people to low-cost or no-cost medical care if they are uninsured. At the Pacific Islander Festival that he runs, 10,000 people might show up for pork steamed in taro leaves, music, and mammogram vans.

A more intimate gathering is the cancer support group Pang leads. From 18 to 30 Pacific Islander men might show up for a speaker and dinner. True to their untalkative nature, they don’t say a lot about their brush with the disease. “To them it’s, ‘wow, you’ve survived and I’ve survived,’ and that’s the only message.”

“A lot of African women don’t want to tell others when they have breast cancer,” says Maimah Karmo, a Liberian-born cancer survivor and activist. “They whisper about it, almost as if there is a feeling of shame.”

Karmo was diagnosed in 2006. She was 32 and living in Virginia, a single mom to a 3-year-old daughter. She was engaged to be married. Her fiancé left; he couldn’t deal with the disease. 

She had a lumpectomy, chemotherapy, and a lot of unsettling emotions. She was angry and fearful her daughter might grow up without a mother. 

For months she prayed for guidance. One night, she made a divine pact: “If I survive, I’ll do &shy;everything in my power to change the landscape for young women with breast cancer.”

In the same year she was diagnosed, she founded the Tigerlily Foundation (

; 888-580-6253) to educate and support young women with breast cancer. To her, the tiger lily is the perfect symbol for a survivor. The flower can lose its petals, go dormant, then bloom again.

Grateful for help from family and friends during her treatment, Karmo has sought donations and local partners to provide meals, house cleaning, and financial aid for breast cancer patients. Karmo talks in a strong voice at churches and colleges and at women’s groups, and has even been on Oprah. 

Along the way, as an African woman who came to the United States at age 16, she’s met many single moms like herself who pride themselves on being strong, black women. “They focus on their kids; they won’t allow themselves to even think about being vulnerable and sick,” she says. “I tell them you are a woman before you are strong and black”—and encourages them to make their own breast health a priority. 

One topic that comes up is hair. “For a black woman, it’s a big thing,” says Karmo, who wore a wig to hide her chemo baldness. But after thinking, “I’m in menopause; I’m sweating,” she took it off. “Taking the wig off is my way of saying to hell with it! This is my experience. I’m not going to hide it.”

Besides, hair grows back—although post-chemo hair can be a challenge. To provide help, she plans to hold a yearly “Day of Beauty” for breast cancer survivors in Washington, D.C.

Not only is she a tiger lily, she is a tiger in the war against breast cancer.

Too often, men, especially black men, are dying not because they don't have the science, but because they're not utilizing the science that's available. 

Shinagawa hasn't put cancer in her past. She has become a leading cancer activist, focusing on Asian and Pacific Islander populations. 

As an African woman who came to the United States at age 16, Karmo has met many single black moms like herself who pride themselves on being strong, black women. "I tell them you are a woman before you are strong and black"- and encourages them to make their own breast health a priority.  

Six cancer survivors share their stories and their missions.

Cancer Heroes

In its first consensus report on cancer in minorities and the underserved, the National Medical Association, the country’s largest association of African-American physicians, made a number of recommendations, including the appointment of a “cancer czar.” 

The report was delivered during a combined session of the American Cancer Society’s 2009 Disparities Conference, Health Equity: Through the Cancer Lens, and the NMA’s annual meeting in July in Las Vegas. 

Linda Blount, national vice president of health disparities for the ACS, which collaborated with the NMA on the report, says the czar would be someone above the director of the National Cancer Institute and would report directly to the president. The czar would coordinate national efforts to eliminate cancer disparities, which the report panel indicated would include socioeconomic factors, health professional shortages, and other social determinants of health. 

Compiled by a panel of experts from across the country, the report concluded that “African Americans, compared to Caucasians, have higher rates of many cancers,” and that despite “appreciable advances in cancer prevention and treatment, and gradual declines in cancer mortality in the United States since the early 1900s, African Americans have the highest death rate from cancer in the nation.” 

To read the full report, including the recommendations of the panel, go to 

www.nmanet.org/images/uploads/Documents/Cancer_booklet_a.pdf

The American Cancer Society’s National Cancer Information Center, which can be reached at 800-227-2345, offers a wide variety of support for non-English-speaking cancer patients and their families. The Spanish-speaking team at the call center includes counselors who offer general cancer information as well as a Spanish-speaking oncology nurse, a clinical trials counselor, and a counselor to help callers stop smoking. The counselors are also able to e-mail information in Spanish.

The ACS has a variety of Spanish-language materials, as well as some for Chinese, Korean, and Vietnamese speakers, which can be accessed at 

For languages other than Spanish, the call center uses the AT&T language line, which provides over-the-phone translation services, or refers speakers to specialists in offices around the country.

Hip-hop and spoken-word artist Michael Ellison, who goes by the moniker “MIKE-E,” wants his audiences to throw something at him—but only if it’s cigarettes in response to his message about the tobacco industry. 

For more than a decade, Ellison, who was born in Ethiopia, has been integrating an anti-tobacco message into the performances of his group Afroflow, which includes fellow musicians Kenny Watson, DJ Invisible, and Sowandé Keita. Ellison began writing socially conscious songs and poems as a teen, and began performing after his college graduation and a move to Detroit in the mid-1990s. 

“Disgusted” by the tobacco industry’s use of African-American artists to sell their products, Ellison began performing his own poems and songs about the abuses of the tobacco industry, a message made clear in “Legalized Genocide”: 

“Legalized genocide is running rampant worldwide/In the 20th century it has taken 100 million lives/Stateside, nearly half a million Americans will die this year alone/It is genocide, but it will not remind you of Rwanda or seem like Sierra Leone/There will be no machete made images of little kids with missing limbs/Nor Sudanese refugees imbued with misery/In this conflict, the afflicted will not be considered victims/Assaulted based on religion, race or ethnically motivated hate/They will be seen as adults and teens who simply chose their own fate/So despite constant propaganda, subliminal trickery and inflicted misery/There will be little to no sympathy.”

“When you have a product that is a proven killer when used as directed, that can be sold legally to children, that is deplorable,” Ellison says. 

But instead of addressing the all-too-familiar health issues of smoking, Ellison takes another approach, putting smoking in a social context that his primarily African-American audiences can appreciate.  

“In particular, in Detroit, when I was performing spoken word with heavy African-American audiences, I would draw links to tobacco industry being rooted in slave labor and the disproportionate advertising aimed at the African-American community,” Ellison says. With a call to stop smoking, Ellison would invite his audiences to give up cigarettes right then by tossing them on stage, something many were willing to do.

When the American Cancer Society caught Ellison’s act, it saw a way to get to an audience it wanted to reach, says Linda Blount, the ACS’s national vice president of health disparities. What followed was a cross-country, ACS-sponsored bus tour of college campuses and other stops for Afroflow.

“High school and college-age kids hear him because Afroflow delivers the message the way kids can hear it,” says Blount. “We have pictures of him surrounded by cigarette butts on stage.” 

With successful tours in 2007, 2008, and 2009, Ellison and Afroflow will be back on the road in 2010. For more information on Afroflow, to listen to their music, and for a tour schedule, go to 

The American Cancer Society’s third conference on health disparities, Health Equity: Through the Cancer Lens, was held in July and focused on reducing cancer health disparities with community intervention, advocacy, and communication.

Attendees heard repeatedly from presenters that addressing core issues of access and prevention need to be acted upon, as they have been long identified through research as critical to the health care reform debate.

Otis Brawley, MD, chief medical officer of the ACS, says results will come from being faithful to the science while being practical and allocating resources to what has been shown to work. An example would be screening for breast cancer.

“This is not getting more mammography machines,” Brawley says. “It’s just getting women to the doctor for the care that they need. And we don’t do it.”

Brawley says the percentage of women who indicated they had a mammogram in the past year increased from 50 percent in 1991 to 64 percent in 2000, but declined to 61 percent in 2006, according to data from the Centers for Disease Control and Prevention.  

During this time, mammogram utilization varied considerably by educational attainment, he explains. “The prevalence of women with less than a high school education reporting a recent mammogram was approximately 10 percentage points lower than the prevalence for all women. Even more striking is that the prevalence for women with no health insurance is approximately 25 percentage points lower than the prevalence for all women.”

Brawley says it’s not so much about race as it is about access to quality care.

Brawley quoted statistics that an estimated 57,000 breast cancer deaths were averted between 1990 and 2005 due to screening, early detection, and aggressive treatment. Brawley challenged the audience to think beyond racial differences, presenting one slide that read:

  Mammography rates were greater than 80%

  All women with an abnormal screen got it evaluated

  All women with breast cancer got optimal therapy

In addressing the disparities of outcome between African-Americans and Caucasians, Brawley says it’s not so much about race as it is about access to quality care, referring to research of retired African-American women who were in the military or whose husbands were in the military. “Black women in the military do not have two-thirds, or closer to 70 percent, of the [breast cancer] mortality disparity that blacks in the United States have,” Brawley says, attributing the differences to a history of preventive care and access. For “virtually every cancer, [there are data to show that] equal treatment equals equal outcomes,” he says.

News and perspectives from the minority community.

Highlights

Carmen Ortiz, PhD, executive director of San Francisco-based Circulo de Vida, a support group for Latinas, is angry. Yet again, a doctor has asked a Spanish-speaking patient to have a family member interpret the bad news that their loved one has cancer.

“I had one daughter who was asked to interpret for her mother,” Ortiz says. “When the doctor told her what to tell her mother, which was that she had advanced cancer, the daughter got hysterical. The mother didn’t speak English but could read her daughter’s response.” 

Ortiz was diagnosed with breast cancer at age 39 in 1988, four months after finishing her graduate studies in psychology. At first, she says, she didn’t want anything to do with cancer. Then four years into her career as a mental health counselor, one of her clients was diagnosed with breast cancer. As she counseled her, Ortiz says, it changed the course of her career. She became involved in cancer support, ultimately assuming the job of facilitator of a San Francisco breast cancer support group that had dwindled to two members.

Ortiz moved the program closer to the Latino community, changed the meeting time from 3 p.m. to 6 p.m., and included dinner to promote socializing. Soon, she had built four support groups—one specifically for young women&mdash;filled with Latinas from all over the San Francisco Bay Area. In keeping with the family focus, women are encouraged to bring their children, who meet in age-appropriate groups with a professional facilitator to have their own questions answered. 

Today, thanks to the director of oncology services at San Francisco General Hospital, Ortiz is present when Latinas are diagnosed at the hospital.  

As Circulo de Vida’s only full-time staff, Ortiz has trained a number of survivor volunteers, who have been in the support groups, to be “angelitas”—little angels&mdash;and reach out to the newly diagnosed until they have sufficiently recovered or until they join a support group.  

Ortiz says women stay involved in Circulo de Vida (

; 415-648-9423) as long as they want because even long after recovery the group provides support and caring. And, says Ortiz, no one ever asks a family member to leave a family.

Content

Completing the Circle of Life

Why do we need to understand the various aspects of cancer that affect minorities, and why are they important to 

Few would disagree that we should address unique barriers to prevention and care when it comes to minorities. But what can the details of cancer risk and outcome actually teach us about the biology of cancer and how it can have an impact on everyone at risk for or with cancer? Well, the story continues to unfold.

It is a story of convergence of the social, economic, and biological sciences—a story that began with the observation that certain minorities have a higher mortality rate from several types of cancer. It is still debated whether there is something biologically different, but some of the newer gene profiling technologies are now confirming that this is the case. In fact, as you’ll read in “

," there are numerous examples where we see how differences in our genetic backgrounds are manifesting themselves as differences in how cancers behave. Ethnicity represents genetic islands, and certain heritable diseases cluster in groups of individuals based on geographic and racial genetics.

But, of course, cancer is a result of nature (&shy;genetics) and nurture (environment), so similarly, environmental and lifestyle factors shared by &shy;minority groups also can be very instructive about cancer biology. But there have been those who argue that the socioeconomic forces are much more responsible for the worse outcome seen in, for example, African-American women with breast cancer. In the military, where access to care is equal for all, the racial difference in outcome is not seen. So an understanding of the barriers to care that exist in certain subsets of our population can be applicable to everyone—many affluent people also experience similar barriers. If education and alternate models of health care delivery can work in disadvantaged individuals, maybe they can also be the solution to skyrocketing health care costs for all of us. 

There will always be much to learn across the whole social-biological spectrum, and this area has become a high priority for research funding for understandable reasons. In this issue, we provide a cross-section of the cultural and scientific aspects of cancer in minority populations. I hope it allows you to appreciate the scope of the challenges, as well as universe of opportunities, that may arise from increased attention and research.  

Editor's Page

Why issues that impact minorites with cancer affect everyone.  

Minorities and Cancer: A Lesson for Us All

The unexpected van is one of many ways in which the Intercultural Cancer Council (

; 713-798-4614) reaches out to America’s underserved. As part of its “Voices of the Community” project, the ICC gave $4,500 in seed money to Lyons, founder and president of Women of Faith and Hope, Inc., a Philadelphia-based breast cancer support group for African-Americans (

; 215-424-4180). The donation was a huge help, she says, covering newspaper ads, cancer literature, food, flowers, and a donation to the church that hosted the program.

The broader aim is to knock down barriers for everyone for all diseases. 

Established in 1995 and headquartered at Baylor College of Medicine in Houston, the ICC works with hundreds of community-based groups across the country. The goal is to give them a national voice in the fight for quality health care. Ninety percent of the work targets cancer, says executive director Jay Silver, but the broader aim is to “knock down barriers for everyone for all diseases.”

Clinical trials should represent the population that has the disease, says Silver. Instead, they’re largely filled with “white males between 25 and 55.” In underserved communities, people may not be able to take off from work or afford transportation to a medical center. What’s more, some mistrust the medical establishment or may be reluctant to go public with a cancer diagnosis.

The ICC seeks to change the face of those trials. Using a grant from a pharmaceutical company, it has set up a program called EDICT (Eliminating Disparities in Clinical Trials). In addition, the ICC is now advising a national cancer organization on the best way to develop programs in the Latino community. It can be as simple as teaching cancer care professionals that “in some cultures, you look a person in the eye and others you don’t; some extend their hand to shake hands, others don’t,” says Silver. 

At the most basic level, the ICC is about listening to its constituents and helping them reach a broader audience. Venus Ginés, a breast cancer survivor who has Puerto Rican and Mexican roots, recalls going to an ICC meeting in 1995 and seeing few Latino faces. “How can you call yourselves intercultural if you only have a handful of Latinos present?” she demanded. 

Today, she no longer asks that question. “I consider myself the poster child for ICC,” says Ginés, a board member and an activist in her own right as founder of Dia de la Mujer Latina (

; 713-782-1800), a group that educates Latinas about cancer. Ginés is one of the many “voices of the community” who help the ICC live up to its name.

When an official-looking white van drives into gritty North Philadelphia, a fair assumption is that it’s a police command vehicle, says Novella Lyons. But not the van that arrived on April 28, 2007. This white vehicle housed a mammogram machine for a health fair Lyons was running. Twenty-one women got a mammogram; for some, it was their first.

Cultural Connections

Tillia Raiford-Fox, a patient navigator at Atlanta’s Grady Memorial Hospital, comes from the ranks of the medically underserved. In November 2005, the Smyrna, Georgia, woman found a lump in her breast but put off getting a mammogram for months. 

"I was in a predicament a lot of our people are in,” says Raiford-Fox, 63, an African-American. “I didn’t have &shy;insurance.”

Supported by a patient navigator, she had chemotherapy and surgery at Grady for a stage 2 tumor. “My navigator was there,” she says. “They’re there to motivate you, to uplift you, to steer you in the right direction.” When she finished treatment in mid-2007, she was eager to pay the favor forward.

In 2008, she trained as a navigator herself, to guide others through the ins and outs of breast cancer. Now, as part of the Avon Foundation Community Education and Outreach Initiative, Raiford-Fox assists newly diagnosed patients at Grady by telephoning them, attending appointments with them, and linking them to needed resources.

She readily ticks off some benefits of navigators for patients: a chance to ask lots of questions of someone who isn’t as rushed as physicians often are; help understanding test results; and connection to aid and support. 

The patient navigator &shy;approach was launched in 1990 at the Harlem Hospital Center in New York City to help overcome barriers that underserved patients face and to promote timely screening and treatment. Many hospitals and advocacy groups have developed their own programs. In addition, the American Cancer Society (

) has an online navigator program; also, cancer information specialists can be reached at 800-227-2345.

To help uninsured or underinsured patients with financial and other burdens of cancer, Raiford-Fox often suggests resources including CancerCare (

4673); a local Salvation Army; HealthWell Foundation (

,? 800-675-8416); Patient Advocate Foundation (

, 800-532-5274); and Patient Access Network Foundation (

For each of her cases, Raiford-Fox aims to build and sustain trust and harmony. “Every cancer is different for every &shy;patient.”

A Georgia breast cancer survivor shares her experience as a patient navigator, and the importance of this approach.

Winter Supplement 2009 | CURE