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AACR Seeks Solutions through Inclusive Research

Nearly 80 percent of children with acute lymphocytic leukemia (ALL) can be cured today.

Although this statistic holds true for Caucasian children in the United States, for Hispanic and American Indian children … not so much.

Cheryl L. Willman, MD, director and CEO of the University of New Mexico Cancer Center, is co-investigator on a study looking at outcomes in children with leukemia across the United States. She is also one of three co-chairs for the Second American Association for Cancer Research Conference on The Science of Cancer Health Disparities in Racial/Ethnic Minorities February 3-6 in Arizona.

Willman explained through the use of whole genome technology … rather than self-reporting … that she and other researchers were able to get a true racial composition of study participants. Children of Hispanic or American Indian ethnicity did not respond to the standard treatment regimen in the same manner as other children with ALL, and those with both Hispanic and American Indian heritage fared the worst of all.

Willman and her co-chairs, Elena Martinez, MPH, PhD, and John D. Carpten, PhD, look to the membership of the AACR to try to uncover the science behind the best protocols and preventive measures for the full spectrum of the population taking into account gender, race and ethnicity.

Coming from New Mexico, Willman has a unique perspective in that her home base is one of the few "minority majority" states with a population that is 43 percent Hispanic and 10 percent American Indian.

"Back in the '60s, we were one of the first states to start a statewide tumor registry program," she noted. "We track the incidence and deaths from every type of cancer, and that's by state mandate. Forty years later, we have the largest databank on cancer rates and mortality in Hispanic and American Indian populations in the world," she said.

Willman added this wealth of information has also uncovered interesting patterns and trends over time. When the state began tracking in the 1960s, for example, Hispanic men had a very low incidence rate for colorectal cancer – well below the rates for Anglo men. Today, however, that no longer holds true. "Why?" questioned Willman. With clues that point both to biology and ecology, a growing number of researchers seek answers to these types of questions.

Co-chair Martinez, who is a professor of epidemiology at the University of Arizona, is a principal investigator in a multi-site study of breast cancer in Hispanic women – the Ella Binational Breast Cancer Study. Three separate presentations from the study, which looked at women both in the United States and in Mexico, will be made at the AACR conference.

"The study actually started about three years ago, but it's still ongoing," noted Martinez. "We're still recruiting. The goal is to recruit a thousand women … 500 in the U.S. and 500 in Mexico. We're at about 680 right now."

The study, Martinez continued, is important because, "We know so little about breast cancer in Hispanic women." She added that the first step is to characterize the various subtypes of breast cancer in the Hispanic population and collect data before researchers and clinicians can effectively approach treatment and prevention protocols.

So far, the study has found that Hispanic women fall somewhere in between Caucasian and African-American women in the diagnosis for Triple Negative Breast Cancer, typically a more aggressive form of the disease. The Triple Negative rate in black women is about 25 percent compared to 10 percent in white women. Data collected in the current study indicates a rate of about 19 percent in Hispanic women and a strong familial association.

"Our hypothesis is in the Hispanic population, there is a strong genetic predisposition to having Triple Negative Breast Cancer, and to our knowledge this has not been reported in the literature," Martinez said. She noted the familial link isn't necessarily true among African-American women who are diagnosed with Triple Negative.

BRCA 1 & 2 mutations, which have been identified as two major causes of inherited breast cancers, crop up with greater frequency among some ethnic groups such as the Ashkenazi Jewish population. Researchers now believe Hispanic women may also have a higher rate of these mutations.

"The second presentation is one that is looking at predictors or factors that lead to breast cancer detection and screening," continued Martinez. She added that early detection through mammography was most ideal, but the study has found close to 70 percent of the women involved in the study found their breast cancer through self detection.

Interestingly, she added, the national numbers for mammography screening are very similar in women 40 and over whether they are Caucasian, African-American or Hispanic … ranging between 77-80 percent. Yet, tumors are being found through self exams for African-American and Hispanic women, when the cancer tends to be at a later stage.

"Women are getting screened, but their cancers aren't being picked up. There's this paradox that we don't understand," Martinez noted.

Equally disturbing is the amount of time that passed between a woman feeling a lump and going to see a physician. For those who waited a month or more, the most common reason for the delay was a lack of insurance and resources to afford care.

The final presentation from the study compares data sets from the two sites in the United States (Arizona and MD Anderson in Houston) and the three locations in Mexico. While many factors are similar for Hispanic women in both countries, the research has uncovered a higher proportion of family history of breast cancer in the United States as compared to Mexico. Martinez said the average age of diagnosis is also younger in America (49 in the United States vs. 54 in Mexico).

Although the information being gathered currently leads to even more questions, Martinez said it's a starting point to "identify the best treatment to benefit these women with a goal of eliminating or diminishing the disparities that exist."

She added breast cancer research has come a long way. "If you look at the survival in affluent, white women, it is phenomenal. It's a huge success story. The problem is this survival and this success story hasn't been translated to all populations."

The bottom line, researchers believe, is getting a broader spectrum of the population into clinical trials. Daniel Dohan, PhD, associate professor at the Philip R. Lee Institute for Health Policy Studies at the University of California – San Francisco, said one of the problems is a lack of incentive to recruit minority populations.

Dohan is scheduled to present findings of a qualitative research study that looked at the makeup of clinical trials in the community setting, academic arena and healthcare safety net locations.

"We found that in each of these settings, it was difficult recruiting diverse patients into trials," Dohan said. "We saw there were different challenges in each of these places."

In academic and private settings, Dohan noted, "The clinical researchers are trying to get people enrolled and papers published, but they don't get extra credit for recruiting diverse populations so they are going after whoever is easiest."

Although he and co-author Galen Joseph, PhD, found a greater desire to encompass diverse populations within the safety net setting, there was a much greater emphasis on providing clinical services.

"Folks there are trying to cure people's disease," he said of the overwhelming priority. "They want to provide access to care but not necessarily access to clinical trials."

The NIH Revitalization Act of 1993 mandated inclusion of minorities in clinical research. However, Dohan pointed out that most private trials … such as those sponsored by pharmaceutical companies … are not under the strictures of the mandate. As for publicly funded trials, the act did not come with a budget to provide resources to reach minority populations such as translation services. Dohan said one possible way to change the status quo is to create a system where clinical trials bring more resources to the table.

"It's an equity issue," Dohan said. "All segments of our society should be included in this work." He added, "I think the more people we have participate, the better sense we get of what works in the real world as opposed to in the laboratory setting."

Willman echoed the sentiment. "If I'm going to impact cancer, I have to look at real data differences in different communities. And if I'm not doing that, I'm really missing the boat. I've got to understand the patterns, communities and disparities, or I'm not going to be effective."

Tags:

AACR, American Association for Cancer Research, Cheryl Willman, clinical trials, Daniel Dohan, health disparities, Hispanic breast cancer, M. Elena Martinez, oncology

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