Dr. Elisabeth Heath examines Jerry Jackson before a chemotherapy treatment. He is participating in a clinical trial the Karmanos researcher is conducting to see whether experimental drugs will help late-stage prostate cancer. (Todd McInturf / The Detroit News)
In many ways, Patricia Johnson and Augustus Vincent Jr. couldn't be more different.
Vincent lives in Metro Detroit. Johnson lives nearly 400 miles away in Newberry, a bucolic community in the state's Upper Peninsula. She is a retired first-grade teacher. He worked on the line at a General Motors plant for 30 years. She immediately pursued breast cancer treatment. He delayed prostate cancer treatment for three years. She's white. He's black.
What do they have in common? In addition to having cancer, each has a higher than average chance of dying from it.
Of Michigan's 83 counties, National Cancer Institute data shows that Luce County, where Johnson lives, has the fourth-highest cancer death rate in the state. As an African-American man, Vincent has nearly a 60 percent greater chance of dying from prostate cancer than a Caucasian counterpart.
That's why for the last decade, cancer researchers have been pushing to identify reasons behind the inequities between those who get and die from cancer. Now researchers also are exploring ways to eliminate the disparities.
"It's really about who gets cancer in the first place and what we do about it then," said Richard Lichtenstein, associate professor and disparity researcher at the University of Michigan School of Public Health. Cancer disparities can't be pinned on any one factor, he said.
"It's the whole spectrum from birth to death," Lichtenstein explained. "Certain people have inequalities and they face them throughout the process, and that's where the disparities come from."
People get cancer because of a combination of inherited risk, societal factors, environmental exposures and personal behaviors, said Dr. Christopher Lathan, an oncologist and researcher at Dana-Farber Cancer Institute in Boston. "But once you get cancer," he said, "there are things like access to care, which involves effects of the neighborhood like transportation and referral patterns, patient factors such as trust or health literacy, and provider factors such as communication skills, that combine to keep you from getting necessary treatment."
About 10 percent of cancer disparity research today is dedicated to genetics. Evidence suggests genetic differences between blacks and other ethnic groups could explain the higher death rates among blacks for certain types of cancer.
Among the studies: The Journal of the National Cancer Institute reports that a complex interaction of genes that control hormones and how drugs are metabolized is behind the increased likelihood of black women dying from breast and ovarian cancers, and of black men dying from prostate cancer. Researchers also have reported that the probability is higher for blacks getting and dying from colon and lung cancers.
And blacks, reports the Journal of the National Cancer Institute, are 49 percent more likely to die from early stage postmenopausal breast cancer than whites. The high breast cancer death rate among black women often shows the patient's age of diagnosis, cancer treatment or socioeconomic status is irrelevant, reports the May issue of the Journal of American College of Surgeons.
Heredity is behind about 10 percent of most cancers, including breast cancers, said Dr. Michael Simon, professor of medicine and oncology at the Barbara Ann Karmanos Cancer Institute in Detroit. The exception is lung cancer, which is largely caused by environmental factors.
Simon said each person has two genes, BRCA1 and BRCA2, but a woman can inherit breast or ovarian cancer if there is a mutation in one of those genes.
Dawn Spencer's father had prostate cancer, her mother had breast cancer and an aunt died from the disease.
"Everyone who has passed away on my mother and my father's side has had cancer," said Spencer, a 54-year-old Southfield resident who was featured last week on CNN's series "Black in America 2."
Simon said people who have more than one generation with breast cancer, breast cancer at an early age -- younger than 50 -- the addition of ovarian cancer in the family or breast and ovarian cancer syndrome, should be referred for genetic counseling and informed about genetic testing.
Spencer, who at age 47 was diagnosed with triple-negative breast cancer, a difficult-to-treat condition that primarily attacks black women, wants to know whether she has the mutated genes so her children are informed early enough to take preventive measures.
Genetic ties to cancer also are of significant interest to researchers because they could affect treatment.
Simon said if doctors know a woman who is beyond normal child-bearing years has a gene mutation, they may suggest she begin alternating breast MRIs with mammograms or may recommend the patient have her ovaries removed.
Similarly, genetics could alter the way cancer drugs are prescribed.
For the most part, before cancer drugs are made public, their effectiveness is tested in clinical trials. White people tend to participate in those trials more often than blacks, said Dr. Elisabeth Heath, associate professor of oncology at Wayne State University and oncologist at Karmanos.
However, she said, once the drugs are put on the market, they often are prescribed without regard to race.
"If we don't recognize this and tackle this, the treatment we offer patients may not be effective in one race over the other," said Heath, who specializes in treating late-stage prostate cancer. She is convinced it's essential for men, especially African-American men, to participate in clinical trials.
Though 62-year-old Detroiter Jerry Jackson has incurable prostate cancer, he is participating in one of Heath's trials. "It might not be able to help me, but it might help somebody else," he said.
Access to care
The roles access to care and quality of care play in the differences in cancer rates and deaths could, in part, be tied to geography and resource distribution -- such as communities, jobs, healthy food, etc., U-M's Lichtenstein said.
"Once somebody gets sick or is older in age and is susceptible to care, there are clearly issues such as access to screening, having mammograms, prostate checks, colonoscopies, all of those preventive things -- but they are not stopping you from getting the disease," he said. "We know resources are distributed differently and there could be geographic differences.
"If we got everybody good food and grocery stores in their neighborhood, if they had a good housing situation, good communities and good jobs, we would do a lot to prevent cancer. The way to make sure populations are healthier is to get them better communities, better jobs, better air to breathe -- and they will get cancer to a much lower extent."
He added: "If you think about people in the UP, they have a much harder time getting a prostate check or mammography because it's harder to get to a doctor. There are places in the inner city where it's hard to get to a doctor. Even people who live close to a major medical center may not have access to care."
In the UP's Luce County, cancer patients often travel hours to get the care they need.
To get six weeks of radiation therapy in Traverse City -- 3 1/2 hours from her home in Luce County -- Johnson stayed with her sister during the week and returned home on weekends. Now in remission, she takes turns with friends driving people to cancer treatment appointments in Petoskey or Marquette.
It's a hard day, said Johnson, 70. They drive two hours for a 10-minute appointment and then turn around for the two-hour trip back home, often with a cancer patient who may be sick or exhausted from therapy.
While Vincent doesn't have to travel far from his Westland home to see his oncologist at Henry Ford Medical Center in Dearborn, sometimes it feels that way.
"It's complicated," said the 71-year-old, who is visually impaired. "When I was living in Detroit, to get to Henry Ford Hospital on West Grand Boulevard, I had Metro Lift. Out here, I don't have anything like that."
When researchers at Henry Ford Health System's Josephine Ford Cancer Center began looking at their own patients, they found that black women were twice as likely as other women to be diagnosed with late-stage breast cancers. The men, they found, were twice as likely to have late-stage prostate cancer at diagnosis.
As a result, Henry Ford's researchers designed a study to see whether patients would have better health outcomes if they had help arranging annual screenings, appointments and rides.
Vincent, who participates in the study, said the rides the hospital provided did not help him initially because they were late or didn't show up. Now, he said, the hospital is using a new service he hopes will be better.
Dr. Robert Chapman, chief study researcher and the center's director, said men current on their prostate cancer screenings have increased about 20 percent and women current on mammograms have increased about 25 percent.
"At the end of four years, there's no question we will be able to show that with navigation, recruitment and facilitation, we're going to improve screening rates," Chapman said. "We're going to detect early cancers."
Money plays a part
Economic factors also hinder getting quality care.
"Our economic conditions in this state are taking us places we don't want to go," said Vicki Rakowski, chief operating officer of the American Cancer Society, Great Lakes Division who co-chairs the Michigan Cancer Consortium. "Because people are losing their insurance, they are not getting timely and adequate treatment."
As of June, the Michigan Department of Community Health reported 1.1 million Michigan residents, or 12.2 percent, were uninsured.
"Basically, working folks, people who are from day to day living paycheck to paycheck will most likely put off going to see the doctor because they have less flexibility in their lives to take care of themselves," explained Lathan, who also is an instructor of medicine at Harvard Medical School.
Lichtenstein agreed, saying "Once you are diagnosed, you might think people are going to be the same, but people with certain types of insurance like Medicaid or are uninsured are going to have a much harder time finding physicians to take care of them."
Dr. Otis Brawley, chief medical officer for the American Cancer Society, said he has seen women watch their breast cancer grow because they didn't have paid sick leave and didn't feel they could take the time off work for treatment.
Lathan added that the problem doesn't just affect blacks. "This applies across the board to people who are vulnerable: immigrants, new Latino immigrants, Asian immigrants."
And finances often determine whether someone will be screened for cancers. Karmanos' Dr. Simon said the general consensus among the medical community is that people from racial and ethnic minority groups are less likely to be tested for gene mutations because the tests are costly -- about $3,000.
Dr. Jean G. Ford, of the John Hopkins University Bloomberg School of Public Health, and his colleagues conducted a survey that revealed those who are screened for colorectal cancer were more likely to have an overall better health status than whose who weren't. So they analyzed what made an individual more likely to be screened. It turned out communication was a factor.
The study, which was presented in April at the American Association for Cancer Research's Science of Cancer Health Disparities Conference, found that patients who said their doctor explains things in a way they could understand were 50 percent more likely to be screened for colorectal cancer.
"The barriers to screening exist even when a population is insured," said Ford in a press release.
"One of the key interventions to promote screening appears to be better communication, which fortunately, is a barrier that can be overcome."
Karmanos researcher Terrance Albrecht is studying video recordings of dialogue during doctors' appointments to analyze how doctors and patients communicate about the patient's prognosis and medical treatment.
She noticed that only about 50 percent of blacks come to the doctor with someone, when about 82 percent of white patients have someone with them. Doctors, she explained, tend to share twice the amount of information when a patient is accompanied by someone else.
"There is a disconnect between what's being said and what people hear," Albrecht said. "It's one thing to want to do what the doctor says you should do, it's another thing to understand how to do it."
Kathryn Underwood, diagnosed last year with a rare type of lung cancer, said she took her husband with her when she visited her surgeon and oncologist.
"Once you hear that C-word, that's all you hear," said the 50-year-old Detroiter. "It's helpful to have someone with you to make sure you both hear the same things and so that person can help you with asking questions. You're so upset and distraught, you might get the information incorrect. If there's a dispute, there's someone else to help with what the doctor said or the diagnosis."
Years of intense research into why cancer disparities exist have yet to yield comprehensive answers.
Did Patricia Johnson get breast cancer because her great-grandmother, grandmother and mother had the disease? Is she more likely to die from it because she lives in Luce County?
"I really don't know why and it's a bit scary to think that cancer death is so prevalent here," Johnson said. "You know ... the odds could very well be against me."
Regardless of the reasons behind the disease and the mortality rates that come with it, Vincent chooses not to acknowledge the prostate cancer doctors said he has. He believes dwelling on it can make one die more quickly. "When somebody tells you you've got something chronically wrong with you, it tends to make you worry and it tends to make your body shut down," Johnson said. "That's why I call it thing-a-ma-jib.
"I take it as a joke," he said. "Even though my daddy had prostate cancer, I'm not going to let things worry me."