Metro Detroit gets grant for historic study of black cancer survivors

Bester King remembers the moment his doctor told him he had prostate cancer.

The Detroit native, who grew up in the North End, was 61, had just retired two years earlier and had known the pain of the disease’s prowess. Both his parents had died of cancer.

“I wasn’t afraid. I don’t think I was in shock or anything,” said King, now 77. “I remember feeling a calmness. My dad had prostate cancer and passed two days before his 65th birthday. But that made me more aware of prostate cancer, so it helped save my life. I started getting checkups a lot sooner than I would have. My mom was diagnosed with breast cancer and lived to 95.”

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King, who later also developed bladder cancer — and whose doctor also had both cancers — talks easily and forthrightly about his experiences. He hopes to recount those same experiences to researchers if chosen to participate in an unprecedented new project.

The Karmanos Cancer Institute and the Wayne State University School of Medicine just received a five-year grant to begin the nation’s largest-ever study of African-American cancer survivors — men and women — to examine why black people have a higher incidence of, and death from, cancer than other races. The National Cancer Institute wants to use the study to develop national strategies to prevent and combat cancer in African Americans.

The study, funded by a $9-million grant, will include 5,560 cancer survivors and 2,780 family members from Wayne, Oakland and Macomb County. It will allow researchers, through survivor’s words and analysis of biological specimens, to analyze the disease’s progression and recurrence and to examine the quality of life and mortality of black patients. Participants are being chosen randomly and confidentially from the Surveillance Epidemiology and End Results, or SEER database, a collection of cancer incidence, mortality, survival and treatment information.

The death rate for African Americans outpaces whites in all four major categories of cancer — colorectal, female breast, lung, prostate. The death rate for prostate cancer, for instance, was 35.9 per 100,000 black metro Detroit residents dying in 2011-13 compared with 17.1 per 100,000 white metro Detroit residents dying during the same period. The death rate for lung cancer was 56.3 per 100,000 black metro Detroit residents compared with 48.6 per 100,000 white metro Detroit residents.

“This study is critical to ensuring that underserved populations in Detroit and around the country benefit from new approaches for cancer diagnosis, treatment, and prevention,” Dr. M. Roy Wilson, president of Wayne State University, said in a statement. “Focusing on the complex factors that generate disparities in cancer among underserved populations, such as African Americans, will lead to better treatments and improved approaches to cancer care for all Americans.”

Dr. Ann Schwartz and Dr. Teri Albrecht, who applied for the new grant and will oversee the Detroit Research on Cancer Survivors (Detroit ROCS) study, said this research is "long overdue."

Wayne State has been looking at the metro Detroit population for years to understand why “African Americans are more likely to be diagnosed but have poorer outcomes than whites,” Schwartz said. “This has been a long time coming. Seeing that the disparities have not been well addressed in the literature, we felt that we could do the job here.”




The study comes five years after the Detroit Area Agency on Aging’s landmark study “Dying Before Their Time,” which found that Detroit residents die sooner than their fellow Michigan residents from the same diseases and that the city’s new elderly are as young as 50.  

Residents ages 50 to 59 (in Detroit and eight smaller, surrounding communities) had the same health problems as residents 60 to 74 in other parts of the state and die at a rate 131% higher than their peers statewide.

The higher mortality rate was driven mainly by Detroit residents, the study found, who have more chronic illnesses, require more hospitalizations and have less access to health care than people of the same age in the rest of the state.

The study also comes after decades and decades of lagging medical research specifically on women and people of color. Government agencies spend billions and billions of dollars learning more about how diseases work and how to improve outcomes, but fewer studies are specific to women and people of color than to white men. The National Cancer Institute itself spent about $4.5 billion on research two years ago, according to its fiscal 2015 budget, the most recent data available. This study — at $9 million — is a drop in the bucket compared with what is spent on medical research overall.

But it's our bucket, our region — and a huge opportunity to make a difference in how future patients are treated.

Dr. Joanne Elena, a director at the NCI’s epidemiology and genomics research program, said there have been larger studies of cancer survivors of all races, and larger studies of cancer incidence “but this is the largest study looking at a wide variety of variables for African-American survivors.”

“This study reflects that health disparities are a priority for the National Cancer Institute and for the National Institutes of Health," she said. NCI, she added, is particularly interested in trying to understand what influences outcomes for African Americans and to develop strategies to intervene on cancer prevention and curb mortality.

“Cancer is a really complicated disease, and I wish we had the answer for all cancer survivors by demographic whether they live in cities or rural areas,” she said. “They are many health disparities — whether by race or whether they live in cities or rural areas. I think that the NCI has long been interested in how we can best promote the health of all cancer survivors but this particular study has been years in the development."

Elena, Schwartz and Albrecht said the medical research community is well aware of the uphill battle it faces because of African Americans’ valid fears about participating in medical studies. During the 2011-15 fiscal years, 9% of the patients in NCI-funded clinical trials were African Americans and 22% were minorities.

History is marked by instances of African Americans being abused or misused in the name of science, including the infamous Tuskegee experiments.

For 40 years, the U.S. Public Health Service observed the progression of syphilis in 399 poor, black males — mostly sharecroppers — in Alabama, without treatment, under the guise of providing them free health care.  By the experiment’s end in 1972, 28 men had died of syphilis, 100 died of complications from syphilis, 40 infected their wives and a total of 19 children were born with syphilis.

This is not that.

This is a chance to make a difference in the treatment of cancer in a population of people it attacks more often and kills more quickly.

The Detroit ROCS will be seeking information, mostly through survey questions and small testing, not the administering of drugs.

“This is not a clinical trial, but an observational study,” Elena said.

There was no place better for this study than Detroit, Elena said. Metro Detroit's tri-county area accounts for more than 70% of Michigan’s African-American population. About 21,000 people in these counties are diagnosed with cancer every year.

Karmanos CEO and President Dr. Gerold Bepler praised Wayne State and Karmanos' long partnership conducting cancer-related, minority population research in metro Detroit.

The study "and the tireless commitment of Drs. Schwartz and Albrecht and their dedicated team of researchers will further extend this legacy, he said. "It creates a better understanding of why these disparities exist within the African-American population, while communicating and engaging those most impacted to help improve outcomes and survivorship for future generations."

”One of the biggest benefits of the study beyond  strategies for the future is improved patient care, Albrecht said.

“Several of our medical oncologists are directly involved in the study, and together we are already developing training programs for our residents, fellows and community oncologists,” she said. “These programs will be directly informed by what we learn about survivorship from this large group of African-American cancer survivors.”

Elena said, her "greatest hope is that we can identify modifiable factors, things that will give us a key to where we should spend our time and resources to really impact the health of African-American cancer survivors."

 Albrecht said the team of researchers have already begun to identify and invite survivors of breast, lung, colorectal and prostate cancer to participate.

That means if you get a confidential phone call to talk about your cancer, please do it to learn more about what happened to you and to help doctors improve the lives and outcomes for other African Americans.

“We’re going to be asking a multitude of questions about their health, their behavior, the treatment they’ve received,” she said. “And then we’ll ask them to identify a caregiver who might also participate.

“To understand a cancer diagnosis is to know it does not just affect the patient but the family,” she said.

The team also will test saliva and tumor tissues and follow the participants for five years to chart what happens in their lives.

Schwartz, a 60-year-old genetic epidemiologist who grew up in Oak Park, and Albrecht, a 63-year-old social and behavioral scientist who came to Wayne State and Karmanos from the Moffitt Cancer Center in Tampa, called the study a culmination of years of hope. They began working together in 2003.

“To have the opportunity — the gift — to be able to work in Detroit and to secure the kind of federal funding to engage with community partners to study treatment patterns and decision-making — this is critical for closing the gap on cancer disparities,” Albrecht said.

Schwartz said Detroit offers the nation a huge opportunity.

“We can do things that others can’t do across the country because of our large African-American population,” she said. “It’s incumbent for us to figure out what’s going on.”

What they need now are participants, survivors willing to open up their lives to help save other lives.

Deborah Coney, 66, stands ready and willing.

Her grandmother died from complications of breast cancer, which led Coney to get regular checkups. The disease skipped a generation. But then it struck.

“My grandmother never smoked or drank. She raised 10 children. … Out of four daughters, none of them were diagnosed with breast cancer but each one had a daughter diagnosed with breast cancer," Coney said.

She got the news in 2001, after a routine mammogram detected a lump that wasn’t palpable enough to be felt during a self-exam.

Coney, a Detroit native and registered nurse, said she had a hysterectomy the year before and took estrogen for a year.

“Whether it was estrogen supplement replacement or family history, we’ll never know,” she said. “When my doctor received the results, she called me at home. She felt that by the time we made another appointment, it would take too long. Although I’m in health care, it was still very traumatic for me."

It was 10 o’clock at night, but she called her sister who came right over. She said she had part of her breast removed, but told the doctor before the operation that he had permission to take the whole breast.

“I did not want it to come back,” she said.

The cancer became a member of the family, requiring constant attention and extra work. She had to fit treatments into her work schedule because she didn't have medical benefits at the time of her diagnosis.

“I’d have my radiation treatments toward the end of the day before picking up my children from school,” she said. She added that her marriage also ended after the surgery.

 She has been cancer-free for 16 years, but said she’ll gladly participate in the study, if invited. She said it should have been done a long time ago.

“I think that’s it’s a disservice, especially in the Detroit metro area,” she said. “I don’t know the statistics on how many women of color are in the state of Michigan. But I think it’s a disservice to women of color because they should have been doing this sooner, definitely sooner."

So if your phone rings, if you're an African-American cancer survivor, please answer and say "Yes."

Contact Rochelle Riley: rriley99@freepress.com. Follow her on Twitter @rochelleriley.