The American Cancer Society expected that nearly 190,000 new cancer cases would be diagnosed in black people in 2016. It's a fraction of the total of 1,685,210 cases in the US, but disturbingly, the ACS says black patients have the highest mortality rates and shortest survival of any racial and ethnic group in the country for most cancers.
Doctors and experts have been trying to figure out why this is, and now the National Cancer Institute has given a five-year, $9 million grant to researchers from the Karmanos Cancer Institute at Wayne State University in Detroit to investigate the interactions behind these disparities and learn how to improve survival rates and quality of life and reduce financial burdens. The Detroit Research on Cancer Survivors (Detroit ROCS) study will be the nation's largest study of black cancer patients to date.
We talked to one of the study leaders, Terrance Albrecht, professor of population sciences at the Wayne State University School of Medicine, to learn more about this important research, which will focus on the four most common cancers: lung, breast, prostate, and colorectal.
What do we already know about cancer in black patients? What is there still left to learn?
I think it's a little stunning that in 2017 there are still questions. We know that we have these disparities when it comes to African American cancer rates compared to other ethnic groups—particularly in Southeast Michigan. In metropolitan Detroit, their rates of cancer and mortality exceed whites in the area and blacks nationwide.
We've been studying the reasons behind those disparities for some time and, certainly, individuality, genetics, access to care, comorbid health conditions [having at least two chronic diseases or disorders], and even medical mistrust contribute. But we don't understand how all of these things interact.
For instance, you could have a genetic predisposition to lung cancer, but that doesn't mean you'll get it. But if you are a smoker, have inadequate healthcare, and other health problems, these things interact and increase your risk. We know [cancer] is not just biological, it is related to the social and behavioral conditions in which people live and work.
That's what our study will help us do—we will be able to look at those interactions. It's our job to improve cancer treatment outcomes for everyone, but clearly also to rectify this disparity. You need large funded studies in order to compile enough data to get to the results we're looking for. And the funding is challenging to do these kinds of studies, and that's one reason why there is such a need for support from the National Institutes of Health. This is really one of a kind.
Why is it important to look at Southeast Michigan specifically?
We've been investigating this for years in the metropolitan Detroit area, which is comprised of three counties: Wayne, Oakland, and Macomb. In Detroit, at least 82 percent of our city self-identifies as African American. Detroit is an important place to investigate the African American population and it's long overdue.
Are there other researchers analyzing other groups of people?
There are various research teams across the country that are looking at other racial and ethnic groups, such as immigrant populations, Arab Americans, and low-income rural residents. Then, there are other special populations, like the elderly and LGBT. The number of groups who are disproportionately experiencing burdens from cancer are expanding.
What exactly does the study involve?
We are one of a number of SEER [Surveillance, Epidemiology, and End Results Program] sites supported by the National Cancer Institute across the country. We are going to use this registry, which collects information on cancer cases in Southeast Michigan. The registry enables us to sample and approach people soon after [they get a cancer] diagnosis.
We'll enroll them in a baseline study where they can answer questionnaires about diet, physical activity, family history, quality of life, access to resources, and prior medical care. From there, we will be able to collect tumor and blood specimens so we can look at genetic factors. We'll also focus on caregivers of these patients because the pressure and burden on caregivers is huge.
We will follow more than 5,500 survivors over about five years. That will give us a sense of how well people are doing. From there, we'll have the opportunity to write collateral studies and propose interventions to improve cancer outcomes.
What's an example of an intervention?
Clearly there are a number of lifestyle interventions, like improving diet and physical activity. We also want to look at modifiable factors that are related to access of care. For some, for instance, they can't afford care. There are services available to offset this financial burden, but if they don't know that, they can't use those programs.
Or, we want to have more people enrolled in screening programs, particularly cancer survivors who are at risk for recurrence or a secondary cancer. We also want to make sure we're in a position to help people ask more questions during treatment. We want to help them be more engaged in the decision-making process so that they're not only caught up in the experience of cancer diagnosis but also getting medical care that meets their needs.
How does access to healthcare play into all of this?
There's a whole area called "financial toxicity." The cost of oncology care is increasing and a lot of the drugs that are breakthroughs are still very expensive. Institutions like ours are a safety net for the underserved population in Detroit. If reimbursement from Medicaid is not there, the institution has to pick it up.
We're also interested in the indirect costs for patients and their families. Indirect costs are insidious. For example, if I have cancer and I start treatment, I might not feel well, I may become depressed and have overwhelming fatigue. Maybe I'm also an hourly wage earner who doesn't have the ability to take time off. That's a huge cost right there.
Or even transportation. How do people in some urban areas where transportation is poor get to the medical centers? That's one question you can ask on a survey like ours: how did you get to the medical center today? Did you use a taxi, bus, ask a friend, or drive your own car? Then, patients have additional costs, like gas and parking fees. For many people who are traveling beyond their local area, once you start exhausting all of their resources, cancer creates an even greater burden and debt.
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