A problem of social injustice
Research alone will not close the cancer gap
Harold Freeman, M.D., and Jane Weeks, M.D., discuss what needs to be done to reduce the disproportionate impact of cancer on racial and ethnic groups, the poor and the elderly.
Freeman is president and founder of the Ralph Lauren Center for Cancer Care and Prevention in New York City, and professor of clinical surgery at Columbia University. A leading authority on the link between race, poverty and cancer, Freeman has served as president of the American Cancer Society, chairman of the President’s Cancer Panel and director of the National Cancer Institute’s Center to Reduce Cancer Health Disparities.
Weeks is professor of Medicine at Harvard Medical School, professor of Health Policy and Management at the Harvard School of Public Health, and chief of the Division of Population Sciences at the Dana-Farber Cancer Institute. She also is co-leader of the Outcomes Research Program at the Dana-Farber/Harvard Cancer Center, which aims to “enhance the outcomes, including efficacy and cost-effectiveness, of interventions to prevent and treat cancer.”
They spoke with Lens editor Bill Snyder via conference call in 2006.
How well are we doing in reducing disparities in cancer incidence and outcomes?
Why aren’t we closing the gap?
Weeks: It’s possible that patients may be poorly informed about effective treatments and/or are unequipped to deal with the health care system to make sure that they get effective treatments. They may have preferences for treatments that are associated with poorer outcomes.
Physicians caring for minority patients and elderly patients may be unaware of the current evidence, or they may have biases that cause them to selectively give less effective treatments in those settings.
They may also have inadequate evidence to guide the care that they give. This is particularly a problem with the elderly where there have been so few clinical trials in treatment of elderly cancer patients—and I might point out that cancer is largely a disease of the elderly—that we really don’t know whether the same treatments that are useful in younger patients are also useful in older patients.
Finally there are potential problems in the structure of the health care system itself. So patients may face difficulty accessing the health care system. They may have difficulties with coordination of care that causes key components of their treatment to be left out. And providers may have inadequate reimbursement to deliver high quality care.
That’s a very long list of potential reasons for these disparities and we need to understand which items on that list are in play if we’re going to have effective strategies for coping with the problem.
Freeman: I argue that there are three major factors that cause disparities. And they are, first of all, whether or not people have resources, whether it’s poverty of lack or insurance…
Second… is what I put in the category of culture, meaning the culture as a determinant of lifestyle, attitude and behavior, values, belief systems, communication systems… how people behave including the culture of the caregivers themselves…
Then there’s a third element that overlaps both of those circles which I call social injustice… whether or not people have been treated fairly in the system.
You and colleagues across the country are following hundreds patients with lung and colorectal cancer. How will this help reduce disparities?
We’re nearing the end of the study and I expect over the next year there will be a flurry of publications that begin to address some of these questions.
What impact has patient navigation had on cancer disparities?
Freeman: This is a concept that I invented starting in 1990 at the time I was at Harlem Hospital as director of surgery ...
We had published a paper showing that (of breast cancer) patients who came to Harlem Hospital over a 22 year period ending in 1986… only 39 percent of them were alive at the end of five years, compared to about 70 percent in the country as a whole at that time…
This is a problem throughout the nation related to people who are diagnosed and treated too late… I concluded that barriers to getting through the health care system was a fundamental issue for people who were poor and uninsured, and living in communities such as Harlem.
So we set up a program called patient navigation… (to assure that) when people get a test… they will get rapidly treated. We began to see real dramatic results… In the six-year period ending in 2000, the five-year survival of breast cancer patients at Harlem Hospital was 70 percent, compared to the previous 39 percent.
How important are cohort studies and epidemiological research?
Weeks: I think Dr. Freeman’s story about the navigator program, it’s a little like penicillin. You know, it’s so obviously worked that it’s definitely worth pursuing.
But what other things would work? Are there lower cost alternatives that would also work? Do we best put our resources into reengineering the health care system or providing one-on-one support for individual patients? I think those are the open questions, and the best way to begin to answer those questions is with cohort studies and epidemiology.
It’s where research always starts. It generates hypotheses. It generates ideas. Then you can narrow down with a randomized trial of a specific intervention and test to see whether it works. It’s very inefficient to do that without first understanding the lay of the land, and that’s what the cohort studies and epidemiology do for you.
Isn’t it difficult to ensure continued funding for studies that last a long time?
Weeks: I think it is true and there are several reasons for that. One of them is the equity issue.
If you are a congressman and you have great health insurance and disparities are not a part of your life and you’re looking at the way the NCI spends research money, you want them to spend every single dime on finding the cure for the cancer that you might get. It’s human nature.
And when research funding is ample and there’s plenty to go around, it’s also great to spend some money on understanding the causes of disparities. But when the budget shrinks, as it is right now, that’s the first thing to go.
Are we not investing enough in these kinds of studies?
Weeks: I would say we are absolutely not investing enough.
Freeman: I fully agree with the need to invest more money in these areas… but maybe even an overriding issue is that the problem of disparities finally comes down to the delivering what we already know…
There is this huge disconnect between our discovery system and our delivery system… To the extent that we don’t connect what we find to helping everyday people, I think it’s a moral and ethical dilemma…
The biggest thing we could do to reduce disparities this day and this year would be to apply everything we know, that we believe should be done for people, to all people, irrespective of their race, their ethnicity, their age, their sex or their ability to pay. That I think is the great challenge ...
You cannot solve the disparities problem solely within biomedicine. Something else has to occur… If the problems are occurring in communities, which they are, then we need to bring in the social scientists like sociologists, anthropologists, even the historians to help us to understand what’s going on in our communities.
And if the problem is inequity, and at its core I believe it fundamentally is a problem of inequity that drives disparities, we need to consider even the extraordinary possibility that, at its heart, maybe disparities are related to human rights and civil rights.
Won’t deciphering the genetics of abnormal growth through The Cancer Genome Atlas project, for example, help reduce disparities by leading to more rational and successful treatments?
Weeks: Obviously it is a critically important challenge in oncology now to move from a one-size fits-all to a more tailored approach to treatment. But my guess is that this movement is going to make care in specialized centers even more important. It’s going to make cancer care even more expensive, and if anything it’s going to widen rather than narrow the pre-existing gaps.
So I think there is a moral imperative to address inequities at the same time that we are pushing forward the science, otherwise the situation will get worse, not better ...
Careful studies have shown that when African-American patients, for example, are treated in the same way as their white counterparts, their outcomes are very similar.
The gaps that we are seeing are not about biology. They’re about failure to get what we know works to the patients who need it. And as what we know works changes over time, those disparities are not going to go away. This is not a problem of genetic differences. This is a social problem.
Freeman: The peculiar thing about progress without equity is that the cutting-edge progress tends to widen disparities as opposed to narrowing them. The things that you discover are going to be very costly for an individual patient—to have a genetic profile, for example.
I think we should push forward with this work, and I’m certainly in favor of spending what is necessary to move our understanding of carcinogenesis at the molecular level ahead… But the moral problem is that as we do that we don’t seem to be paying attention to applying the technology to all people.
Weeks: I think the message that we need to communicate to our leadership is that, as in all other investment strategies, it’s crucial to have a balanced portfolio.
I’ve found that to be a useful metaphor, actually. It goes back to something that we all understand in our daily lives, which is the importance of pursuing multiple options at the same time.
Even though the science couldn’t be more exciting and absolutely should be pursued, it needs to be combined with research that will allow us to… get effective treatment to the patients who are not getting it today.
And one of the appealing things about that is that it has the potential to yield health benefits immediately, as opposed to a long-term benefit which is where the exciting basic science is taking us.
Freeman: If you go back to 1971, President Richard Nixon declared a war against cancer… (He) believed that the war would be over in approximately eight years… He likened it to putting a man on the moon.
Well the problem of cancer, first of all, is that it’s much more complex. It’s not one disease; it’s more than 100 diseases…
Also,… the war… was fought as though it were only a research war… (We) put more money into the research community, which was great, but… (paid) no attention to funding access to care, for example. No attention. That got worse over this same period in many ways…
I think that war needs to be fought the way it was declared; it had some good outcomes with respect to research. But at the same time we need to fight a guerilla war in the neighborhoods of America where people live and too often die… We have to do things for real people who have real problems… At any given time we must apply what we know to all people irrespective of their ability to pay.
The approach to disparities certainly requires the biomedical community to do its part, (to) teach us how to understand how disparities are driven from a biomedical perspective. But it quickly gets outside of that, because people live in communities where they behave in different ways and they have different levels of access.
We have to shift the war into not only biomedical science solutions but also social science solutions as well as equity solutions that have to do with social justice, and even take it into the level of civil and human rights.
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