Until we've done studies…with regards to the role of biology, social issues, or other factors, then really no one can stand on solid ground and say…’all we need to do is address the access issue.’ You really don't know until you do the study.

As veteran researcher Lovell A. Jones, Ph.D. prepared to launch a large study of lifestyle and breast cancer among African-American women, we asked him why several cancers seem to strike black Americans more often than whites. And why the cancer death rate for African Americans is 33% higher than for whites

Jones's answers were keenly perceptive and always scientific. He assumes nothing and wants to examine everything -- people's health habits, the lack of survivors who will share their stories, and people's diverse beliefs. He recognizes limited access to medical care as a well know problem, but wants to know if genes passed on from parents or a cultural bias in research and medical care are also to blame.

Q: Why do you think African Americans have a higher mortality rate from breast cancer than other Americans or minorities?

A: The emphasis has been that African-American women have delayed access to treatment, and therefore show up with more advanced disease. About two years ago we held a summit to look at the issue of breast cancer in African-American women. We brought in researchers and social scientists to address the issue.

The bottom line that came out of the meeting was that we have made a lot of presumptions for which we really have no scientific basis. We have very little knowledge about the role of genetics in this disease—although there is some indication that genetics does play a role. We have very little knowledge about the biology of the disease and we have made a lot of assumptions based on data that was generated in terms of white females. That may not hold true for African American women and other women of color.

Q: What would you tell African Americans to encourage them to participate in clinical trials of new treatments or lifestyle studies?

A: We don’t have enough information on African Americans. There are differences that we need to know about so that we can better be able to address their particular disorders. [We know] that pre-menopausal African-American women have one of the highest incidences (of breast cancer)…. So if African-American women don’t participate, we don't know (what causes their cancers), and that may lead to the continuing disproportionate ill health effects that are falling on African Americans.

Q: Do you think denial, lack of awareness, and distrust play a big part in health care avoidance with African Americans? What can be done?

A: Yes . . . . I would say perception is reality to the person who perceives it. I think there is still an underlying fear and a lack of trust of the system because of the idea that even when you're in the system you get stereotyped or profiled. For instance, minority health issues are not the same as indigent (poverty) health issues. If you treat a minority patient as though he/she were indigent (poor), it can have an impact on how you treat the patient and the recommendations you make. The patient may sense this and feel that you are not providing the same care as you provided another, non-indigent patient. If you are working within in a clinical trial, the patient may begin to question their participation in the clinical trial. This message is taken back to the family members and the community

Q: Do you think African Americans would participate in clinical trials if they were to see African-American doctors conducting the studies?

A: Yes, they would, but I also think all physicians who are involved in clinical trials should realize there is a need to change how they approach minorities for clinical trials. They need to bring in some minorities on their staff who are in leadership roles—not just one token representative. Most clinical studies hire a recruiter to recruit patients for that particular population, but the rest of their staff hasn’t changed. So the community sees an African American, Hispanic American, or Asian American out there recruiting, then they go into the clinic and wonder -- what happened? It’s like putting a band-aid over a heart attack, hoping it will have an impact.

Q: How can health educators change the “what I don't know, won't hurt me” mentality in African Americans?

A: By beginning to see that there are survivors. The vast majority of African Americans don't know someone who has survived cancer. But there may be a survivor sitting right next to them. A number of years ago, I was invited by a church minister to talk to the men of the congregation about prostate cancer. After I was finished, the minister turned to me and he said he was a patient at M.D. Anderson. He said the doctors thought he had prostate cancer, but because he was alive today, he probably didn’t. I went back and looked at his records, and he did have prostate cancer. But his perception was “I'm alive, so it must have been something else.”

African-American leaders, or any leaders, are no different from the population they serve. They have the same fears about discussing issues. We had a city council member in Houston who was almost on his deathbed before he admitted that he had cancer. It was said that he didn't want people to vote him out of office. He never told them. So when he did die from the disease, it had a negative impact. People said that he was well the other day, but he walked into M.D. Anderson and never walked out.

Q: Are African-American women more receptive to screening than African-American men?

A: In general I think the women are more receptive simply because they are considered to be the stable force within a family. Although I think they probably seek care less frequently than white women do. I think that goes back to the lack of trust in the system itself. With men, whether they are African American, Caucasian, or other, they tend to put off seeing about their medical needs until they are forced to.

Q: What can be done to make African Americans feel more comfortable about the advice they receive?

A: In the way it's delivered to them. We have to realize that we are dealing with different cultures. One thing we are doing is to create a program in health disparities that would be open to not only physicians in training, but also for persons interested in health—i.e., lawyers, psychologists, sociologists, etc. The program would give them an overview of the different areas of health disparities from an economic, social, and biologic point of view so that they will be prepared to address this new society in terms of the cultural diversity that exists.

Q: How can we reach those individuals who can't read, who don't see their doctors regularly, who don't seek advice when something is wrong, or who may be in denial?

A: I think we can address each of these individuals, with the exception of the homeless, from a family connection—because there is someone in their family who interacts with them. If we are able to touch on those individuals, the message will then filter down to those who can't read. Although I think literacy is a problem, and we need to address literacy, we can't wait until that issue is solved in total. We have to begin to use family networking to reach those individuals.

Q: What can the American Cancer Society do to get more African Americans to be screened for cancer?

A: You have to couple screening with treatment. You can't screen someone, tell them they have a disease, and then say, ‘you're on your own.’ They may delay seeking care because they don't know how to enter the system and/or they may not think they that have the disease because they don't feel anything. At some point in time a system is going to have to be set up. In other studies that I have done, I have been able to find a way to provide services for the individuals who need those services.

Lovell A. Jones, Ph.D. directs the Center for Research on Minority Health at the University of Texas, M.D. Anderson Cancer Center in Houston. Dr. Jones is presently a Professor in the Departments of Gynecologic Oncology and Biochemistry & Molecular Biology at the University of Texas M.D. Anderson Cancer Center (UTMDACC).

In 2001, the American Cancer Society awarded a grant for over $1.7 million to Professor Jones. He plans to study diet and lifestyle changes that may help reduce the risk of developing breast cancer for African-American women ages 25-45.