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FARAI CHIDEYA, host:

From NPR News, this is NEWS & NOTES. I'm Farai Chideya.

October is Breast Cancer Awareness Month. The good news: cancer rates for women are down, including from breast cancer. The bad news: African-American women are still 30 percent more likely to die of breast cancer than white women. It's part of a trend. In general, African-Americans are more likely to die from most cancers than any other race.

This week, however, experts gathered for the first ever National Conference on African-Americans and Cancer. We've got two of the conference participants with us. Mary Hess is the founder and president of Minority Health Care Communications, and Dr. Natalie Joseph is an oncologist with Fox Chase Cancer Center in Philadelphia. Welcome to you both.

Ms. MARY HESS (Founder, President and Director, Minority Health Care Communications Inc.): Thank you.

Dr. NATALIE JOSEPH (Surgical Oncologist, Fox Chase Center, Philadelphia): Thank you very much.

CHIDEYA: So, Dr. Joseph, what about the drop in cancer deaths? What's the cause of that?

Dr. JOSEPH: Well, I think some of that has to do with more coordinated treatment. For many cancers these days, there are teams of physicians, including surgeons, radiation doctors and medical oncologists, who really come together in a more of a collaborative approach to individual patients. Also, we've had - seen great increases - or actually improvements I should say, in some of the chemotherapeutic agents that have been used, some of the surgical techniques, and I think all of those things together have certainly improved both our ability to treat cancer and, subsequently, their outcomes as well.

CHIDEYA: Your specialties are colorectal cancer, breast cancer - those are the biggest drop-offs. What do you think is the reason that there was some ability to really help people and make sure that they stay cancer free?

Dr. JOSEPH: Well, I think there have been huge screening efforts in both of those cancers - with mammography and some of the guidelines - with mammography, we're seeing a greater number of women whose diagnosis is made at a very early stage - at a stage where their cancer is very curable. And we're seeing the same thing in colorectal cancer as well. With efforts to push colonoscopy and early intervention, again, we're able to get cancers in an earliest stage where they can be cured.

I think, also, there've been improvements and more standardization in surgical techniques. In colorectal cancer - actually, the first time in probably in the last 5 to 10 years, we've had some significant improvements in some of the chemotherapeutic agents that are used in treating that cancer which have really afforded significant improvements in survival; even for those patients who have metastatic disease we're seeing longer survival because of that. So I think there have also been…

CHIDEYA: So when you say metastatic - sorry to interrupt you - you're talking about cancer that spread from where it started to other parts of the body.

Dr. JOSEPH: Exactly. So once those - that percentage of patients who present to us with cancer that has already spread, we're even seen a longer survival with those patients as well because of that. There've also been some - there's been a push towards using more targeted agents so agents that are - chemotherapy agents that are very specific in that they target certain receptiors, and we're seeing that in both colon cancer and breast cancer. So I think it's really kind of a combination of many things that's leading to this improvement.

CHIDEYA: Mary, let me talk to you. You are dealing with reaching out to the community, and one of the things that Dr. Joseph was talking about was better screening. How does what you do impact people's health, and what exactly is your strategy?

Ms. HESS: Well, the National Conference on African-Americans and Cancer was founded on the premise that we have made great strides in therapeutics. You've heard Dr. Joseph talk about better results. The diagnostic techniques are much improved. We are able to impact people, you know, at a point where, in their disease, what they have, the cancer it's - earlier, it's easier to get to.

But on the other end of it, we have people that are, especially among African-Americans, women that, while there are incidents of breast cancer, for example, isn't as high as any other racial types. These women are still more likely to die. In fact, they're 30 percent more likely to die.

And so there's such a big disparity, and we think that someone - what comes into play is that there is a lack of access to care, and so the reason the conference was founded, well, the primary reasons was we saw the improvements. Everybody else, in effect, you know, there are improvements in the African-American population but in terms of getting to that magical five-year survival point where people are considered, you know, widely considered cured of their cancer, African-Americans are less likely to get to that point. And overall, they tend to have come into the care process. They engage with their doctor at a later point in their disease so that - again, we have a lot of catching up to do but there's a lot to be gained.

CHIDEYA: Take this to a more personally level, when you think about what this issue means in terms of, for example, people not living as long once they're diagnosed in the African-American community. What does that mean to women? What does that mean to families?

Ms. HESS: Well, for families, gosh, there's so many ways that cancer or any serious illness negatively impacts a family. For example, in the African-American community women play such a pivotal role there. They're the primary caregivers, they're often can be people that are taking in their elderly relatives, they may be taking care of a sister, they may have so many more responsibilities, many times they're also working outside of the house. So if you're a primary caregiver - the mother, for example, has breast cancer, then that's going to have an immediate impact on productivity on the mother's part. She's going to be sick, she's going to be going through a lot of debilitating therapy, a lot of medicine should be taken.

There's also the cost of the medication and the other care that goes around it, you know, when someone goes to get their cancer therapy, to take their cancer medicine, they don't just go and get the medicine and then they come back home, they have to take other medicine to relieve the side effects. So the cost of the therapy is not just about medicine, it's also about a lack of productivity and medications that are used to relieve things like nausea. People are sick and they also may not be able to take care of the children and so it's quite devastating.

CHIDEYA: So, Dr. Joseph, you are a surgical oncologist, you've have to deal with, I'm sure, some very severe cases. When you think about some of the patients that you've treated, as well as the research that you do, what stands out in your mind about what you can bring to individual women and to families?

Dr. JOSEPH: Well, I think that - well, clearly, one of the first things we can offer is hope. I think one of the things that many times can be overwhelming to any patient, and particularly what we see kind of in the African-American community, is that a cancer diagnosis is very overwhelming, and, for many people they think of it as being a death sentence. But certainly, I think given, as they said, the diagnostic techniques that we have, surgical techniques such as the ones that I perform, and also the, you know, the other disciplines that offer, you know, other components of their treatment, I think that many of those patients, even though it may be kind of hard road to go through, can end up with a very good outcome. And so what we like to push for them is this isn't the end. There are certainly good treatments to offer you. It doesn't mean that, you know, you're not going to live to see, you know, your children or the rest of your family. And in fact, for those patients that were able to get in early, they have a very good chance of a good outcome. So I think we're really trying to push that for them.

CHIDEYA: Now, Mary, I understand that you're doing a call to action for the African-American community. Tell me about that.

Ms. HESS: Well, it's two parts. First of all, what happened during the conference on African-Americans for Cancer we had are audience that was very professional and also a very engaged audience. And I think, for a lot of people, there - it was a revelation that they were able to really network in a firm, but it's a very difficult work. I mean, if you're a cancer nurse, a cancer physician, a case worker, a social worker, you know, it takes a lot out of you to encounter people who are in pain, who, sadly, may not succeed in their fight against cancer. You engage with a lot of the damage. You know, those left behind, you have children that are going through a very tough time watching mommy or daddy, or you may also see the parents struggle with the child's sickness.

So it does take a toll on you. And even professionally, you need to have that support. And I think one thing this conference did accomplish was that we are hoping that these folks who came and joined hands and sat next to each other for two days and listened to this information in the same room, also began to begin to form a network.

So one of the goals was to get a network of concerned providers together and with the goal of the Call to Action - the Call to Action is really two pieces. One is the letter to President Bush. And we haven't finished the letter, we want to include all of the faculty who were present at the conference. So what we're doing right now is we have a basic letter, and we're actually getting input from all our faculty who represent many main disciplines, and we're going to forward that onward.

And then secondly, we have a set of guidelines that we're working on a white paper, you could call it. And the guidelines are not treatment guidelines because, after all, the treatment for cancer is individualized and that really would rest between the provider and discuss it with the patient. But these guidelines are for services and support. And that's one of the biggest things that we see that's empty right now. And in the…

CHIDEYA: Mary, let me just jump in. When you talk about services and support, one of the issues on the table is wealth and poverty. And in many cases, people who are diagnosed later, people who don't have a lot of economic resources, how do you deal with all these broader issues for people who may not even have regular access to health care?

Ms. HESS: You have - you point out an excellent point. In fact, Harold Freeman, one of our speakers, said that poverty is the one - one of the number one reasons that there remains a disparity between African-Americans and their health care and other racial types. So going on that, yes, there are several things that could be done.

And there's a model that we can look in terms of an example, which would be the HIV movement. We had HIV activists 25 years ago lobby in and create Ryan White, which is a funding sources - kind of by the federal government and Ryan White covers different types of needs that the patients have. For example, medication needs, also housing needs, also can even include child care, elder care. It can include transportation, nutritional counseling. And it's - it works very, very well, and it's refunded every year.

This was really put in place in the case of the HIV epidemic, it was put in place as emergency measure because of the severity and the widespread nature of the HIV epidemic at that time. And it's been refunded every single year. It would be a possible model to use to alleviate some of the worst situations among the cancer epidemic, not jus in the African-American community, but all across the United States possibly. This could be modeled and after Ryan White, the CARE Act. So that is a possibility.

CHIDEYA: So it sounds like you're really talking about fundamental push to really put this agenda up higher.

Ms. HESS: That's correct. I mean, the whole reason why we launched the conference was to really begin - not just getting the primary care physicians involved, which of course, you know, we certainly want to have that. The continuity of care, the communication can really use enhancement between the oncology community and primary care. There's a lot of opportunity to enhance that. So…

CHIDEYA: Mary, we're going to have to end it here. Thank you both so much. We've been speaking with Mary Hess, the founder and president of Minority Health Care Communications, and Dr. Natalie Joseph, an oncologist with Fox Chase Cancer Center in Philadelphia. They joined us from the center's studios.

Coming up ahead, our civil rights series continues with struggles in Africa, Haiti and South America.

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