Chapter 14: The National Black Leadership Initiative on Cancer: Developing Grassroots Action for Health Equity
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Description
Here Dr. Jones tells the story of The National Black Leadership Initiative on Cancer. He defines "health disparities and health equity" (using the World Health Organization's definition). He then tells the story of helping to start the National Black Leadership Initiative on Cancer after the publication of a report on minority cancer. He explains the scope of the Initiative's activities (and notes MD Anderson's lack of support and criticisms). Dr. Jones tells anecdotes about his stressful relationship with MD Anderson that made him consider leaving Houston.
Identifier
JonesLA_03_20140130_C14
Publication Date
1-30-2014
Publisher
The Making Cancer History® Voices Oral History Collection, The University of Texas MD Anderson Cancer Center
City
Houston, Texas
Interview Session
Lovell A. Jones, PhD, Oral History Interview, January 30, 2014
Topics Covered
The University of Texas MD Anderson Cancer Center - Diversity Issues; Definitions, Explanations, Translations; Beyond the Institution; Experiences re: Gender, Race, Ethnicity; Gender, Race, Ethnicity, Religion; MD Anderson Snapshot; Professional Practice; Understanding the Institution; The Institution and Finances
Transcript
Tacey Ann Rosolowski, PhD:
We talked a little before the recorder was on and I was mentioning that I was hoping you could-since we're talking about general issues, I thought maybe we could continue a bit with that. Just give a global sense of what the situation is with health disparities in the nation, in Houston. I mean, I know that you define health disparity in maybe a not so obvious way, so maybe we could start with that definition and then kind of go to where how you see that playing out both at the national level and in Houston.
Lovell A. Jones, PhD:
Well, I've started to take the World Health view of health disparities or health equity-and I think "health equity" is probably a better term, because it's moving towards the positive as opposed to highlighting a negative-that health equity is not just the absence of disease. It's more it has to do with the person's well-being, both physically, mentally, and spiritual. I think that's what we should be striving for. I think because we pigeonhole it and people talk about, "Well, we need to address the issue of access, and if we solve access, then that will solve the problem," it hasn't solved it. I haven't seen it solve the problem. Or that if we solve the issue of triple-negative in African Americans in terms of biological problems, that we'll solve the issue. You know, I don't see that happening. Or if we solve it in the physical environment in terms of housing and education, maybe, and maybe those will do a little bit better, but I think we have to do it in all arenas in all [unclear] that we'd look at it in a broad sense as opposed to a very narrow sense. When I started the National-or helped start, actually, the National Black Leadership Initiative on Cancer, it came out of in 1985, the National Cancer Institute released a report on the state of health, primarily cancer, in African Americans and other minorities, which was a follow-up from the Heckler Report on the health of minorities, primarily African American, to some extent Hispanics and others-and as Howard Cole said yesterday, he hated being "other"-that there was a need to attract attention to this issue and to move forward with it.
Tacey Ann Rosolowski, PhD:
I'm sorry. I missed the name when you said when you had helped start a particular organization. I missed the name.
Lovell A. Jones, PhD:
The National Black Leadership Initiative on Cancer. I was asked-what happened was in 1987 was the launching of the Biennial Symposium on Minorities and Cancer, and it was the first time ACS, NCI, and Komen all had supported a meeting together, the leadership, they'd all come together. And it was a meeting that people said couldn't happen, because I said I was going to have a meeting for all Americans. They said, "You're going to have it for physicians." "No. All Americans, because that's where the problem is." That rippled to Lou Sullivan, who had the ear of a number of individuals in senior-level government, including Barbara Bush and George Bush, and got NCI to hold regional meetings around the country. And he asked his fraternity brothers, who he selected-
Tacey Ann Rosolowski, PhD:
That works.
Lovell A. Jones, PhD:
-who all had graduated from Morehouse or had some relationship with Morehouse, to lead the efforts. Most of them were academicians, with the exception of the person here in Houston, Dezra White, and Dezra had the wherewithal to seek me out. He says, "I don't have an institution. I'm an everyday practicing physician. I don't do these sorts of things, but I was asked to do it, and would you help me? Would you become my co-chair in terms of helping do this meeting, since you did the biennial?" And I said, "Yes." And he said, "I have a friend, Pamela Jackson, who I would like to work with us." And what I didn't realize at the time was that Pam was Dorothy Height's niece. So we held the meeting, we held the meetings around the country, and then we all went to meet with Al Rabson, who was the interim director of the National Cancer Institute, and we gave him a summation of what took place and what we wanted to move forward with, and Al basically said, "Thank you for the report, and we'll take it under advisement," and so forth and so on. And I'll never forget, Clyde Philips [phonetic], physician neurologist in Chicago, got up and said, "That's unacceptable. I can't go back to Chicago, to South Chicago, and tell the people you are taking the report under advisement. That's not going to cut it." And he said, "We need to do something more, and I'm not leaving your office, and I hope my friends here will not leave your office, until we come up with a plan of action." And that took Al by surprise, but to his credit, he listened, and we were able to design and get funds, route it through the Drew/Meharry/Morehouse Cancer Consortium, which was a consortium that was created to address the issue of cancer in black Americans. There had only been one other Cancer Center at the time, and that was Howard University Cancer Center in Washington. But there was no other funded Cancer Center in America to look at the issue of cancer in blacks that had been so highlighted in, first, the Heckler Report and then the report that was produced by Claudia Baquet as a fellow when she was at NCI. So that is what led to the National Black Leadership Initiative on Cancer that led to all the other leadership initiatives that led to the Special Populations Branch that was created at NCI, that now has led to the Center for Health Disparities Research that is at NCI. But I was joking with some-well, actually, we were talking at this meeting, and I was saying to a young African American physician there, I said, "But interesting, nobody knows that history. And today there's no National Black Leadership Initiative on Cancer. There's no remnant of it."
Tacey Ann Rosolowski, PhD:
When did it fold?
Lovell A. Jones, PhD:
It folded in- let's see. 2009. I think it's 2009.
Tacey Ann Rosolowski, PhD:
And why was that?
Lovell A. Jones, PhD:
Because NCI failed to fund it. It got an excellent score. It was not in the funding range, and so it was not funded. But there are still the remnants of the National Black Leadership Initiative on Cancer, the National Appalachian Leadership Initiative on Cancer, the National Asian American Leadership Initiative on Cancer, the National Native American Leadership Initiative on Cancer, those are still functioning, but the one focused in the original is no longer in existence. So that goes back to the issue of value. And some people say you're stretching it by saying it also goes back to the issue of slavery and the dehumanization of a population, in terms of because if you don't value a population, then you don't make efforts to say, "What? You mean we don't have this? We've got to do something. Maybe we give them a year extension to come back in and see what happens or something." But no. We met with them. I met with them. I was co-principal investigator, and it was interesting that I approached Anderson about-and it was political, a political decision; I know how it was made-about submitting the application for management, because the original, as one of the original sites, and the decision was to submit one on Hispanics. You couldn't submit two applications. And I said, "I can understand what our history is with African Americans. We have a long track record in terms of having that. This is something new. Maybe we could look at other options, but it would seem to me-." And so to submit it, we partnered with Tulane, which didn't have a history with [unclear], and I think that was part of the issue, that even though we got an excellent score, I think if it had come out of the original base, then there would have been no-or maybe not. But today, in reality, it doesn't exist. There is very little mention of it in NCI and very little mention of the six individuals that were the basis in moving it forward. Now, some of us still-Harold Freeman was one of them, and so we kind of joke and say we're kind of the forgotten group within that. So that National Black Leadership Initiative on Cancer really led to the foundation for development of the Intercultural Cancer Council, because our region for the Leadership Initiative went all the way to North and South Dakota, so we were thinking about, okay, North Dakota and South Dakota and African Americans. Hmm. And we said, "If they have military bases, they probably are going to have them there," and that's where we went.
Tacey Ann Rosolowski, PhD:
Oh, interesting.
Lovell A. Jones, PhD:
But when we talked to the health departments, they said, "Well, you know, our main underserved population is Native American." We said, "Oh, we'll make them honorary African Americans and we'll pull them into the group (laughter), and so you can use all this stuff we're doing with that population." So those contacts and that sort of thing actually led to the foundation for the Intercultural Cancer Council, because it gave us the support, really, to move forward. So the biennial and the National Black Leadership Initiative together kind of gave rise to the Intercultural, which is still in existence.
Tacey Ann Rosolowski, PhD:
We kind of-I mean, I have the framework in mind of the National Black Leadership Initiative on Cancer. What was that first meeting like, and what do you feel was accomplished as a result of it?
Lovell A. Jones, PhD:
Well, the meetings were held in New York, Washington, D.C., Atlanta, Houston, and Los Angeles and Chicago. Those were the six meetings. And it was the first effort by the National Cancer Institute to address community needs, and so it was probably the first efforts in community-based participatory research of anything that had come out of NCI, and it was to develop relationships with grassroots organizations to get them engaged and to form a network or conduit for exchange both between NCI and those groups.
Tacey Ann Rosolowski, PhD:
So this was a new way of thinking for NCI.
Lovell A. Jones, PhD:
This was a new way of thinking, yeah.
Tacey Ann Rosolowski, PhD:
And why was the time right at that point for NCI to be thinking in this new way?
Lovell A. Jones, PhD:
Well, I think a lot of it came out of the Biennial, because the leadership came down to the biennial and had been kind of negative in terms of how it would work. But to see community people, see policymakers, see researchers, see just the broad fabric of America really interact and successfully interact and exchange ideas and see the momentum coming out of that, I think they carried it back. And then it was a time that Lou Sullivan was being groomed to be Secretary of Health and Human Services and having the ear of George and Barbara Bush, having them-have Barbara Bush actually serve on the Board of Trustees for Morehouse, and then having this cohort of Morehouse graduates that really were in influential positions: LaSalle Leffall, who was the first African American president of American Cancer Society, who was in charge of the Mid-Atlantic Region out of Howard; to have Harold Freeman, who was an up-and-coming star in the American Cancer Society, who ended up being its president in '89, '90, be head of the Northeast constituency; Lou to be head of it in Atlanta before he went into the government thing; and then have Reed Tuxin [phonetic] who had been the head of D.C.'s Health Department now was at Charles Drew; and M. Alfred Hanes [phonetic], who had been one of the movers and shakers in getting the Drew/Meharry/Morehouse Cancer Consortium moving forward. To have all these in one place at one time working together, I think was, for lack of a better term, a perfect storm that moved this forward. And then to have Anderson kind of forced into it. (laughs) Because when we were getting the funds for the NBLIC, I lobbied-educated-for the office for the region to be at MD Anderson, and actually the office for the first two years was not at MD Anderson. It had the MD Anderson name on it, but Anderson refused to provide any space for it. So it was-oh, I'm trying to think of Judy's last name. She was at the time vice president for academic affairs over at University of Texas Health Science Center and she was a dean of Allied Health. So she provided us with an office, so we had an office over in 7000 [unclear]. So it was interesting because Anderson was getting the indirects [unclear] space, [unclear] space. But how we ended up with the indirects was Jim Bowen also-I have to mention him-who was a vice president here who was instrumental in keeping me here, because I resigned within the first six months I was here.
Tacey Ann Rosolowski, PhD:
Really?
Lovell A. Jones, PhD:
Ripped up my contract and was ready to head back to California.
Tacey Ann Rosolowski, PhD:
What was the precipitating event for that?
Lovell A. Jones, PhD:
They had made certain promises in terms of support and funding and were not coming through on that once I got here. And I'll never forget the day I went up to Jim's office and I said, "I'm getting the hell outta here. My Aunt Maisie [phonetic] was right. (laughs) This is just not going to work, and I'm gonna go home." It was coupled with the situation that was taking place with my oldest, with my son, in that I went to his school because he was having difficulty, and found out he was sitting in the back row, and the teacher was like, "Well, you know, he was aggressive," and blah, blah, blah, [unclear]. And I'm going, "Are you talking about my son?" And, you know, how he was having difficulty. And I said, "Let me tell you my son's scores on his academic tests. I don't know where this is coming from." And I said, "Troy, we're leaving," and I pulled him out. And I called up Reagan, who was the school superintendent here at the time, Billy Reagan, because I had his phone number, and I said, "I need to put my son in another school." I said, "This is not going to work." And we had looked at schools, and Lockwood [phonetic] Elementary was starting a kind of regional program, and I said, "That's probably something that he would fit into." And then they got into telling about the Singleton Ratio and the number of blacks and this, that, and the other. I said, "We'll have to move my son." And he said, "Well, we have to do this, that, and the other." I said, "Fine. I'll just take my family. We'll all go back to California." And I went up to Jim Bowen's office and I sat there and I had my contract, and I ripped it up and threw it at him and said, "I'm getting the hell outta here." And he asked me what was wrong, and I told him, "You know, you're not honoring my agreements, plus I'm having issues with my son and the family, and this is just not working out." I said, "I knew Houston as a kid, and it really hasn't changed a lot, and this is just not for us." So he picked up the phone and he called Billy Reagan, and he said, "We need to keep this guy. I don't care if it's one in that school." (laughs) So Reagan called me up at home and said, "Dr. Jones, we're going to make an exception," and blah, blah, blah. "Would you please go back and talk to Dr. Bowen? He's called me up, and they're sincere." So I came back to talk to Jim, and he says, "If you go down to your lab, you're going to see stuff that you were supposed to have gotten two or three months ago. There are orders and they're coming in. I'm sorry that this happened, but you know how the institution is. It's slow." And I said, "I understand." I said, "I'll give it another go." But Jim, when we got the grant, two things, two [unclear] events happening subsequently with him. First was when we applied for the funding, it came with no indirect costs, and so Jim called up NCI. I don't know who he talked to at NCI, but he relayed his discussion with them, and he said, "I asked them was this a block grant or was this just an NCI grant? because if it was just a block grant, I can understand not giving indirects." And he said the person on the other end of the phone said, "˜Well, we don't give block grants. We give inside grants.'" And Jim said, "Well, I expect my indirects then." (laughs)
Tacey Ann Rosolowski, PhD:
When you say "indirects," what do you mean?
Lovell A. Jones, PhD:
Well, like Anderson's indirects right now, that means you get additional money. You may get a grant for $100,000, but you get 60 percent to operate that grant. So you get an additional 60,000, sort of thing. So that was the additional money that comes to do the lights, support Office of Research, those sorts of things, administrative support and that sort of thing. But it meant that all the other institutions got indirect costs, and so became the kind of the golden child for NBLIC. So anything that they thought was not being done equitably, they would call me up and they'd say, "You let them know, and we'll-." So I think that made us [unclear]'s bad boy within NCI, because they thought they could do it with this amount of money, and they had to put some amount of money into it, which was what they should have thought about in the first place. So we actually set the standards for this office. The South Region set the standards, Pam Jackson and Janice Jolton, who were the two staff. That really sent the-because we were a Cancer Center, and we knew all the ins and outs and all the other entities, with the exception of Drew/Meharry/Morehouse, but they were a fledgling consortium. And Howard was a Cancer Center, but it wasn't at the level, and still is not at the level, in terms of the resources and that sort of thing. So we knew what was needed and how to approach it, and so we put it together and shipped it out to all the other regions. And interesting enough, all of the other leadership initiatives took that pattern, in terms of developing where they are today.
Tacey Ann Rosolowski, PhD:
So tell me about that pattern and what was accomplished, what you did here at Anderson with that initiative over the course of years.
Lovell A. Jones, PhD:
What we did was we developed resources, we developed a book of resources, what was out there that communities could utilize. We helped develop chapters across the regions. In Dallas, that was NBLIC. In Tyler, Texas, NBLIC. In Denver, Colorado, there was NBLIC. Albuquerque, there was NBLIC. That pulled on a local level the different groups that we were trying to pull together on a national level and so that they could address their local needs as opposed to having a national come down and tell them what's doing. So there are remnants of those local efforts that are still going in Albuquerque and in Tyler, Texas. I was there and gave a talk about a year and a half ago, and the group showed up. They still call themselves NBLIC. And if you go across the nation in some of the major metropolitan areas and talk to some of the community leaders, they will recognize and identify with that sort of effort. And they may have morphed in something else, but their original ideas of that kind of networking coming together in a broad sense of different health entities coming together to focus on health, not only cancer, but other health issues, focus on nontraditional health areas like housing and transportation and that sort of thing, which also have a bearing on one's health. So that kind of model that you see today in terms of community-based participatory research, a lot of its evolution came out of the National Black Leadership Initiative on Cancer, and that came out of talking to those regional meetings. I went around the country to talk to community groups who had formulated these ideas and were doing it in the local group, but had no way of getting it out to be replicated over a national basis.
Tacey Ann Rosolowski, PhD:
So you not only helped provide patterns for this but also studied the effects? Is that-
Lovell A. Jones, PhD:
Right.
Tacey Ann Rosolowski, PhD:
So tell me more about that.
Lovell A. Jones, PhD:
Well, it led to, I would say, community-based organizations really realizing that they, too, had the power to write grants, to really influence their communities, and that's, like I said, the evolution into the Intercultural Cancer Council, learned that we have more power as a group than as individuals moving forward separately, and there is power in speaking with one voice. And, in fact, that's the moniker of the ICC, which I've seen other people pick up. We have the registered mark for it, and we haven't pushed it, saying nobody else can use it.
Tacey Ann Rosolowski, PhD:
It would be kind of ironic anyways. (laughs)
Lovell A. Jones, PhD:
Yeah. But I think that's overall-and I think the one thing that we got dinged on a lot, that I've seen and that the community-what do they call them now? Community Network Partnerships or Community Partner Networks. They have a new term at NCI for this. They move from Leadership Initiative all the way down to Community Partner Networks or something. CNP, yeah, Community Networks. CNPs, okay. And, interesting enough, the CNPs don't know what the link is to the Leadership Initiatives, the LIs, on the other end. But I try to educate people when I'm around, say, "You know where this came from?" But we got dinged because we didn't do a lot of basic and clinical research at the time, but the membership in the group that we focused on were community individuals, and that wasn't the goal. The goal was to really begin to foster this network, and at some point in time, it would evolve into this in terms of moving forward. And it has to some extent, but I think the pendulum has swung too far to the clinical and basic research end of it, as opposed to the community end of it. But it's generating a lot of papers, and so that makes people happy. But I don't think it's having the necessary impact.
Tacey Ann Rosolowski, PhD:
As the discovery delivery disconnect.
Lovell A. Jones, PhD:
Right. That's taking place. And maybe the pendulum will swing back in balance, but I don't see it as we move to personalized medicine and all of this effort going in that direction.
Recommended Citation
Jones, Lovell A. PhD and Rosolowski, Tacey A. PhD, "Chapter 14: The National Black Leadership Initiative on Cancer: Developing Grassroots Action for Health Equity" (2014). Interview Chapters. 610.
https://openworks.mdanderson.org/mchv_interviewchapters/610
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