Lovell’s Food For Thought – The Congressionally mandate Center for Research on Minority Health
A Research Center Once Referred To As Camelot
Dr. Lovell Jones | 11/4/2015, midnight
Seeing the recent news release regarding the rise of the incidence of breast cancer in African American women took me back to the reasons why the Congressionally mandated Center for Research on Minority Health (CRMH) was created (http://well.blogs.nytimes.com/2015/10/29/a-grim-breast-cancer-milestone-for-black-women/?smid=fb-share&_r=1). As was recently said to me by a close colleague, “It certainly is frustrating and after reading the NY Times article you referred to, I really understood what you were saying even better. We seem to fight the same battles over and over with little or no success.” Why do we continue to have to reinvent the wheel?
I have been at the issue of equality for more than 50 years, with a focus of health equity for more than 30. As the same colleague said, “you have given so much over the years, so you won’t have to feel negligent in encouraging others to speak up!!! We won’t be around forever so we have to encourage others to take some of that leadership initiative, as frustrating as that might be.” That was one of the goals of the CRMH, to bring forth a new generation of researchers trained in a new approach to addressing health disparities, one that would involved a “biopsychosocial approach” that would truly involve more than just science, but “science that benefits the community.” It was an approach that came forth out of the 1st Biennial Symposium on Minorities & Cancer and documented in the first comprehensive book by the same time “Minorities & Cancer.” The interesting thing about the book is the things you see today were the things written over 25 years ago. I encourage you to go online and read it. The overview and some of the chapters can be found on this link, https://books.google.com/books?id=wYzbBwAAQBAJ&pg=PR7&lpg=PR7&dq=Minorities+%26+Cancer+book&source=bl&ots=kw0TVSyLa8&sig=qW1gNlPm0I9G6u5PuxZcEeEySIc&hl=en&sa=X&ved=0CF0Q6AEwBWoVChMI1Ouv1ZfyyAIVxvI-Ch1VFQKg#v=onepage&q=Minorities%20%26%20Cancer%20book&f=false. It is amazing to read what was written then and what is being written now.
Again, the more things change, the more they remain the same. We took all that was contained in the book and proposed the creation of a center to address health disparities in a holistic way. After almost a decade of failed attempts to get granting agencies to look at the issue such a manner, it was over a dinner table with then Congressman Ken Bentsen and his wife that there began to be light at the end of the tunnel. During dinner, as both Tamara Bentsen and I were being honored for our efforts by Sister’s Network, Tamara asked about how my efforts were going in changing the paradigm. I told then about the applications and that each time I was instructed to separate the grants into biological, sociological and psychological applications. That such defeated the idea of a “biopsychosocial approach.” From that discussion came a proposal to Congress to create a center of excellence for research on minority health based on a "biopsychosocial approach" with Houston as the target city. Ironically, it turned out that it was easier to convince Congressman Bentsen and Congress, than it was to convince NIH and even my own academic institution. The latter is a story in itself.
Two years later, with funds provided by Congress through the Centers for Disease Control and Prevention (CDC), we launched a minority research center. Part of the story indicated about was our initial stumbling block in getting the center named. When we proposed that the name be the Center of Excellence for Research on Minority Health, we were informed that the home institution was not too keen on that name because it had no other centers of excellence. Therefore, the compromise in naming the minority research center was the Congressionally mandate Center for Research on Minority Health – CRMH.
Ironically, at the same time we were funded an article in the New Year Times came out on breast cancer in African American women (http://www.nytimes.com/2000/02/22/health/breast-cancer-in-blacks-spurs-hunt-for-answers.html). It stated “At a time of unprecedented advances, when overall death rates from breast cancer are declining, black women are 12 percent less likely than white women to get breast cancer, but far more likely, once they contract the disease, to die from it.” Statements like this were the sparks that led to our first effort in September 2000 to sponsor the Summit Meeting Evaluating Research on Breast Cancer in African American Women. Again, as I have often say, the more things change the more they remain the same, given the recent New York Times article on the increase in then incidence of breast cancer in African American women. Just to reinforce this go back and read the 2000 New York Times article on Zora Brown and her family and the the 14 priority areas with 51 items that needed answers which came out the summit (http://www.ncbi.nlm.nih.gov/pubmed/12491483). As another colleague wrote to me, “I wonder if it’s time for another summit? Do you have any more energy?” The better question is whether the new generation has both the energy and the will? Maybe it’s time to revisit those 14 priority areas and really set a course to do something about the issue.
For me and the founding members of the CRMH the summit was the first of many accomplishments we were able to achieve over the year, and therefore set the standard for others to follow. As Martin Luther King once said, “The arc of the moral universe is long, but it bends towards justice.” The CRMH was just one leg of a journey that continues today.
The impact of the Congressionally mandated CRMH can be summarized in the follow statements provided by an NIH study section five years after it creation.
"One cannot help but imagine that this is exactly the model of a cutting edge health disparities center of excellence. It is hard to imagine that there is an aspect of body, mind, or culture that is not under consideration with the present investigator's holistic approach. The combination of the caliber and experience of the leadership team, along with the scope of activities and the level of collaboration, within and across institutions, makes this an outstanding application. The integration of the goals of Project EXPORT and the CRMH, which forms the basis of the present application, promises to make significant contributions to our understanding and treatment of cancer and other diseases in minority populations and the medically underserved.”
From 2002 to 2013, the efforts of the CRMH brought in from the cold, the “biopsychosocial approach” to health disparities that is now commonplace among many other centers across the nation. However sadly, as one of our external scientific advisory committee members said if forecasting the future, “you are truly ahead of your time and that maybe your greatest liability.” It truly was as it turned out a decade later. We addressed every problem that landed on our doorstep, because addressing health inequities became our passion and not our job. As was said by several members of the CRMH, “working there was more than a job. It was more than a career. We were truly a family that was making a difference. I am where I am today because of Dr. Jones and the CRMH family. Its the only place I've ever worked and look back and miss those days so much.” Again, such feelings were one of the unique factors that contributed to the success of the CRMH. It was America coming together for a single purpose, the betterment of those we all cared about. It was not a Black thing, or a Hispanic thing or an Asian American thing or an American Indian thing, or a poor white thing, but an American thing.
The accomplishments of the CRMH, which became the Dorothy I. Height Center for Health Equity & Evaluation Research (DHCHEER), are too numerous to list in this one op ed piece. As my mentor, Howard Bern, once said, "one’s legacy to science is not the work that you do, but the people you leave behind”. The CRMH/DHCHEER has truly exceeded in training and leaving behind the next generation.
But to those who helped to create the CRMH, as Margaret Meade once said, “never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.” Although the idea of a “biopsychosocial approach” grew out of the vision of one individual, it was the joint effort of a group of dedicated people who brought it the idea of a “biopsychosocial manner” that truly made the difference. This group of individuals truly demonstrated the relevant of Margaret Meade’s quote.
Growing out of the Experimental Gynecology Laboratory in the Department of Gynecologic Oncology and the staff of the National Black Leadership Initiative on Cancer (NBLIC), the creation of the CRMH brought together a group of diverse individuals who had never been brought together before. They were former students who had been trained in a biopsychosocial approach; those employed in the business world; those who had immigrated to this country, but skills had been under utilized; scientists who felt that they wanted to have more community involvement; a health lawyer who wanted to use her skills in a different way, a science teacher, a dental student who decided he wanted to do something different with his life; a social worker who also looking for a different way to apply herself to form a group whose unifying passion brought their skills together in addressing health inequities in a way never tried before. They came together to truly create a group ahead of its time.
There was Angelina Esparza whose career path was to becoming a nurse. Caren Blinka, who at one time was the top lawyer for the University of Texas MD Anderson Cancer Center, whose career path took her to become head of the CRMH’s patient navigation program and ultimately to be certified as a patient navigator herself. Dr. Richard Hajek who became the center’s director, and in his transformation from an environmental scientist, become the prototype of a Research Scientist. Dr. Janice Chilton who came from cancer prevention to becoming a bioethicist and develops the bioethics center that still exists at MD Anderson today. Sherry Wunsch who came from the business world as a cancer survivor who brought her organization skills to the center; to Isabel Estudillo who finished as class valedictorian who was never given the opportunity to truly advance, she became my right hand person; to Cheryl Downing, Son Hoang, Gayle Harper and Kelly Hodges who formed the community relations arm of the center; to James Heggie who served as Dr. Rod Paige’s right hand person who came to direct the Education Core along with Cynthia Clark ; to Anissa Lewis who was a secondary biology teacher who came and developed our PIPELINE K- 12 SCIENCE Project. Michelle Detry was a graduate student who came to become our biostatistician for the workshop and the course still remember Cynthia and ask about her. Then there was Dr. Maria Hernandez who developed our environmental project with Hispanic children and families; to Mia Hall and Danielle Banham who served as the dietician for NuLIFE, to Taylor Tran who was also a student who became the WHEL dietician; to Dr. Jan Liang who came from running a diagnostic lab to develop, along with Dr. Beverly Gor, our Asian American cancer prevention efforts; to LaSonya Knowles and Rocio Moguel who developed our data bases; to Maria Berglund who stated as a graduate student from Mexico, who became one of our other research dieticians; to Marcela Marlborough who became another center piece of the center, the Kellogg Health Scholars and CRMH Fellows, high school and college trainees, both the Community Advisory Board and those of the External Scientific Advisory Board and many others individuals I could go on and on, and I know I am leaving some out. If I have, I do apologize, for your contributions were no less important than those listed. The guiding factor was to try and cover those individuals from the initials days. However, I tried to include as many of you as I could in the composite picture that accompanies this op ed piece.
In fact, I could expand on the space covered in listing all of the many more jobs those listed than could possibility be chronicled. Remember, it was not a job, but a passion expanded past job titles. As the center grew over the decade, these individuals were joined by the many more people. So many so that if I start to list, the list of names would be numerous. Again I know I am probably leaving someone out, but be assured that your contributions were just as valued by me. Again, as Margaret Meade once said, “never believe that a few caring people can't change the world. For, indeed, that's all who ever have.” Although, after my retirement the center was dismantled and no longer exists, what these individuals accomplished as a unit continues to this day.
So no longer in existence, the Congressionally mandate Center for Research on Minority Health (CRMH) still stands as “exactly the model of a cutting edge health disparities center of excellence in all aspects of body, mind, or culture that is not under consideration in its holistic approach.” It truly demonstrated that it was the type of model that is needed to make significant contributions to the understanding and treatment of cancer and other diseases in minority populations and the medically underserved. Live long and prosper CRMH Alumni, the world is still in need of your services.