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THE MIAMI HERALD
Reaching Out To Hispanics
By CHRISTINE MORRIS
September 13, 2001
Hispanics, the nation's largest minority group, make up an unacceptably small fraction of those who participate in clinical trials of new drugs and medical treatments -- a trend the federal government is trying to reverse.
At the root of the problem is lack of awareness and, in much of the country, lack of access to health care, doctors say. Now, a nationwide initiative of the National Cancer Institute, with a regional center at the University of Miami, is trying to change that with public service campaigns, research targeted at Hispanics and training for Hispanic students and researchers.
``Hispanics' involvement in these trials is important as there are differences between Hispanics and non-Hispanics in terms of income, education, cancer risks and cancer occurrence,'' said Dr. Edward Trapido, a cancer control expert at UM's Sylvester Comprehensive Cancer Center. Trapido directs the southeast center of Networks in Action (Redes en Acción): Cancer Training, Research and Awareness.
Just as South Florida's Hispanic population differs markedly from that of the rest of the country, so does its record in some medical trials. Nationwide only about 6 percent of participants in National Cancer Institute trials are Hispanic, but at NCI's South Florida site, Mount Sinai Medical Center, the number is 17 percent.
``We are the only ones who are an absolute exception to the rule,'' said Dr. Enrique Davila, co-director of Mount Sinai Comprehensive Cancer Center. ``When I am asked why I am so successful at doing that, I'm not sure I can give an adequate answer. It has more to do with socioeconomic status than with any ethnic factors.''
South Florida Hispanics, in general, are better off economically than Hispanics in the rest of the country. In other areas, ``access becomes a huge issue,'' Davila said, using the example of a single mother with children at home, living far from a medical center conducting a drug trial. Transportation for the weekly visits required by the trial may be an overwhelming obstacle.
Whatever the cause of the problem, getting more Hispanics to participate is ``a serious issue that we need to address in a very proactive fashion,'' said Dr. Rodolfo Alejandro, who conducts clinical studies at UM's Diabetes Research Institute.
He is not satisfied with Hispanic response to his studies of treatments for Type I diabetes, the most serious form of the disease. ``The worst thing is to come up with a new treatment and then it doesn't apply because you didn't test it in a particular population,'' said Alejandro, who believes doctors and researchers must reach out to specific communities.
``You have to go to them,'' he said. ``We have to make sure we educate them much better on issues of different diseases. Then we can start asking them to participate in trials.''
Along with community pressure, the federal government is forcing the issue by attaching participation requirements to research grants. ``I can assure you that we devote 30 to 50 percent of our national meetings to how to recruit minorities,'' said Davila, who takes a position he describes as radical:
He believes the enormous pressure to increase the number of minorities in studies ``becomes more divisive than integrating,'' and looking at socioeconomic status would be more revealing.
The current focus of the southeastern branch of Networks in Action, which covers the Carolinas to Florida and includes Puerto Rico and the U.S. Virgin Islands, is a survey of Hispanic health-care professionals and community leaders to learn their attitudes about clinical trials and to help develop educational programs.
``We're already mentoring students, providing them opportunities to conduct research among Hispanic populations,'' Trapido said.
The cancers with the highest incidence among Hispanics are the same as for non-Hispanics, including breast, lung, prostate and colorectal cancers, Trapido said. ``In some Hispanic populations -- not the ones in South Florida -- stomach, cervical and oral cancer are higher than in white non-Hispanic populations,'' he said.
The issue of Hispanic participation has also moved to the top of the agenda for clinical trials on drug abuse treatment. Later this month the National Institute on Drug Abuse, an arm of the National Institutes of Health, is sponsoring a conference on ``Bridging Science and Culture to Improve Drug Abuse Research in Minority Communities.''
Dr. José Szapocznik of UM, who has conducted research in Miami's Hispanic communities for more than 25 years, is chairing a minority interest group of the National Institute on Drug Abuse Clinical Trials Network.
``The amount of research that has been done with Hispanics is minuscule nationally,'' said Szapocznik, who is director of the Center for Family Studies in UM's psychiatry department. ``Because most agencies get few Hispanics, or don't have the staff to take Hispanics into a clinical trial, maybe they get a few Hispanics who speak English, but very few.
``So when you analyze the data you never have enough Hispanics to see if the intervention worked with Hispanics.''
Conducting a trial in Spanish can be complicated. ``In other parts of the country it's very hard to get the concentration of Hispanic professionals you need to conduct trials,'' Szapocznik said. ``Los Angeles has 4 million Hispanics, but the number of Hispanic professionals available to do clinical trials is very small.''
Even using bilingual Hispanic therapists and interviewers, Szapocznik places a big emphasis on cultural training. ``Many times when Hispanics like myself go off to college we are taught how to do things in a way that may or may not be sensitive to how we need to work with Hispanics,'' he said.
UM's work has long shown what the rest of the drug treatment community has only realized in recent years: Dealing with the entire family is the most effective way to prevent and treat adolescent drug use.
Szapocznik's interventions have been directed at Hispanic families since the 1970s, even when he was told by national drug control agencies he was making a big mistake not limiting therapy to the individual teens. His research teams had set out to learn why there were few Hispanics in Miami's extensive drug abuse programs.
``There were a lot of Hispanic adolescents using drugs, but the problem with the programs is they were very individually oriented and they refused to have any contact with the family,'' Szapocznik said. ``The Hispanic families wouldn't take their kids there if there would be no contact with the families.''
In nationally recognized models developed since that time, Szapocznik has shown that family therapy can effectively prevent and correct all sorts of problems in adolescents.
Describing the importance of a research and therapy approach tailored to Hispanics, he talks about the critical balance researchers must strike between respect and friendliness.
``This point-counterpoint is very difficult to achieve but is very typical of our Hispanic culture,'' Szapocznik said. ``When you think about how the mainstream population gets trained, they're trained to be a little more distant. With Hispanics you have to start a little more distant but you have to try to connect very quickly.''
Improving access to medical care, tailoring research techniques, offering services in Spanish and increasing awareness of diseases are all part of the national effort to draw more Hispanics into clinical trials.
``Hispanics are now the largest minority population in the country and rapidly growing,'' Szapocznik said. ``What we need are clinical trials with enough Hispanics where we can analyze the data and find out if something works with Hispanics.''
Added Alejandro of the Diabetes Research Institute, ``Education is the most important step. We need a better message out there on what clinical research is, a clear understanding that we are trying to improve things.
``Maybe it will not help them, but in time it will help others.''