June 11 2004

What Hispanic Families Need to Know

By Perlita Perez

Hispanic/Latino families cannot escape the reality of cancer. That is because Hispanic/Latino families are known to be larger than Euro white families and with an even larger extended family. In my family, for example, there are 21 grandchildren, just on my father’s side, plus 12 aunts and uncles! Therefore, statistically, it is very likely that someone in our family will be a cancer survivor or have died of cancer. With early diagnosis and improved treatments, increasing numbers of people are becoming cancer survivors. While it is not an easy disease to treat, the results of research and clinical trials have given many people the opportunity to survive the disease.

Clinical trials are the best way to confirm that new drugs work. Now, more than ever, cancer researchers are encouraging Hispanic/Latinos across the nation to participate in clinical trials. If Hispanics/Latinos do not take part in the studies that test promising new prevention, diagnostic and treatment methods, researchers cannot know if the community will benefit equally from the new methods.

Many factors keep Hispanic/Latinos from participating in cancer research: fear of the unknown, lack of information about clinical research; distrust of research, fear of hidden costs; lack of transportation to the research center; fear of not being able to quit a research project; and even lack of childcare or elder care.

The participation of the Latino community is very important if today’s and tomor-row’s scientific progress is going to benefit the Hispanic/Latino community. Ricardo Olivo, a Minority Health and Health Disparities Research Community Outreach Coordinator for the San Diego EXPORT Center believe that a big reason for this low level of participation is the lack of information that the community has about clinical trials. “Many of us are scared and unaware, especially the elders of the community who are less familiar with the process of research,” he says. “We need aggressive outreach to inform our gente about the process of a clinical trials, benefits of participation, and current clinical trials available.” One step toward increasing involvement would be to inform the Hispanic/Latino community about what a cancer clinical trial really is and how they can get involved.

The recent surge in interest toward the Hispanic/Latino community for cancer research is due to the growing number of Americans of Hispanic/Latino descent. This is actually the fastest growing minority in the United States. In addition, there is the concern that certain cancers are more prevalent in Hispanics/Latinos. For example, cervical cancer is two to three times more common among Mexican American and Puerto Rican women than among non-Hispanic white women. The incidence rates of stomach cancer are 30-90 percent higher in Hispanic/Latino males than Euro-white males. In addition, lung cancer is the leading cause of cancer death among Hispanics.

Researchers want a sample of study participants that represent the entire population because then their findings can then be generalized to the entire population. If a sample consists of only white males age 40-60, for example, then researchers can only be sure that their findings apply to that group. They do not know for sure if the discovery will work equally well for a group of older Hispanic women, for example, or even for 40 to 60 year old Hispanic/Latino males. Since the United States population is about 13.3 percent Hispanics/Latinos, according to the 2002 U.S. census, experimental groups should also be 13.3 percent Hispanic/Latinos. However, the number of Hispanic/Latino participants is much lower than their representation in the population.

A leading barrier to participation is that many people think that participating in a clinical trial means they would be treated like guinea pigs and would be exposed to dangerous risks, but there are several reasons why this is not true.

First, when the researchers propose a study, it has to be approved by the Institutional Review Board (IRB), which consists of scientists, doctors, clergy and others from the community whose main concerns are the safety and health of the participants. The IRB reviews all the details of how the study will be conducted.

These study details are grouped together and called a research protocol. It is created with the goal of keeping participants’ risks at a minimum and producing a sample with many similarities (such as health status or medication usage) and controlled differences (such as gender, age, socioeconomic, and ethnic diversity). For example, a prostate cancer prevention study might focus only on men between the ages of 50 and 70. However, for the research findings to be widely generalized, the sample needs to have men from all ethnic and socioeconomic groups in the study, for example. Thus, a study that has not been able to attract Hispanics will produce results that may not be able to be safely generalized to include Hispanics.

A second protection offered to study participants is that no one may begin a clinical trial unless they have gone through the very thorough informed consent process. During the informed consent process, the patient learns about the purpose of the trial and the details of what will occur during the study. The patient will be presented with documents about the potential benefits and risks of the study. After the patient fully understands what will happen in the study, he or she makes the decision on whether to enter the trial.

The support of the typically large Hispanic/Latino families can be very helpful. Sometimes one family member will take part and then encourages other family members to follow.

Extended families can also create barriers. Every family has at least one member who will raise concerns related to study participation.

During the informed consent process, potential participants learn that even after agreeing to join the study, participants may withdraw from a trial at any time if they feel that continued participation in the trial is not in their best interest.

A third protection for study participants is that doctors, nurses and researchers from multiple disciplines are involved in the study and constantly observing the study participants to assure their comfort, and safety during and after the cancer clinical trial. Therefore, the participant receives the best possible care available, and their welfare is the research team’s top priority.

Some participants do not even receive the new treatment but are treated with the best standard treatment that is available for their type of cancer. This is done so that the research team can compare the effects of the new treatments with standard methods to determine if the new therapy is at least as good as or better than the standard therapy.

In addition to trials for patients already diagnosed with cancer people can participate in trial for health subjects. There are many different clinical trials designed to study the prevention, diagnosis, and detection of cancer. In reality, anyone can find a clinical trial in which they can participate.

Everyone has the opportunity to contribute to the development of tomorrow’s newest medical advances. It is a way we can recognize our loved ones who have cancer and it may also help scientists to discover ways to reduce participants’ risk of getting cancer and dying from the disease in the future. The knowledge gained through clinical trials is taking the world closer and closer to unveiling the mysteries of cancer and possibly finding a cure.

Anyone who is interested in participating in a trial should visit the website for the National Cancer Institute at http://cancerTrials.nci.nih.gov. The Cancer Information Service (CIS) at 1-800-4-CANCER (1-800-422-6237) also provides current information on cancer.

Perlita Perez is an undergraduate at the University of California at San Diego pursuing a major in Biochemistry/Cell Biology.

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