Alzheimer’s Disease is a progressive brain disorder that causes loss of memory and other functions of the brain such as behavior, advancing to the degree that patients can no longer accomplish daily tasks. Alzheimer’s accounts for 60 to 80 percent of dementia cases and currently has no cure: the only medications available alleviate cognitive symptoms but do not treat the underlying condition. This conditions affects all ethnicities, but poses a particular threat to the Latino community. According to researchers at the University of Southern California, Latinos are 50 percent more likely to develop Alzheimer’s Disease than those of Caucasian descent due to a variety of potential factors such as genetics, general socioeconomic differences, inequities in healthcare and lifestyle. Indeed, between 2012 and 2060, the number of Latinos in the United States with the disease is projected to increase from 370,000 people to more than 3.5 million individuals: a growth of 832 percent. Unfortunately, available treatments and clinical trials are not adequately meeting the needs of this community despite the rising demand.
Many clinical trials are currently testing new treatment possibilities for Alzheimer’s Disease, however, many of these studies will not let non-English speakers participate. Since many Spanish-speaking immigrants in the United States do not yet speak English fluently, this eliminates or drastically reduces the representation of an entire group of people in such trials. According to a study in Clinical Neuropsychology, many researchers and clinicians have been advised not to use interpreters as part of neuropsychological testing due to previous observations and clinical experiences indicating that they damage the validity of such studies.
Ethical considerations aside, this reasoning seemingly ignores the fact that selectively removing a piece of a population in a study destroys random sampling and introduces error into the experiment. If a clinical trial is testing a drug that is meant to be used for the entire population, the sample in the study must accurately represent that population. With key parts of the genetic pool missing, drugs may be approved that are not effective for certain ethnicities, causing discrimination in the healthcare system.
Telemedicine may provide a solution to this disparity in clinical trials. Joe Kim, the senior advisor in patient experience and design innovation at Eli Lilly (a pharmaceutical company), says that “If we can virtualize trials and allow patients to enroll remotely, not only would it lower the burden on patients but it would also expand the patient population that’s eligible for the trial” This would not only allow non-English speakers to take part in the trial but also ease the burden of transportation, which can put a strain on working family members who must take time to drive their loved ones for treatment.
In addition to clinical trials, disparities also exist when diagnosing patients with Alzheimer’s Disease. According to Dr. Benjamin Sommers, a physician who studies health policy for vulnerable populations at the Harvard T.H. Chan School of Public Health, it is “very hard to find a hospital in the [Boston] area that does Spanish-language dementia testing… there are months-long waiting times… and sometimes such testing is not available at all”
It is imperative that researchers and clinicians address these disparities in order to provide high-quality healthcare to all. Active citizens can facilitate this process by lobbying for more funding to support Alzheimer’s research and policy that develops an action plan at both the federal and state level for addressing the disparities in healthcare for Latinos and other minorities of color. Citizens can also support efforts to educate the public about these issues and develop strategies for early detection of Alzheimer’s Disease in all communities. It is also important that more clinicians and researchers be trained and hired who speak Spanish and other languages besides English. Finally, it is important that clinical trials incorporate strategies such as telemedicine to allow non-English speakers to access such studies. When equity does not exist in the laboratory, this effect spreads to the general population, violating the ideals of democracy and the very core of human decency.
Kate Lee is a contributor to The Daily Campus opinion section. She can be reached via email at Katherine.email@example.com .