While Hispanics comprise 17 percent of the U.S. population, they account for less than 1 percent of all participants in research funded by the National Institutes of Health.
Sindy Benavides, Chief Executive Officer of the League of United Latin American Citizens
, shares how an ambitious medical research effort aims to revolutionize treatment for Hispanics and all Americans.
Ortiz: The National Health Council estimates that more than 40% of Americans suffer from generally incurable and chronic diseases. Researchers from the National Institutes of Health and community advocates are appealing to 1 million Americans to be part of medical history. Hello, and welcome to "Comcast Newsmakers." I´m Nathalia Ortiz. And joining me to discuss efforts to create the largest-ever health-data resource, which will help create more precise medical treatments for Latinos and people of all backgrounds is Sindy Benavides, Chief Executive Officer of the League of United Latin American Citizens, also known as LULAC. Sindy, welcome to the program.
Benavides: Nathalia, thank you for having me.
Ortiz: First of all, I want you to break down what precision medicine is, because I confess that when I was first exposed to this idea, it was pretty overwhelming, and I think that it´s fairly unfamiliar to most people out there, though I suspect it will become much more familiar with the years to come. Break it down for us, Sindy.
Benavides: So, when we look at precision medicine, Nathalia, we´re looking at an emerging approach of disease treatment that´s not looking at the average patient. It´s looking at the individual. What is your lifestyle? Where do you live? What is the genetics are involved? And, you know, to give you just, like, the quick wrap-up, I want you to think about, like, if you wear contact lenses or you wear glasses. Your glasses are specifically to your eyes. Or if you have diabetes, the insulin that you take, the number, the amount, it´s very specific to your own body. So when we´re looking at precision medicine, it´s really looking at this emerging idea of taking medicine for the average individual and making it really precise for the patient.
Ortiz: So when we really get down to it, what it is, is you´re trying to create a database. You´re trying to gather information, right, from people all over the country, in this case, specifically minorities or Hispanics, right, which is, I know, the focus of what you´re trying to gather. And so I know that there are rising health concerns for Hispanics that perhaps we could somehow avoid, prevent, or treat better. Is that the idea?
Benavides: So the idea is definitely looking at the fact that, for Latinos, there´s a high index of diabetes when we look at blood, high blood pressure, when we look at other indexes of what is impacting our community. And so for us, LULAC has joined partnered with the NIH All of Us Research Program to enlist over 1 million volunteers to participate. And part of it, Nathalia, is that if we seek to have these remedies and these cures in the future, we need to be more than 1% of the participants in clinical trials, right? We´re 17% of the population. And so when we´re looking at, "What could make, you know, my child better?" or, "What is something that would help with Alzheimer´s for my grandmother?" or, "What is, you know, something that would help with asthma with my cousin in Los Angeles?" what are some of those factors that are impacting us? And with this program, it´s not only looking at individuals who may have an existing disease but at healthy individuals, as well. And it goes from ages 18 and up, right? So, like, we´re looking at the spectrum. And for us, particularly for LULAC, it´s making sure that our community, Latinos, are participating because we´re just 1% of clinical trials through NIH.
Ortiz: Right now, we´re just 1%, and so what you want to do is -- this is basically a -- we´re striving to create tailor-made treatment or prevention for people´s health issues, right? I mean, we´re trying to make what right now is a one-size-fits-all sort of approach to more specific.
Benavides: That´s correct. And so, you know, just to give you a quick story, about 10 years ago, my little brother had something called Guillain-Barré syndrome, and the medical doctors at Inova Fairfax could not find the treatment for him. Nothing seemed to work. Something that works for many of the other patients, for some reason, was not working for him, and they had to take, basically, a treatment that they had in the 1970s, and that finally was able to work for him. Why? I mean, like, the question was why it didn´t work for him? Was it the genetics? Was it is lifestyle? Was it where he lived? What exactly was it that -- some things work for some, and some things don´t work for others.
Ortiz: Right, that´s, I think, the key, right, is that we´re not all created equal -- I mean, we´re equal, but we´re not all made the same way. We have different things going on in our bodies, right, and that may affect the treatment or, I guess, react differently depending on what treatment is given or medication is given, and that´s what you´re trying to do. I know that there also -- you wanted to speak about the rising HIV statistics for Hispanics, and you had said to me earlier that in 2015, Latinos accounted to 1/4 of all HIV diagnoses. Why is that, Sindy?
Benavides: You know, when we´re looking at that, Nathalia, it´s very concerning, first and foremost, right? And so we´re looking at the overall, you know, barriers that exist. Is it access to health care? Is it a language barrier? Is it a stigma? Is it not having the proper treatments available to the community? And so, for us, it´s making sure that we´re raising awareness about HIV prevention, and, you know, if our community has already contracted HIV, where can they go, where can they access this information? And so we´re working closely with CDC through our pact, our partnering, coming together against AIDS, and we´ve been doing that for the last three years because, you know, the fact that 1/4 of all new diagnoses of HIV are in the Latino community is something that I think can be preventable in the future. And so, for us, it´s making sure that our community is working with a trusted volunteer organization like ours, making sure that they understand, where are the health providers, where can they go to get tested? And so with LULAC, we´ve partnered with our council. So you´ll see us at the ferias, you´ll see us at the local events, making sure that we´re raising awareness, and trying to break down some of the stigmas that exist.
Ortiz: Thank you so much, Sindy. I appreciate you being with us today.
Benavides: Thank you.
Ortiz: Sindy Benavides, Chief Executive Officer of the League of United Latin American Citizens, thank you for joining us. And thank you for joining us, as well. For more great conversations with leaders in your community and across the nation, visit comcastnewsmakers.com. I´m Nathalia Ortiz.