The Centers for Disease Control (CDC) defines health equity as “the state in which everyone has a fair and just opportunity to attain their highest level of health.”  Barriers to access are often the greatest hindrance to achieving health equity, which requires overcoming economic, social, and other obstacles to health and care and eliminating “preventable health disparities.” Overcoming these barriers is often an ongoing struggle, which has been a particular challenge for the Latino community.  

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A graduate of Stanford as well as UCLA, Dr. Elena Ríos founded the National Hispanic Medical Association (NHMA) in 1994 precisely to help break down these barriers and make healthcare more equitable. With a mission to improve the health of Hispanics, the NHMA represents the interests of 50,000 Hispanic physicians in the U.S. Prior to NHMA, Dr. Rios served as president of the Chicano/Latino Medical Association of California and was an Advisor for Regional and Minority Women’s Health for the U.S. Department of Health and Human Services (HHS). She’s devoted her distinguished career to health equity and is passionate on the subject of achieving it for Latinos.

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“Access is a big issue. Access to services in our community is usually in the big hospitals not out in the community. The community hospitals have suffered and closed down. Rural hospitals especially because doctors and nurses aren’t able to sustain their own quality of life. It’s hard to get some of them to go to those areas,” says Ríos. 

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According to her, access means those services being available and affordable, including any medications. Ríos adds that mental health is a unique barrier to health equity faced by Latinos, which became apparent when at the height of the pandemic so many Latinos were in jobs they couldn’t do remotely, such as the service and health care industries.
 
“People didn’t realize until COVID hit how much mental health care is needed for our Latino families who are in essential jobs. The whole disparity issue, the lack of equity, is not a problem with the people, it’s the system that makes it that way. There was a real awareness that we need to do a better job in helping underserved communities,” she says.

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Ríos notes that when it comes to health equity, too often legislators are not looking at the big, interconnected picture: “Policymakers are caught up in looking for policies that just look at specific things, like housing, education, but when it comes to the health of a community, all of those things have to be connected. There really needs to be more of a holistic approach to policymaking because health equity affects everything else.” 

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Along with the NHMA, there are other groups and organizations that focus on issues of health equity. One of them is the Obesity Action Coalition (OAC), a Tampa-based patient advocacy organization for people living with obesity.  

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According to OAC president and CEO Joseph Nadglowski, it’s important to start with the correct terminology. “We say people living with obesity, or a person with obesity. You would never say someone is cancerous, so don’t say obese person,” he says. 

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People don’t generally blame a person for getting cancer or suffering from other medical conditions, but obesity is treated differently when it is ultimately rooted in lack of access, continues Nadglowski: “One of our biggest challenges is getting people to see that obesity is much more complicated than being a personal failing. It is a genetic and environmental problem more than an individual problem. We can talk all we want about telling people hey, you need a better diet, you need to exercise, but if you don’t have access to high-quality food or you don’t live in a neighborhood that’s safe enough in such activity, it increases the challenges. This is about much more than personal choice.”

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Along with Ríos, Nadglowski confirms the key is access: “One in five Latinos don’t even have health insurance; they don’t have the money, and even if they did, health insurance policies rarely cover all of obesity care. I can’t even offer it to our employees here [at OAC] as part of their health insurance because it’s not offered. So people may say ‘today is the day I do something about how my weight is affecting my health’ but then their health provider says I’d love to help but your health insurance doesn’t cover that, so you have to pay out of your own pocket and that’s where we lose an opportunity to help. … About 45% of Latinos live with obesity. It is a health equity issue for the simple fact that we’re ignoring the problem and not giving people the chance to get to their best level of health.”

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Health equity also means ensuring that any measures to help those living with obesity are culturally appropriate: “One of the challenges we have in the U.S. with our diet and behavioral programs is that they’re designed for white European cultures. You’re ignoring culturally appropriate foods and how to prepare them in a healthy way, and it’s not just about making better choices, it’s about seeing if that choice is even an option. Is it available, can I afford it?”

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Nadglowski mentions that what he calls evidence-based care is a powerful tool in treating weight issues. Evidence-based care means that any treatment or aid available be reliable, valid, legitimate, and tested. “This is a huge problem. It’s frustrating for us. Considerably more money is spent on snake-oil remedies than evidence-based care. You see a lot of unregulated products that promise miracle weight loss. In most cases those unregulated products don’t deliver. We should make it easier to treat obesity with evidence-based care.”

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The diagnosis and treatment of cancer is another prime example of where health disparities can surface. According to data from the 2020 census, cancer is the leading cause of death among Hispanic people, accounting for 20% of deaths. And yet rates of routine screenings for cancer such as mammograms or colonoscopies remain lower for Hispanic adults than non-Hispanic white adults.
 
Nick Magallanes, a policy expert at genomic sequencing company Illumina, says one key to better cancer outcomes is ensuring the Latino community has widespread access to and coverage for state-of-the-art technologies and treatments. That includes the technologies at Illumina, which is revolutionizing early detection and screening for a multitude of conditions, including cancer. 

”When you look at health disparities, access to care, equity, and innovative, cutting-edge technologies, Black and Brown communities are often the ones that do not have access to that kind of care,” Magallanes says.

Patients with rare diseases also face unique challenges in achieving health equity. “It’s important to remember that a rare disease patient is inherently disadvantaged by the very fact that they are a rare disease patient – it can take nearly 5 years to get a diagnosis, and even then, more than 90 percent of rare diseases do not have an FDA-approved treatment,” says Tamar Thompson, Vice President, Head of Corporate Affairs at Alexion/AstraZeneca Rare Disease.
A key opinion leader on the topic of health equity, Thompson oversees global communications, corporate social responsibility, diversity and inclusion, health equity, and public affairs activities for the company.

“Patients who are members of marginalized populations already face deep issues of inequity. Adding a rare disease diagnosis puts them at an even greater disadvantage. That’s because these communities have limited access to health care providers and facilities, and many providers---even those who are part of larger medical systems---have limited experience with rare diseases. Now layer in language barriers and providers’ unconscious biases, and a Latino patient’s symptoms may be dismissed, misinterpreted, or misunderstood, complicating and delaying their diagnosis and treatment,” says Thompson.

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Another issue is that certain rare diseases simply haven’t been adequately studied in the Latino community: “There’s a reluctance to participate in clinical trials, given past mistreatment of minorities. Yet surveys have shown that Latinos are interested in participating in clinical trials, so we – as an industry -- need to make every effort to raise awareness and be inclusive in our trial designs. At Alexion, we are exploring different approaches in how we design our studies, where we locate them, and how we can integrate digital health technologies into trials so we can reach even more people.” 

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Forty years ago, Congress passed the Orphan Drug Act (ODA), which led to a significant increase in the number of FDA-approved drugs for the treatment of rare diseases. According to Thompson, ODA allowed Alexion “to make tremendous progress” and “provided the industry with R&D and exclusivity incentives, helping clear a regulatory pathway for us to get more treatments to more patients.” 

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But Thompson believes healthcare leaders still have a long way to go: “There is still much that needs to be done to close the gaps that still exist for rare disease patients, especially those who belong to already-marginalized communities.”

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One of the solutions the NHMA is hoping will close the health equity gap and bring more culturally appropriate healthcare solutions is bringing more Hispanics into the healthcare field. Many times, Latino families feel they can’t possibly take on what could be an enormous financial burden of medical school or other professional health studies, but there are solutions to these concerns.  

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“There are universities that pay for the tuition. We make scholarships available. There are other groups with help. We need more Latinos and Latinas to be doctors and nurses, and dentists, and other health professionals. And it’s not that one group has more than the other, it’s that everybody has the chance to be in the positions of decision-making. That’s how we can hope to help change things and have health equity,” concludes Ríos.