The State of Latino Cancer Policy and Advocacy: 2022 Advancing the Science of Cancer in Latinos

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This is part of the “Advancing the Science of Cancer in Latinos: 2022 Conference Proceedings,” which summarizes findings and discussions of the 2022 Advancing the Science of Cancer in Latinos Conference on Feb. 23-25, 2022, in San Antonio, Texas.

Effective Latino Cancer Policy Requires Effective Legislative Advocacy

Dr. Jaime Estrada is the Founder and President of Texas Doctors for Social Responsibility, as well as the Founder and Board Chair of the Adolescent and Young Adult Cancer Foundation.

Falling through the cracks: a case study

Jaime Estrada
Jaime Estrada

Dr. Jaime Estrada began by sharing a case study of a 35-year-old man from central Texas. This man was uninsured and working in construction when he began having headaches for several weeks. He was diagnosed with a curable brain tumor called oligodendroglioma. After moving to Austin where he was unable to find work and began having seizures, he moved to San Antonio to live with a relative. Although he applied for Medicaid, Social Security, and CareLink, was denied for each program and was eventually lost to follow-up. This heartbreaking case is an example of the deplorable state of healthcare for uninsured cancer patients in Texas. Nationwide, up to 650,000 cancer patients are uninsured and live in non-expansion states such as Texas. Many of them are Latinos.1

Health insurance disparities among Latinx cancer patients

Latinos make up the largest and youngest community of color in the US with a population of 60.6 million. Despite substantial reductions in the percentage of uninsured workers following the passage of the Affordable Care Act, Hispanic men and women continue to be the least likely to have health insurance of any major racial or ethnic group in Texas. Among those 18 to 64 years of age, 26% of Hispanic individuals were uninsured, compared to 9% of non-Hispanic White individuals in 2017-2018. Uninsured rates are highest in the Mexican population (30%) and those who are foreign born (37%). Hispanics are also less likely to have a usual source of care compared to non-Hispanic Whites, especially men. Expanding Medicaid in states with large Hispanic populations, and extending coverage to undocumented immigrants, the majority of whom identify as Hispanic, would be a major step in addressing these inequities.2

Cancer is the leading cause of mortality among Latinos, accounting for 20% of deaths. In fact, 1 in 3 Hispanic men and women will be diagnosed with cancer in their lifetime, with 1 in 5 men and 1 in 7 women dying from the disease. Many factors contribute to this prevalence, including socioeconomic status, structural racism, cultural values and beliefs, acculturation, and access to care.2

Cancer is not the only condition affecting Latinos, however. The Covid-19 pandemic also disproportionately affected the Hispanic community and communities of color in the areas of virus case burden, mortality, employment, health insurance, and access to healthcare. Further, life expectancy in Hispanic individuals declined by three years in 2020, compared to a one year decline among non-Hispanic White individuals.2

The importance of Medicaid

Medicaid plays a vital role in providing healthcare coverage to lower income cancer patients and survivors, covering more than 2 million Americans with a history of cancer. Following the enactment of the Affordable Care Act, expansion states provided all low-income adults access to healthcare through Medicaid. However, countless individuals in non-expansion states such as Texas still lack access to a healthcare coverage option.3

Patients covered by Medicaid are more likely to receive preventive care and cancer treatment services. Cancer in these individuals is identified at an earlier stage with better outcomes. Medicaid also promotes tobacco cessation and provides financial protection for individuals and families. Medicaid expansion even has a positive impact on states’ economies.3,4

A pervasive problem and a potential solution

The lack of Medicaid expansion in Texas, along with the stringent eligibility requirements, have driven the uninsured rate in the state to 18.4% in 2019, the highest rate in the US, compared to the national average of 8.5%. Although 5 million residents are currently covered by Medicaid, an additional 1.7 million Texas residents would be covered if the state accepted expansion. In 2022, Texas left 15.3 billion federal dollars on the table by not expanding Medicaid. As a matter of fact, from 2014 to 2024, Texas residents will have paid $36.2 billion in federal taxes that will pay for Medicaid expansion in other states.5

Dr. Estrada concluded his presentation by outlining some tenets of effective legislative advocacy. First is participation in active state advocacy coalitions and organizations, which in Texas include Cover Texas Now, SickofitTX, and Texas Doctors for Social Responsibility. It is also vital to educate the public, medical professionals, and elected officials on the economic and health benefits of the expansion. Empowering constituents of key legislators to ask their representatives to sponsor and support expansion bills can be an effective strategy, as well as voting and supporting registration. If these principles of effective legislative advocacy are enacted, the hope of better healthcare for Latinos may be realized.

References

  1. Moss HA, Wu J, Kaplan SJ, Zafar SY. The Affordable Care Act’s Medicaid expansion and impact along the cancer-care continuum: a systematic review. J Natl Cancer Inst. 2020;112(8):779-791.
  2. American Cancer Society. Cancer facts and figures for Hispanic/Latino people 2021-2023. Accessed October 14, 2022. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-hispanics-and-latinos/hispanic-latino-2021-2023-cancer-facts-and-figures.pdf
  3. American Cancer Society Cancer Action Network. https://www.fightcancer.org/policy-resources/medicaid-ensuring-access-affordable-health-care-coverage-lower-income-cancer.
  4. Episcopal Health Foundation. The Perryman Group: economic benefits of expanding health insurance coverage in Texas. Published April 2019. Accessed October 14, 2022. https://www.episcopalhealth.org/wp-content/uploads/2020/09/Perryman-Health-Insurance-Expansion-03-29-2019.pdf
  5. Healthinsurance.org. Texas and the ACA’s Medicaid expansion. Accessed October 14, 2022. https://www.healthinsurance.org/medicaid/texas/

The State of Policy Advocacy in Latino Cancer

Dr. Rogelio Sáenz is a Professor in the College of Demography at the University of Texas San Antonio, and has written extensively on Latinx race and ethnic relations, inequality, immigration, public policy, social justice, human rights, and the impact of COVID on the Latinx community. The presentation was co-authored by Julie Gonzalez, Ph.D. student in the Department of Demography at University of Texas at San Antonio.

The growing Latino population with an increasing cancer burden

Rogelio Saenz
Rogelio Saenz

Dr. Sáenz began by speculating possible reasons why the Latinx population is often overlooked in cancer research, despite cancer being the community’s major killer. Potential causes of this neglect may be the youthfulness of the Latino population, the Latino paradox of longer life expectancy despite lower economic resources, or the lower cancer incidence. However, Latinos have higher rates of liver cancer, stomach cancer, and cervical cancer, all of which are infection-related, more likely to be preventable, and associated with low levels of access to adequate healthcare.

The Latino population is growing, having quadrupled from 1980 to 2020 and accounting for more than half of US population growth from 2010 to 2020. The population is also aging, with the 85+ Latino population growing by 72.5% from 2010 to 2019, more rapidly than any other age group. Despite this growing population, however, Latinos have the highest percentage of persons 19 to 64 years of age without health insurance, at 25.9%. When considering those without US citizenship, that number increases to 49.0%.

The Latino population is also disproportionately bearing the burden of increased cancer rates. From 1999 to 2016, cancer cases have increased by 106.0% in the Latino community, compared to a 17.5% and 50.0% increase in White and Black communities respectively. This trend is expected to continue, with Latino cancer cases accounting for 8.1% of overall US cases in 2016, but predicted to account for 17.6% by 2060.

The state of Latino cancer advocacy

Despite the growing Latino population and the growing cancer burden on this population, Latino voices advocating policy change are missing. In Texas, for example, although Latino and White populations are approximately the same in number, only 50.7% of Latinos are eligible to vote, compared to 79.2% of the White demographic.

To combat this trend, Dr. Sáenz referred to the work of Dr. Kate Murray and colleagues as they studied Latino and political advocacy for cancer control in a US-Mexico border community. This work emphasizes the importance of widespread media dissemination and grassroots efforts related to immigration reform and environmental justice. In Dr. Murray’s work, 42 participants were recruited from the border community to participate in political health advocacy. Several themes emerged. First, participants noted the lack of awareness of how politics are linked to fighting cancer. A second theme were the practical barriers to advocacy, including time, family responsibilities, immigration status, and more. Cultural and contextual barriers to advocacy, such as distrust in the government and a lack of Latino politicians, were also noted; as well as an overall need for tailored approaches regarding Latino engagement in advocacy.

Current players in the advocacy field

In light of this need, several organizations have stepped to the forefront of Latino cancer policy advocacy. Some examples are Salud America, which is dedicated to providing information on cancer in the Latino community and hosting an annual conference on the same topic; the UC Davis Health Comprehensive Center, which has started the Latinos United for Cancer Health Advancement (LUCHA); the Memorial Sloan Kettering Cancer Center, which focuses on Latinos; and the Nuestras Voces Network, which emphasizes education as well as organizational efforts. Other organizations, such as Public Health-Seattle & King County/Access & Outreach and the Hispanic Advisory Council of Cancer Treatment, are also involved in policy advocacy.

Dr. Sáenz concluded by providing the context of racism to the history of Latinos and cancer. For many years, the message was “know your place, keep quiet”. Now, however, democratic and social justice conceptual models show that education, advocacy, and policy changes at the grassroots level can be effective. Some such efforts are already underway, and others can be grown through coordination and collaborative energies. The heart of change, however, starts with each individual asking themselves “What can I do?” to contribute to building political advocacy.

By The Numbers By The Numbers

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Expected rise in Latino cancer cases in coming years

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