Particular groups face unique challenges in gaining access to health care, which helps account for the health care disparities observed among these groups. Four such groups were examined in depth at the workshop:
minorities and people living in rural areas in Alabama, people living near the U.S.–Mexico border, people who receive health care from rural hospitals that are economically threatened, and children who live far from hospitals and clinics and lack ready transportation to those facilities. Speakers at the workshop proposed ways to overcome the barriers to care that members of these groups encounter, thereby reducing the disparities they experience.
“I challenge every audience that I speak with to get up and touch anything real that wasn’t either produced in a rural area or produced using materials or resources that originated in a rural area,” began Dale Quinney, executive director of the Alabama Rural Health Association. “We all need the rural areas, the heroes who live and work in rural areas, and the materials and resources that come from those areas, for our survival,” he said.
Yet, these rural areas are facing difficult problems, Quinney continued. The age-adjusted mortality rate for the United States as a whole is 733.1 per 100,000 standardized population.1 In Alabama, that rate is 924.5, the fourth highest among all the states. The age-adjusted mortality rate in Alabama’s urban counties is 885.3, while in the rural counties it is 980.9, and in the Black Belt counties, it is 999.6.
Racial disparities also exist in mortality rates. For the United States as a whole, the age-adjusted mortality rates per 100,000 standardized population are 735.0 and 851.9 for the white and African American populations, respectively. In Alabama, those rates are 912.3 and 992.5. “Interestingly, the African American population nationally has a lower mortality rate than the white population here in Alabama,” said Quinney, adding that “we have a very unhealthy population in this state.”
One sign of an unhealthy population is a lack of population growth. Of the 67 counties in Alabama, 24, all of which are rural, had a smaller population in 2010 than they had had 100 years earlier in 1910. Five had only one-third of the population in 2010 than they had in 1910. Furthermore, population projections for Alabama predict that 41 of the state’s 67 counties will decrease in population from 2010 to 2040. Quinney explained:
What this means is that we are not having the economic opportunity and growth in our rural counties that we must have. Our children are going
1 Adjusting for age removes the effect of age differences in populations.
off for college or technical training or the military and are not able to come back home and have a career and be there around us when we get old and want them there and need them there. . . . This must be reversed.
In a previous position with the Center for Health Statistics in Alabama, Quinney helped develop the publication Selected Health Status Indicators: Alabama’s Caucasian and African-American Populations, which compares the African American and white populations in Alabama and the United States on approximately 90 health-related indicators (Alabama Department of Public Health, 2013). The statistics reveal stark racial disparities, both within the United States and within Alabama. For example, with septicemia, Alabama’s African American population has a rate of 26 deaths per 100,000 people compared to 17 for white Alabamians and 18 for African Americans nationally. For prostate cancer, the mortality rate among African American Alabamians was 59 per 100,000 people compared with 17 among white Alabamians and 37 among African American males nationally. For diabetes, the mortality rate among African American Alabamians is 40 compared with 17 for whites.
Quinney asked what steps Alabama could take to address health care issues in its rural communities. The first step he mentioned is expanding Medicaid. This would be an immediate step, as opposed to some actions that take longer to have effects.
Alabama should also expand the use of telehealth and telemedicine, Quinney continued. The state does not currently have parity legislation mandating that telemedicine be reimbursed by private insurance, as do Georgia, Mississippi, and Tennessee. “We need to be a leader in telemedicine rather than a follower,” he said.
Rules and regulations should be changed to allow midlevel practitioners to do what they are trained to do, Quinney recommended. He recounted a call with the chief executive officer of a hospital in Mississippi that is near Mobile, Alabama, who said that the emergency room was staffed by four nurse practitioners from Alabama who drove to Mississippi to provide services that they are not allowed to provide in their home state. “We are losing out on quality care, especially in our rural areas,” he said.
Alabama has a requirement that a hospital cannot be licensed unless it has 15 or more beds, which is a remnant of the days when long hospital stays were common. Alabama needs to change its requirements to allow small-bed-count hospitals in areas where they will not threaten the economics of other hospitals, said Quinney. The majority of hospitals in Alabama are already operating in the red, he said, so hospitals do not want others to be established that could further reduce their revenues, but small facilities could be authorized in places where they are needed.
Rural areas need help in economic development, Quinney pointed out, adding “I view geographical areas the same way as living entities. There needs to be a self-assessment of the area. Take a look at what you are good at, what you have, and then determine where you need to go in economic development.” The Black Belt, for instance, still has its rich black soils, but much of its acreage is being converted from crops and pastureland to forests, which is a long-term crop that requires at least 15 years between harvests. “We need to look at the possibility of agricultural cooperatives to allow the small land owner in the Black Belt counties to get a piece of the pie,” he said.
Churches, temples, synagogues, and mosques in Alabama have much to contribute in reducing disparities, Quinney said. “People trust the churches,” he observed. “Members of the churches know the people in their community, even if they aren’t members of that specific church, and will have them there for health educational events or screenings.” Using a small grant from the Caring Foundation with Blue Cross and Blue Shield, the Alabama Rural Health Association is developing an online church registry where churches can register their interest in hosting health-related activities. In addition, electronic bulletin boards will allow churches to post notices for health-related needs while health care providers and trainers post notices for what they can provide.
Finally, the Alabama Rural Health Association is working with the Alabama Department of Public Health to establish county health coalitions that bring together hospitals, clinics, government agencies, physicians, nurses, mental health providers, public health officials, emergency medical services, the clergy, educators, and law enforcement officers to identify health care–related problems and possible solutions. Such coalitions can generate more funding from local, state, and national sources, said Quinney. “You are not just one entity. You are a voice of the entire community,” he said.
A long-term solution to inequities is better education, Quinney concluded. People with less than a ninth-grade education in Alabama have a mortality rate two and one-quarter times higher than those with a high school education, and those with just a high school education have a death rate more than double those who have any college education. But better education cannot happen immediately, and many steps in addition to education need to be taken to reduce disparities in Alabama.
The U.S.–Mexico border region comprises 4 U.S. states, 5 Mexican states, 44 counties, and 14 pairs of sister cities that have much in common
and work closely together. In Arizona, for example, the public health and academic sectors in the two countries have a long history of partnerships, and “despite what you hear on the news, we will continue to work together,” said Samantha Sabo, associate professor of public health at the Center for Health Equity Research of Northern Arizona University. “We enjoy many binational projects at this point,” she noted.
The U.S.–Mexico border is the busiest and most traveled border in the world, with more than a billion dollars’ worth of goods crossing each day. In addition, Sabo pointed to six factors that together make the border unique:
- Shared infrastructure in health, education, commerce, and the environment
As an example, Sabo mentioned medical tourism, explaining that “when your tooth hurts, oftentimes it is cheaper to go down to the border and get your tooth fixed than it is to go to a dentist in this country.” Another example is that Texas offers in-state tuition for Mexican nationals, creating substantial educational exchanges. Such exchanges can be expected to continue as the border population continues to grow, since at current growth rates, the combined population of the border counties in the United States and the municipios in Mexico will double in about 35 years. At that point, about 30 million people will live in the border region, representing about 5 percent of the combined population of both countries, she explained.
The population along the border is younger than the U.S. population overall. Latinos living in border counties are more likely to live in poverty than their state and national counterparts (31.8 percent versus 23.4 percent nationally). Children under age 18 who live in border counties (excluding San Diego County, California) are more likely to live in poverty (37 percent) than children nationally (20 percent). In 2012 and 2013, all four border states had lower rates of employment-based private insurance and the highest rates of uninsured residents, with Texas at 27 percent, New Mexico at 24 percent, California at 21 percent, and Arizona at 20 percent, as compared with the national average of 18 percent (United States–México Border Health Commission, 2014). In 2011, 29 percent of persons age 65 and under living in U.S. border counties (not including San Diego County, California) lacked health insurance cover-
age, as compared with 22.2 percent of their respective state counterparts and 17.3 percent nationally.
In the context of rural inequities in health, Sabo concentrated on the last item in her list of distinctive characteristics: militarization, which she described as pervasive encounters with immigration officials, including local police, and enforcement of immigration and border policy using military-style tactics and weapons. For example, during identity encounters, people are asked about their citizenship based on what they look like. Formal and informal checkpoints can pop up on the way home, to work, or to a store. People can be detained and abused.
Part of this climate is the result of anti-immigrant legislation that has been increasingly introduced and enacted in state legislatures. Such laws can discourage people from approaching social services, such as enrolling children in schools or visiting public health departments for immunizations. The result is cumulative exposure to institutional arrangements that systematically marginalize groups based on race and ethnicity, gender, and class. Such exposure can produce disproportionate vulnerability, stigmatization, discrimination, human rights violations, suspicion and distrust of state institutions, and deep disparities in morbidity and mortality among disenfranchised groups.
A survey of farmworkers who were predominantly permanent residents and U.S. citizens by naturalization or by birth revealed that approximately 90 percent of them saw border patrol agents on a daily basis (Sabo and Lee, 2015). These encounters occurred in neighborhoods, at worksites, at corner stores, and in supermarkets. Approximately 30 percent of the 299 respondents said that they had experienced some type of immigration-related mistreatment by a local law enforcement agent or an immigration official. Types of mistreatment included verbal or physical abuse, and racial or ethnic profiling. About 30 percent self-reported having poor mental health in the past 30 days, with smaller percentages reporting diagnosed depression or depressive symptoms. With any type of immigration-related mistreatment, whether experienced personally or witnessed, the risk of stress increased twofold.
Sabo mentioned stories of being detained face down on the ground at gunpoint, seeing the ladders on which workers were picking fruit being shaken by law enforcement personnel, and being placed in immigration vehicles without being asked for documentation. “These stories go on and on,” she said, despite the fact that they are all permanent residents who have lived in this region for many years. She said,
Their fear is deep—their fear of retaliation from the border patrol, their fear of losing their documented status. This is a real issue, because not only is there no place to go to complain about immigration-related mistreatment—the Department of Homeland Security is a very locked gate
at this point—but even if there was, people are so fearful that something may happen to them or their families that they are choosing not to report the fear.
Building health equity in the border region requires listening and engaging in local response and resistance movements, Sabo said. An example is the Border Quilt project, which sought to express to the nation the need for revitalization and to memorialize the loss caused by militarization in the border region. Researchers, too, can use collaborative and mixed methods to listen, participate, and relay stories. The integration of statistical and thematic analysis can enlist Western and non-Western approaches to data collection, analysis, and inference to make sense of complex issues that no one method can grasp independently.
Sabo particularly emphasized the potential of working with community health workers, explaining that “they are lay leaders in their communities. They represent the socioeconomic, cultural, linguistic, and lived experience of the community members they serve. They have the pulse on most community knowledge.” She has been working through a Centers for Disease Control and Prevention–funded prevention research center to be able to understand how community health workers, through leadership and advocacy training, can convert the participants in their programs to become citizens engaged in the political process (Sabo et al., 2013). Community health workers can help create a common voice of action, engage community members in advocacy, change their own organizations to better meet the needs of populations, and engage at the civic level, such as by bringing community members to school board meetings or zoning meetings. “Community health workers change the conditions within their communities,” Sabo observed. They can “engage in various levels to take the voice of the people to the top.”
Sabo closed by citing a phrase from a migrant shelter mural that she admired: “If we don’t think differently, everything will remain the same.”
The North Carolina Rural Health Research Program at the University of North Carolina’s Cecil G. Sheps Center for Health Services Research tracks the closure of rural hospitals. It defines closure as the cessation of inpatient care, whether because the building is abandoned or it is converted to other purposes, including the provision of other health services. For example, said Sharita Thomas, a research associate at the center, a hospital might become an emergency or urgent care facility, an outpatient facility, or a rehabilitation or nursing facility.
Hospitals close for a number of reasons, Thomas continued. Contributing factors include the number of patients a hospital serves, manage-
ment styles such as the willingness to take risks, how much charity care a hospital is providing, the types of patients a hospital is seeing, how profitable a hospital is, competition with other institutions, and the mix of sources paying for care. Whatever the specific reasons, such closures affect particularly vulnerable groups. Rural populations tend to be older, poorer, sicker, and facing more barriers to receiving care, such as having transportation and insurance. Race and ethnicity compound these disparities, Thomas observed. Furthermore, closures of hospitals are not regulated, so there is no way to know whether a need for hospital services remains in a community after a hospital is closed.
Since 2005, the research program at the Sheps Center has tracked 121 closures (see Figure 5-1). About 60 percent of these closures were abandoned closures, where no health services remained in the building where the closure occurred. In particular, Alabama has seen six hospitals close since 2005, of which four were abandoned closures. The hospitals that were abandoned served about 24 percent of the area’s nonwhite residents, while the hospitals that were converted served about 18 percent of the area’s nonwhite residents.
The majority of closed hospitals were in the South, which, along with the Midwest, has the most rural hospitals. These are also the states that were least likely to expand Medicaid under the Patient Protection and Affordable Care Act (ACA). Other studies of hospital health facilities have shown that closure of trauma centers, emergency departments, and public urban hospitals disproportionately burdens racial and ethnic minorities and Medicaid beneficiaries, Thomas reported.
In looking at hospital closures since 2010, the North Carolina Rural Health Research Program has found that the rate of closures has increased from earlier periods. The closed hospitals tended to have lower levels of profitability, smaller market shares, and smaller populations to serve (Kaufman et al., 2016). Other factors may also have been involved, such as the percentages of racial and ethnic minorities in the population served, but they do not change the underlying conclusion, said Thomas. “We need alternative methods of health care delivery for these rural areas.”
The research program also distinguished rural hospitals that were abandoned and those that were converted to provide some other type of health service. In addition, it considered the race and ethnicity of the populations affected, miles to the nearest hospital, and the community voice. A survey sent to city officials, members of the media, and health care professionals in the communities where rural hospitals had closed found that the community perceived the closure to have affected vulnerable groups the most, including the elderly, racial and ethnic minorities, people living in poverty, and the physically and developmentally disabled (Thomas et al., 2015). Survey results also revealed that transportation posed a major barrier to care after the closure of a hospital.
A more recent study compared 105 hospitals that closed to hospitals with similar profitability that remained open (Thomas et al., 2016). This study found that the markets of closed rural hospitals had smaller market shares, higher rates of unemployment, and higher percentages of African Americans and Hispanics. The implication is that rural hospital closures disproportionately affect African Americans and Hispanics, as has been demonstrated in other studies of health facilities. These results raise important questions about racial segregation and political power, health outcomes after hospital closures, and other methods of health care delivery, Thomas observed.
She also briefly described a case study of two rural hospital closures in the state of North Carolina. The Blowing Rock Hospital in the western part of the state opened in March 2005 and was converted to provide nursing care in October 2013. The Vidant Pungo Hospital in the eastern part of the state opened in February 2002 and was closed and abandoned in June 2014. Both had high levels of financial distress, including difficulties with financial performance, reimbursement, and hospital and market characteristics. However, Blowing Rock had both more people and a majority white population, while Vidant Pungo served a population with a higher percentage of minorities. The Vidant Pungo population also had higher needs, as measured by socioeconomic factors and health indicators. With the Blowing Rock Hospital, the community was involved early, grants were secured to transition the facility, and the closure process was transparent. With the Vidant Pungo Hospital, transparency was lacking,
and the community did not know the hospital was going to close. “When it did, they felt like the rug was pulled from under them,” reported Thomas. As one activist stated after the closure: “Vidant’s leadership is immoral. You don’t make $100 million and close a critical access hospital.”
Thomas closed by touching on the accountability of researchers in doing these kinds of studies. “We are in a position of power with the research that we do,” she said. “We have to talk about race. We have to talk about history. We can’t default to someone else to do this.” Health outcomes result from causative factors, which include geography and history. “We don’t want to forget that,” she concluded.
As part of the work it has done for the past three decades, the Children’s Health Fund operates more than 50 state-of-the art mobile medical clinics that provide comprehensive health care for some of the country’s most medically underserved children. The clinics are “doctor’s offices on wheels,” said Dennis Johnson, executive vice president for government affairs at the Children’s Health Fund and policy director for the Earth Institute’s National Center for Disaster Preparedness at Columbia University. Most of the mobile clinics provide primary care, with some providing dental and mental health care. In turn, the Children’s Health Fund has used its experience with the clinics to inform its work on public policy.
The fund supports rural programs in Arizona, Idaho, Mississippi, Tennessee, and West Virginia. Children’s Health Fund programs in Florida and Nevada also provide health care in rural communities. These programs are informed by an adaptive learning process, said Johnson, with recognition and understanding of the full range and aggregate effect of factors that define the frame of health access in underserved communities. “We want to ensure that health status isn’t undermined or interfered with and that opportunity isn’t undermined for the kids who are poor and medically underserved,” he added.
Johnson particularly focused on the need for transportation services, explaining that “mobility has always been a key consideration in developing programs to address access barriers. We were sending mobile units out to deliver health care.” Other social determinants of health also had an influence on the program, including socioeconomic status, citizenship status, and cultural barriers, but “transportation was a big issue,” he explained.
In surveys done by the fund, 39 percent of U.S. residents reported not having public transportation available in their community, and 11 percent of U.S. households were found to not own a working vehicle. While automobile ownership did not vary significantly by area of residence, the availability of public transportation did (see Figure 5-2). In
rural areas, only 25 percent of people reported that they had access to public transportation.
Because of a lack of transportation, 4 percent of U.S. children, regardless of income, insurance status, or area of residence, missed a health care appointment in the year before the survey, including 9 percent of children in poor and low-income families. Of those who missed an appointment, 63 percent missed two or more visits during the year, and 31 percent of parents reported that they later sought emergency care for the condition associated with the health care appointment. Two to three million children in the United States were missing routine health care because of transportation difficulties.
This lack of transportation affects health in a number of ways, Johnson observed. It creates missed opportunities for immunizations and routine well-child care, increases the incidence of untreated chronic illnesses, increases the use of emergency rooms and ambulances for nonemergency care, and increases preventable hospitalizations. Medical transportation provider organizations must be committed to being part of the health care team to create a more seamless system and improve health access, Johnson said.
To quantify the severity of the issue, the Children’s Health Fund developed the Health Transportation Shortage Index. It rates factors asso-
ciated with barriers to primary care access, including area of residence, poverty (which serves as a proxy for not owning a vehicle), health professional shortages, safety net health care resources, and the public transportation infrastructure. It generates a score from 0 to 14, with scores of 8 or higher indicating where communities are at risk of inadequate health access because of transportation problems.
As an example of its rural programs, Johnson described the Idaho Children’s Health Project in south central Idaho, which is affiliated with St. Luke’s Hospital and the University of Utah Health Sciences Center. It serves a population of low-income, uninsured, and migrant seasonal farmworkers in south central Idaho, and the Children’s Health Fund participates in the program through a dental health mobile clinic. Major challenges that the program faces are a lack of transportation, a lack of Medicaid providers, the geographic spread of community-based health facilities and the patient base, the growth in the permanent population of formerly migrant workers, and Idaho’s rejection of Medicaid expansion under the ACA.
For the people it serves through the program and elsewhere, said Johnson, insurance coverage is not sufficient. Transportation deficiencies lead to suboptimal access to primary care and suboptimal management of chronic conditions. The result can be overuse of emergency care services, increased referrals to more costly specialists, increased health care costs, and poorer health outcomes. “The takeaway for us is that, in rural America, transportation access is the critical connective tissue supporting health access, opportunity, and ultimately equity,” he noted.
Johnson closed with several recommended actions that apply both in Idaho and more broadly in rural communities. One is to monitor nonemergency medical transportation providers to ensure that they provide appropriate access. Educating and convening stakeholders could make them more aware of the ways in which transportation access affects health. Partnerships with hospitals, community health centers, and other human services providers could improve care, as could outreach to and engagement of state transportation officials in a meaningful cross-sector dialogue that fosters and enhances collaborative planning to better serve community needs. Involving local independent contractors, community colleges, and small businesses is good for communities and for people who need better access to health care. At the federal level, protecting Medicaid, budget support for the National Health Service Corps and Community Health Centers, and reimbursement for telehealth under Medicaid would all pay health dividends.
The major topic of discussion during the question-and-answer session was how to prevent problems before they result in poor health outcomes. Sabo, for example, pointed out that social determinants of health are important factors in border communities. Community health workers are one way to address the longer-term root causes of health issues. But many members of those communities are dealing with basic survival strategies rather than focusing on long-term issues. “What will I do with my kids if I am picked up? Who is going to take over my mortgage payment? Who is going to take over my car payment?” she asked.
Johnson advocated working through some of the institutions that serve children and their families, including preschool, Head Start, and day care. He also noted that the Children’s Health Fund screens for what they call “health barriers to learning,” which are preventable illnesses that impede learning. Such illnesses as vision or hearing problems, behavioral health issues, and asthma can quickly be addressed. Johnson explained:
If we focus on the front-end of children’s lives and make sure they are optimally healthy and learning appropriately and not missing school, then we can take significant steps forward in terms of improving the likelihood that they will be healthy and well educated later in life.
This approach also empowers parents and recognizes the primacy of their role in their children’s lives.
Johnson also called attention to the innovative telehealth programs that have been established for rural communities. The Center for Connected Health Policy has been tracking such programs at the state and federal level, he said.
Quinney advocated empowering other people in the trenches “to share ideas on how to improve things with those who are higher up.” People who have direct experience with these issues have ideas that can be valuable. “There is plenty of intelligence out in the trenches. Call on it,” he said.
Romo, from the previous panel, emphasized the power of educating people about health issues they may face, such as prostate cancer. Money is needed to do this kind of outreach, but funds for this purpose can be difficult to secure. “There are people in the community who make good teachers, who can take the information about breast cancer, cervical cancer, every kind of cancer, and teach it and share it so that we save lives,” she noted.
The same approach is not appropriate for every community, Thomas observed, adding that:
Senator Grassley has the REACH Act that is out there that is looking at different models of health delivery in rural areas, different ways to reimburse those facilities so that they can have the freedom to innovate and design a program that works specifically for their community, because it is not going to be the same for every rural community.
Innovations can also help manage the delivery of health care to the relatively small percentage of people who incur a large portion of health care costs while “maintaining our focus on the broader public health questions and commitment that we need to have to ensure that the public’s health continues to improve,” Thomas said.