A Right to Equal Care: Health Inequalities Among People of Color
Health disparities adversely affect groups of people who have experienced obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; or other characteristics that have historically been linked to discrimination or exclusion.
-- Healthy People 2020
The NIH defines health inequalities (or disparities) as the "differences in the ... prevalence, mortality and burden of disease ... among specific groups in the U.S." In particular, studies have shown that minority groups in the U.S. have higher rates of chronic conditions and worse health outcomes compared to whites. For example, cancer rates among African Americans are 10% higher than whites, and African Americans and Latinos are twice as likely to develop diabetes. The rate of asthma is 28% higher in African Americans than whites, and they also account for 22% of hepatitis C cases, even though they make up only 13% of the U.S. population.
Who we are and where we live matters to our health. Many factors, alone or in combination, can cause health inequalities, including poverty, location, race, ethnicity, gender, age, sexual orientation, etc. Overcrowded and underfunded clinics or a failure to reach vulnerable people contribute to the problem. Even if policymakers could address some of these underlying problems, health inequalities would remain in other areas. Studies show, for example, that even if we succeeded in eliminating overcrowding in clinics, it would only have a modest effect on quality of life for African Americans, who experience poor health as a group.
Substance use, sexually transmitted diseases, poverty, stigma, and discrimination make Blacks and Latinos more vulnerable to many preventable diseases, including HIV. But health is not a privilege -- it is a human right. From a public health perspective, each person should be able to achieve "full health potential" regardless of social and economic factors.
In the U.S., health inequalities often occur due to racial and ethnic differences, but elsewhere in the world it usually refers to differences arising from economic status and from being a part of certain groups. These differences are often both unfair and avoidable. For example, death rates among new mothers in the U.S. are higher among women of color than among white women, and low birth weight is more common among female newborns than among males. Better policies and interventions and the removal of barriers to health care for minorities could help address these inequalities, even if the causes of the disparities are unknown.
A Global Issue
Economic growth and well-being around the world has been threatened by the HIV epidemic. The epidemic and its related problems are especially dire in developing countries in areas where money and resources are scarce, such as sub-Saharan Africa, South Asia, and the Caribbean. Fortunately, the work of AIDS activists has made HIV treatment and medical services more available in many countries around the world, with foreign aid. Low-cost generic drugs and more effective HIV meds have greatly improved the life expectancy and quality of life of people with HIV, narrowing health inequalities.
Looking at the global HIV epidemic helps us to understand efforts to fight HIV in the U.S. For instance, sub-Saharan Africa is a region with an underdeveloped economic structure, much poverty, and low employment. But highly sophisticated and well-implemented programs have shown success in fighting the region's epidemic. These strategies are part of complex systems involving national and international funding combined with local oversight. The full participation of every stakeholder (civil society, local governments, and foreign providers) is essential to these programs' success.
The sub-Saharan epidemic is especially severe -- in Swaziland, for example, 28% of all adults are living with HIV. Most transmissions occur through heterosexual sex. Women are more vulnerable to HIV because they lack economic opportunities and as an effect of their role in society, In particular, younger women can be forced to have sex with older men for money, food, or housing. Many children have been orphaned by HIV and are at risk themselves, while there are few safety nets to help them. Using limited resources, the growth of HIV infection rates has been contained but continues to affect certain groups (MSM, sex workers, women, IV drug users) more than others. And the success of the newer programs has prolonged people's lives so that are also aging with HIV, adding more pressure to the underfunded and overcrowded health care system.
Foreign aid through PEPFAR, the Global Fund, and the U.N. accounts for more than 80% of the effective treatment of HIV-positive people in sub-Saharan Africa. But these funds are vulnerable to cuts. As quality and length of life improve due to greater access to HIV treatment, interventions that provide the best value for money are essential.
A Stubborn Epidemic
In New York City, the number of new HIV infections remains high compared with that in other U.S. cities. HIV interventions in NYC have had some success in slowing infections overall, but have fallen short when it comes to protecting minorities. Here, infections are more prevalent among certain racial/ethnic groups and those engaging in certain risk behaviors. For instance, Africans Americans, Latinos, and women are at greater risk for HIV, and often have lower economic status. HIV rates for these groups are higher compared with those of Whites and Asians. While new HIV infections remain high in NYC (2,718 in 2014), they are declining, particularly in newborns (none were born with HIV in 2014). At the same time, new infections are rising among Black and Latino males and young MSM but are falling in other groups, including IDUs and heterosexuals.
Of equal concern, survival rates five years after an HIV diagnosis vary across these groups. Whites have the highest survival rates (around 98%), while Blacks and Latinos have an average of 92%.
Being economically disadvantaged increases one's risk for HIV, leading to premature death and disability. Rates of HIV infection and deaths from HIV are higher in certain neighborhoods: Chelsea-Clinton, the south Bronx, Harlem-Morningside Heights, and Central/Southeast Brooklyn -- all neighborhoods with a majority of residents living below the federal poverty level.
The intersection of drug use and the criminal justice system is an important factor in the spread of HIV in minority groups. The prison system weakens social and family networks, and the family left behind frequently faces lowered income and increased financial challenges. In an effort to address the dual issues of drugs and crime, we have adopted an uneasy mix of public health and public safety approaches. We treat the substance use as a health problem and punish the illegal behavior with jail. But the individuals treated and punished often return to drug use and to jail. These policies have proven to be ineffective in addressing the social problems affecting these historically underserved and underrepresented communities that lead to substance use in the first place.
Since 2009, we have seen great improvements in the numbers of New Yorkers with HIV who are linked to care and have experienced significant viral suppression. But inequalities in these areas remain among minority groups. Women were more likely to gain access to care than men but achieved lower rates of viral suppression. Viral suppression was higher among Whites than among people of color. Furthermore, the percent of people infected with drug-resistant HIV increased from 11% in 2010 to 17% in 2013. If this pattern follows others trends, people of color will be more affected by this than Whites.
New York State's Plan to End the Epidemic focuses on increasing the number of people who achieve and maintain an undetectable viral load, since that leads to a longer life and lower risk of HIV transmission. In a study of 407 people by the Medical Monitoring Project, 62% of New Yorkers reported complete adherence to their HIV meds during the preceding three months. Women, Blacks, and older adults reported the highest adherence levels. Finally, NYC partner notification services assisted in early detection of new cases and linked the newly diagnosed to care. NYC has taken bold steps towards stabilizing of the epidemic but health inequalities still remain. Hopefully, Governor Cuomo's recent announcement of $200 million in funds to end the epidemic in NYS will address this longstanding problem.
Health Inequalities Among Latinos
Latinos are the largest minority group in the U.S., making up 15% of the population -- a number that will likely double by 2050. The largest Latino ethnic groups are Mexicans, Puerto Ricans, and Cubans, but the breakdown varies among cities. Place of birth, length of time in the U.S., and identification with U.S. language and culture are predictors of Latino health outcomes.
Heart disease is the leading cause of death for Latinos, particularly for Puerto Ricans and those with lower economic status. Some studies show that Latinos have higher levels of depression than Whites, and that Mexican- and Cuban-Americans are at higher risk than other Latinos for circulatory problems, such as atherosclerosis (hardening of the arteries). Smoking is very high among Puerto Rican women and Cubans, compared with other Latinos.
The impact of certain medical conditions on Latinos is not known. For example, there are almost no data on the number of older U.S. Latinos with hearing loss. By the same token, high blood pressure, obesity, and diabetes are very common among Latinos. Very little, however, is known about how this varies by national group and gender.
Disability and early death due to HIV among Latinos in NYC suggest that the epidemic is driven by many factors, not just the virus itself. For instance, the criminal justice system contributes to poor health outcome and adds to existing health inequalities. Income level, education, access to health care, and language barriers lead to poorer overall health in Latinos.
Prevention and treatment efforts must be tailored for Latinos if they are to be effective. We also need better surveillance, to understand the burden of disease in various Latino groups and target resources where they are most needed. We must understand how the epidemic affects all groups before we can know if our efforts to fight HIV work in the real world.
Due to the kind of data we gather today, we are most likely underestimating the barriers to care faced by marginalized groups. These studies focus their attention on the general population and often overlook key groups at higher risk.
Overcoming Health Inequality
The roots of health inequality are complex and embedded in past and current patterns of discrimination, stigma, and lack of opportunity. Decisions about how to address these issues must include those most affected, and should emphasize improvement in the care given to minorities by providers. Providers are key to making an impact on racial inequality and to improving the quality of life of people who are often overlooked by policymakers.
HIV presents a significant risk to health systems around the world because it is an infectious disease whose treatment is costly. More accurate statistics are needed to determine the number of existing and new HIV cases, which will inform the institutional response to AIDS. A clear overview of the epidemic will lead to better and more cost-effective interventions targeted to those most vulnerable. Assumptions based on inaccurate data can be misleading. For example, reductions in the number of people with HIV may be the result of effective interventions, but they may also occur due to a rise in uncounted deaths or to patients who drop out of care. Effective HIV surveillance must include demographic information, behavioral records, and the use of markers like viral load and CD4 counts.
High rates of incarceration in urban areas are likely a driving force of the epidemic, leading to higher infections among Blacks and Latinos, and the effect of incarceration on NYC HIV rates has particularly affected minority groups. But this association has only been widely studied at the national level. Studies of its effect in major cities have been too short and poorly done due to a lack of consensus on how to approach key populations.
We have made great strides in containing the HIV epidemic. In developing countries, foreign aid has been instrumental in stabilizing and even reversing existing health inequality. But more needs to be done to ensure the long-term success of any intervention. We need stronger monitoring and evaluation tools, a research agenda that addresses health inequality, and strategies to reach broader populations. Prevention and treatment approaches should use a combination of medical and behavioral strategies, with cost-effective ways to scale them up.
Improving economic conditions is critical to overcoming health inequality. For instance, higher incomes allows people to move to neighborhoods that have access to medical care, childcare, transportation, healthy food, etc. Saving for the next generation is also key, breaking the cycle of poverty by allowing people to finance their children's education, leading to better job opportunities and working conditions, as well as improving social status.
Scaling up more inclusive HIV strategies in NYC means creating stronger mechanisms for diagnosis, linkage to care, and adherence services. We must link public programs like Medicaid and ADAP with private health care, to ensure culturally appropriate interventions that lessen HIV health inequalities.
The success of current HIV treatment strategies has raised expectations among policymakers, providers, and researchers, who have envisioned the end of the global HIV epidemic in the near future. UNAIDS has set a major goal for 2020: 90% of people with HIV will know their status, 90% of those will be on treatment, and 90% of people on treatment will achieve viral suppression. This would at least triple the number of people who are currently virally suppressed. Attaining this goal would lead to extraordinary gains in health and also great savings, since it would lead to far lower rates of HIV transmission. Cost concerns are paramount as HIV treatment programs expand and health systems become overcrowded and underfunded.
A final thought: economic empowerment positively affects health status, so overcoming poverty remains a priority in the fight against HIV. Promoting higher standards of living and a stigma-free world will greatly benefit society in general.
Juan J. DelaCuz is Associate Professor of Economics at Lehman College in New York City.