President Barack Obama’s Patient Protection and Affordable Care Act is an important step in eliminating health disparities, but this legislation does not go far enough. At Breast Cancer Action, we’ve always been committed to the development and implementation of legislative solutions that will insure universal access to quality health care for all people living in the United States. The Affordable Care Act is not that legislation.
But the legislation, which will deliver care to over 30 million uninsured Americans, is without a doubt ground-breaking. The legislation, which goes into full effect by 2014, will provide insurance for more than half of the 49.1 million nonelderly people in the United States who were without health insurance in 2010. There are some facts we know about the faces of the uninsured in this country. She or he is a young adult of color from a low-income family in which there is at least one working adult. Almost half of the uninsured have a chronic disease like cancer. And the lack of adequate health insurance means patients are less likely to receive adequate, timely care.
The data continues to show that people of color have worse health outcomes than their white counterparts even among those who have health insurance. Gaining access to health care and medical treatment is an important step to better health, but access alone will not eliminate the widespread health inequities that have been persistent for decades. Equal access to education about ways to take better care of yourself is not a silver bullet that ensures good health, but neither is leveling access to health care.
Inequities in breast cancer incidence and outcomes are well documented but not well understood and are often inadequately addressed. We know that while white women have a higher incidence of breast cancer, African American and Latina women are more likely to die from the disease. A complex interplay of health care and social factors can explain these differences in breast cancer outcomes.
We know that only a relatively small percentage of deaths could be avoided, about 10–15 percent, with the availability of quality medical care. Current health care takes as its primary focus the goal of reducing the severity of disease that already exists, yet addressing the social factors of where we live, work, and play can potentially prevent disease from occurring in the first place.
These social factors, also known as the social determinants of health, are risk factors that are determined by the social conditions in which we live and work and in which we make choices about how to live our lives. Prevailing narratives about individual responsibility and smart consumer choices continue to miss the mark because they fail to take into consideration a simple reality that informs how people make health decisions: “The choices we make are shaped by the choices we have.”
The physical and social environments in which we live and encounter limit or expand our options for improving health and avoiding disease. This understanding should be reflected in policies aimed at both personal and community responsibility to truly change the inequities we see in disease incidence and outcome.
Reynolds, et al., notes, “Geographic location is one of the strongest predictors of breast cancer incidence.” Geographic concentrations of poverty, including fewer options for high-quality education, fewer job opportunities, substandard housing, racially and economically segregated neighborhoods, and a lack of community and social support are all critical factors in determining actual standards of health. Unsurprisingly, these are all characteristics also of an unhealthy neighborhood and unhealthy neighborhoods are disproportionally poor communities of color.
Compounding this burden, early childhood experiences and social disadvantage have long-term effects on health outcomes through one’s life course. Social disadvantage may not last a lifetime, but research shows that cumulative effects at critical windows of development — in utero, early childhood, and adolescence — can affect health outcomes and potential for increased disease development over one’s life course. For example, lead poisoning in early childhood, from exposures to lead-based paint in substandard housing, can cause permanent neurological damage.
Simply advocating for greater access to health care will not “fix” poor health outcomes — communities also face barriers once they have access to health care. Language barriers, low health literacy, discrimination, and a long history of medical mistreatment are just some of the barriers to receiving high-quality health care.
- Language/Cultural Barriers: Providers are not prepared to serve the multicultural and multilingual society that has been evolving over the last century. Nearly 14 million Americans are not proficient in English, and population growth in the United States is fastest among minorities as a whole. The burden of education lies on providers to provide. In this case, that means offering culturally appropriate medical care with interpretation services if necessary.
- Health Literacy: Another obstacle to overcome that many people face once they are able to access health care (provided they have adequate health insurance), is knowing how to use and access medical services. Not understanding how to navigate the insurance and medical system results in patients unknowingly refusing recommended services, not following treatment protocols, all of which often culminates in delays in seeking care.
- Racism/Discrimination: Communities of color continue to face prejudice and stereotyping by health care providers. There is limited access to and availability of providers who are culturally sensitive and able to understand and relate to cultural beliefs and traditions that are not their own. Currently, there are only three oncologists in the United States who are of Native American descent and 184 who are of African American descent. A lack of physicians who are not able to create a culturally sensitive space can lead to lower quality medical care and decreased provider-patient trust and communication.
- Mistrust of medical community: There is a long history of abuses in medicine via the withholding of medications to study the progression of untreated diseases, such as the Tuskegee syphilis study, involuntary sterilization of women of color, and unauthorized research of blood samples of Native American tribes. This history of exploitation and medical mistreatment and the resulting scars that remain have created a legacy of mistrust. Poorer communities, predominately communities of color, have experienced numerous cases of medical mistreatment as recently as 1990. Studies show that trust in medical providers establishes a consistent and stable doctor-patient relationship which in turn is an important in step in accessing care. The importance of trust works in both directions as the possibility that a provider might disengage with a patient who is mistrustful and noncompliant can potentially lead to providers who are less likely to provide more vigorous services.
A combination of obstacles faced in both the social context of how we live and the barriers to high-quality medical care once we have access to health care result in the inequities we see in the health outcomes of communities of color. If we want to impact both the prevention and the severity of disease occurrence, we need to focus on interventions outside the health sector, which are more likely to have an impact on disease prevention, and on health care policies, which will have a stronger effect on the severity of disease.
We all deserve an equal opportunity to choices that lead to good health. It is time to dispel the myth that health is something we get at the doctor’s office. Health begins in our neighborhoods, schools, jobs; it begins in the air we breathe and the water we drink.
We need policies that address both the social determinants of health — the social factors that influence where we live, work and play — and the barriers that people face when accessing health care.
We have come a long way in understanding the ways in which where we live, work, and play affect our health, but our work is far from done. Our understanding of these social factors has not been translated into programs that eliminate health inequities. We need strategic partnerships and collaborations across disciplines that will include health and health equity in all policy, from land use and city planning to economic development and beyond.
This article is based on a BCAction factsheet titled “Health Is Not Just Health Care,” available soon here.