Monthly Archives: October 2010

Knowledge is Power

This post is by Julina Guo, a Columbia University student and intern for the Health Justice program.

Disparities in health care impact thousands of lives every day.  One of the biggest challenges in the fight for equal health care is lack of awareness. We can help ourselves to become more knowledgeable and informed so that our own voices are heard in the healthcare debate. Below is a list of notable works that have highlighted pressing issues in health care equality as it relates to race, immigration, gender, and socioeconomic status. Although numerous reports and research studies have been published on the topic of health disparities, we focus in this bibliography on more journalistic works that tell a story of how health disparities impact real human lives.  We hope you find it useful!  And if, in the course of your travels through this literature, you discover other wonderful texts you’d like to share, please email us  (healthjustice@nylpi.org) and we’ll add them to this bibliography.  Thanks!

Abraham, Laurie K. 1993. Mama Might Be Better Off Dead: The Failure of Health Care in Urban America.  Chicago: University of Chicago Press.

Abraham examines the real impact of unequal health care on the Banes, a low-income African American family, in Chicago. Through stories of inadequate medical attention, visits to the emergency room, struggles to qualify for Medicaid, and other misfortunes that befell this family, Abraham depicts the need for health care reform through the eyes of the poor.

Byrd, W. Michael and Linda A. Clayton. 2001. An American Health Dilemma: Race, Medicine, and Health Care in the United States, 1900-2000. New York: Routledge.

An extensive chronicle of the African American experience within the larger context of health care in the United States and global racism in the last 2,000 years. Byrd and Clayton posit that that the denial of quality health care to African Americans originated in colonial era, a tradition that quickly transformed into a social norm to deprive African Americans of their rights.

Fadiman, Anne. 1997. The Spirit Catches You and You Fall Down:  A Hmong Child, Her American Doctors, and the Collision of Two Cultures. New York: Farrar, Straus, and Giroux.

This book describes the emotional and medical tragedy of the Lee family, a refugee Hmong family from Laos, in the 1980s. When their child Lia Lee was diagnosed with severe epilepsy at an early age, the Lees tried to negotiate with doctors in a culturally mismatched setting only to find tragedy.

Hilfiker, David. 1994. Not All of Us Are Saints: A Doctor’s Journey with the Poor. New York: Ballantine Books.

Hilfiker documents his experiences as a physician in a Washington, D.C. ghetto. In 1983, Hilfiker moved his family into the Christ House, a medical recovery shelter for homeless men, and later founded an AIDS shelter in 1990. This moving narrative depicts vivid personal encounters with a ravaged health care system divided by race and poverty.

Jones, James. 1993. Bad Blood: The Tuskegee Syphilis Experiment. Free Press.

An analysis of experimentation by the United States Public Health Service from 1932 to 1972 on poor African American men infected with syphilis. Jones argues that by purposing deceiving and depriving the men of medical treatment, doctors perpetuated an ugly symbol of racism that has survived to this day.

Smith, David B. 1999. Health Care Divided: Race and Healing a Nation. University of Michigan Press.

Telling first-hand accounts and statistical evidence of inequality in health care outcomes move this narrative as it details changes from the 1920s to the present. Smith examines efforts by the federal government and courts over the years, giving special attention to the 1964 Civil Rights Act in the health care arena.

Vigen, Aana Marie. 2006. Women, Ethics, and Inequality in the U.S. Healthcare: “The Count among the Living.” Palgrave Macmillan.

A perspective of the disparities of healthcare as seen through African American and Latina women with breast cancer. Vigen crafts their stories in the context of current healthcare research, giving a voice to those marginalized in the healthcare debate.

Washington, Harriet A. 2006. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: Harlem Moon.

Washington examines the history of unethical medical experimentation of African Americans. She details practices in the colonial era, following the introduction of Darwinism, social eugenics, and the Tuskegee Experiment

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Community Input When a Hospital Closes

As we have written about before, the community of Southeast Queens has long experienced some of the worst health outcomes in New York City across a variety of measures.  No doubt, the shuttering last year of both Mary Immaculate Hospital in Jamaica and St. John’s Queens Hospital in Elmhurst has only placed additional strains on the already insufficient healthcare infrastructure in Queens, and on Southeast Queens in particular. These and other hospital closures occurred without any input from community members – the very people who utilized the services that these hospitals provided were left unable to make their voices heard on how the closure would affect them, and on what healthcare services they thought were critical for the community.

In order to ensure that communities affected by future hospital closures would have at least some voice in the process, Assembly Member Rory Lancman and State Senator Shirley Huntley introduced the Hospital Closure Planning Act. This original bill would have required the Commissioner of Health to hold a “public hearing” within 30 days of a proposed hospital closure in order to assess the impact a hospital closure would have on the area it serves.

Despite the overwhelming support in the legislature, as well as advocacy in support of the bill from Southeast Queens United in Support of Healthcare (SQUISH) among others, Governor Patterson vetoed that initial bill.  Now, after negotiating with DOH and the Governor–and, importantly, after the closure of St. Vincent’s in Manhattan, which, in contrast to the hospital closures in Queens garnered significant and vocal opposition from a notably wide range of politicians and stakeholders –the Governor signed a revised version of the bill.

As Assembly Member Lancman said last week, “The government has to, at least, make an effort to let communities affected by a hospital closure know how their healthcare needs will be addressed. We may not be able to stop a hospital from closing, but we ought to be able to measure the impact of that closing and come up with a plan for serving the residents who relied on that hospital for healthcare services.”

The revised bill requires the Commissioner to hold a “community forum” within 30 days after a hospital closure to hear from affected community members.  After the forum, the Commissioner must also release a written report on the anticipated impact of the closure to the community, as well as the Department of Health’s plans to mitigate the negative effects of the closure and to ensure continued access to healthcare.

To be sure, the Act is only a small first step in making sure that low-income communities of color most in need receive equal access to quality health care. Nevertheless, it is an important one in that it begins to recognize the community’s role in health planning.

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