Tag Archives: segregation

A Community Mobilizes to End Medical Apartheid

Hello readers, we are pleased to announce that the peer-reviewed journal, Progress in Community Health Partnerships, has published a piece about our campaign with Bronx Health REACH to end segregation in the delivery of health care services by teaching hospitals in New York. You can download a copy of the piece here. Feedback welcome! We are using every avenue at our disposal to get the word out about this urgent issue, including the very types of publications that health care providers and policy decision-makers are likely to peruse.

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Acknowledging Difference, not Defeat: A Racial Justice Perspective on the Medicaid Debate

This post, by Health Justice Director Nisha Agarwal and Staff Attorney Shena Elrington, also appears on the Race-Talk blog, Huffington Post, and Alternet.

The federal Medicaid program has become something of a policy piñata in the national discourse. Over the course of the past year conservatives have been asking, “is Medicaid real health insurance?” The public insurance program for low-income individuals has been criticized for not providing sufficient access to physicians, long wait times to see a physician when one can be accessed, and poorer quality of care once patients get in the door – all of which conservatives argue are reasons to dismantle the program altogether. If being on Medicaid isn’t much better than being uninsured, why bother spending tax dollars on it?

Meanwhile, a recent editorial in the New York Times offered unequivocal praise for the Medicaid program, pointing to a study conducted in Oregon that allowed researchers to compare the experiences of people who received Medicaid coverage to those who did not. According to the study, Medicaid recipients reported better health than the uninsured recipients  and were less likely to have medical bills sent to  collection agencies or forgo other obligations in order to pay for their medical care. Supporters of the public health insurance plan were therefore able to hit back against conservative naysayers and argue that Medicaid truly is a program worth preserving and expanding.

While the national debate lurches back and forth, we find a more complicated reality on the ground, in the low-income communities of color where we work to eliminate race- and class-based biases in the health care system. The uncomfortable truth is that Medicaid beneficiaries do often receive poorer quality of health care, particularly when it comes to accessing specialists. But to see this you have to look at how Medicaid beneficiaries fare vis-à-vis privately insured individuals, not the uninsured, which has been the focus of current debates.

For example, in  our work with Bronx Health REACH, a faith-based community coalition in the Bronx, we have seen how Medicaid patients seeking specialty services at major New York City hospitals are seen in separate—effectively segregated—facilities from their privately-insured peers, with longer wait times, less experienced doctors, and much less continuity and coordination of care. (You can read more about these problems in this monograph published by the Bronx Health REACH coalition and in this complaint we filed with the New York State Attorney General.)

Working with low-income parents, we have also seen how children with Medicaid have to wait for grotesquely long periods of time before they can get mental health treatment and special education evaluations, if they are able to access these services at all, and how elite institutions providing such services refuse to serve publicly insured populations despite the significant shortage of pediatric mental health providers in New York City.

Our experience thus seems to support conservative arguments to some extent: Medicaid beneficiaries do not have sufficient access to physicians, experience long wait times to see a physician when one can be accessed, and suffer from poor quality of care once they get in the doctor’s door, at least when compared with those patients who are privately insured.

Undoubtedly the current climate surrounding Medicaid makes it difficult for advocates to point out the lower quality of care Medicaid beneficiaries receive, for fear that any criticism of the program will serve as powerful ammunition for the other side to use. But acknowledging certain aspects of the conservative argument need not mean that advocates have to accept the entirety of their conclusions. Something else we’ve learned through our work is that Medicaid isn’t “bad” insurance per se. Rather, healthcare providers and institutions choose to treat Medicaid beneficiaries badly by discriminating against them with respect to the quality of care provided. Consider the Bronx example. Hospitals in New York City (and elsewhere) are not only reimbursed by Medicaid for providing patient care, they also receive over $1 billion through the Medicaid program for non-patient purposes such as resident doctor training – a funding stream so substantial that the New York hospital industry is fighting tooth and nail to keep it safe from federal budget cuts. Medicaid seems to pay hospitals very well, and yet these same hospitals choose to provide segregated and unequal care to Medicaid beneficiaries. Why?

As with many things, these bizarre dynamics cannot be understood without accounting for race, and for the fact that the vast majority of publicly insured individuals in New York City are black and brown. We have heard how top-flight specialists want to be able to choose the patients that they treat, which is invariably code for avoiding people of color who are perceived to be more “complicated” and “non-compliant.” Elite NYC hospitals eager to attract these specialists happily comply to doctors’ demands by giving them fancy facilities to see their preferred patients, while the Medicaid patients are separated out into “clinics”, where they are treated by a rotating band of doctors-in-training.

In addition to wanting to attract renowned specialists, the hospitals want to attract the “right” kind of patients – that is, wealthy, white, suburban patients. Behind closed doors administrators will openly argue that their “‘paying’ patients will not want to sit in the same waiting room as people on Medicaid,” so it is simply better for the hospital to segregate the two groups.

Worse still, these biases become a part of the culture of how medicine is taught, with students and residents working with Medicaid patients in the clinics learning very early on that some patients—the kinds of patients they get to practice on, the poor patients of color—are less worthy than others. Indeed, research has suggested that by the end of their medical education, student doctors actually become more biased than they were when they began medical school. These biases, whether conscious or not, permeate the medical system at both an individual and systemic level, affecting the quality of care that Medicaid beneficiaries receive.

From our perspective, the debate about Medicaid is less about left-and-right and more about black and white. The conservatives’ sleight of hand is to point to quality of care problems for Medicaid beneficiaries and to jump from there to the conclusion that the Medicaid program is to blame, which obscures the mediating role that institutional racism plays in ensuring poor outcomes for Medicaid patients. Meanwhile, supporters of Medicaid effectively erase race from the debate as well by closing their eyes to the many challenges Medicaid beneficiaries face in accessing high-quality health care, despite the fact that they are walking in the door with an insurance that research shows is pretty good. A more nuanced position would acknowledge differences in care without accepting defeat. It is not the Medicaid program that must be dismantled, but the biased attitudes and policies that lead Medicaid patients to get inferior quality of care.

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Mount Sinai’s Tisch Cancer Institute: New Building, Same Walls

This post is by Alyssa Aguilera, NYLPI’s Health Justice Community Organizer.

Late last month I attended my first Mount Sinai Community Roundtable – a monthly convening of various community stakeholders interested in the happenings of the Harlem-based academic-medical center. These meetings, according to Mount Sinai’s own Community Service Plan, are held to “keep its pulse on the needs of the East Harlem and Central Harlem communities”. A worthy effort indeed, I was interested to see how the hospital would approach the invariably difficult town-gown relationship between a highly-touted medical center and its surrounding neighborhood, which despite proximity still remains a medically underserved community.

Last month’s meeting was to focus on the new Tisch Cancer Institute – “a state-of-the-art, patient-oriented, comprehensive cancer and research facility” slated to open in early 2011. On hand to explain the Institute was its director Dr. Steven Burakoff who led the group through a presentation highlighting the research, education, and care that would be provided at the Institute.

Funded in part by a $40 million gift from James and Meryl Tisch, the construction of the Institute is part of a larger expansion plan currently in motion at Mount Sinai. This initiative, led by Mr. Tisch, is being called The Campaign for Mount Sinai and is an aggressive and ambitious capital campaign aiming to raise $1 billion in private donations to improve the entire medical center.

What I found quite interesting in both the presentation and when perusing the Mount Sinai website, was the emphasis on “translational medicine” and the creation of “institutes” where this practice will be honed. Translational medicine, although multi-faceted, basically promotes the idea that “new treatments and research knowledge [should] actually reach the patients or populations for whom they are intended and [be] implemented correctly.”[1] So for example, the Tisch Cancer Institute will house both the research and treatment of cancer allowing for mutual access between researchers, practitioners, and patients that will hopefully produce accelerated positive results for all those involved.

Mount Sinai is planning to create institutes for 14 different medical areasThe Black Family Stem Cell Institute, Friedman Brain Institute, Experimental Therapeutics Institute, etc. – and all are part of this ten-year expansion project.

In addition to the presentation on the Tisch Cancer Institute, the community roundtable also featured Professor Lina Jandorf, Director of Cancer Community Outreach in the Department of Oncological Sciences. She spoke about her work to reduce ethnic and racial disparities by improving education, screening and treatment protocols for communities of color in Harlem. Her own research emphasizes the need for this type of work. She writes:

Cancer mortality and incidence rates among minorities in [East Harlem] are 30% higher than elsewhere in New York City (NYC). For example, prostate and colorectal cancer incidence among adults aged 45-64 years living in this community is significantly higher than the average for NYC. Women in [East Harlem] are diagnosed with breast cancer at later stages of disease than are women from other NYC neighborhoods. Malignant neoplasms are the second leading cause of death in [East Harlem] after heart disease, with an age-adjusted rate of 147 per 100,000 when compared with 91 per 100,000 for the rest of NYC.[2]

The lack of access to cancer prevention and treatment in low-income communities of color is unfortunately no surprise and I am happy to see that Ms. Jandorf and her colleagues at Mount Sinai are engaging in programming to help understand and ameliorate this somber public health reality. However, the lingering question I had throughout the presentation, and asked of Dr. Burakoff and Ms. Jandorf themselves, was this: It is great that the Tisch Cancer Institute is being constructed in a community so desperately in need of the care it provides, but what is Mount Sinai doing to grant access to the Institute for their neighbors many of whom are on Medicaid, are under-insured, or uninsured?

Their answer was not as straight-forward as I would have liked. They mostly just pointed to the community programs that are already available to the public. Dr. Burakoff said something interesting though, he said that as a hospital once they screen patients and detect cancer they have a responsibility to treat them. A vague answer, but I can assume that if the Institute had any plans to actually screen and treat low-income patients, they would have mentioned it at that time. Though just to be sure, I called a few days after the presentation to inquire about breast cancer treatment for a Medicaid beneficiary and was told they could be seen in the clinic setting, not the Institute itself.

So it seems more than likely that Mount Sinai will continue to deny access for low-income patients to the highest quality of care their facilities provide. They will regulate low-income patients to the clinic system, where they will get a lower quality of care (more on our work to end the two-tiered system of care in NYC academic-medical centers here), and the staggering health disparities in communities of color like East and Central Harlem will persist. Undoubtedly though, these new initiatives by Mount Sinai will allow them to rise in the ranks as one of the “best” hospitals in the country – well, for those who are lucky enough to have good private insurance.

Funny enough, Mount Sinai’s expansion project and institute model is all about breaking down walls: between the hard sciences and clinical medicine, between clinical medicine and patient outcomes, and between specialty areas in an attempt to tackle comorbidities often present in patients with chronic illness.

But despite millions of dollars, the recruitment of top faculty, and state-of-the art facilities, one big wall will still remain for low-income New Yorkers seeking cancer treatment at the Tisch Cancer Institute – the ability to afford it. And sadly, this treatment is one thing many New Yorkers cannot afford to live without.


[1] Woolf, Steven H., MD, MPH. “The Meaning of Translational Research and Why It Matters.” Journal of the American Medical Association 299(2) (2008): 211-3.

[2] Landorf, L and Fatone, A. and Borker, P.V. (2006) Creating alliances to improve cancer prevention and detection among urban medically underserved minority groups: The East Harlem Partnership for Cancer Awareness. Cancer. 107 (8). pp. 2043-2051.

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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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Making Separate and Unequal Illegal

For those of you who’ve been following our campaign to eliminate separate and unequal health care delivery in New York City’s academic medical centers, we’ve got some good news!  This morning legislation was introduced in the New York State Senate that would make it explicitly clear that private academic medical centers in New York City must provide care to all patients in the same place at the same time.  In other words, they are not allowed to steer Medicaid patients to one section of the hospital, where they provide them with lesser quality of care from privately insured patients, who are seen in another part of the hospital.  To read the text of the bill, click here.  A clearer summary of and justification for the legislation can be viewed here, in what is called the “sponsor memo.”  We will keep you posted as this campaign progresses!

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Run On and See Where It Ends: Fighting to Make Health Equality a Reality

This post, by Health Justice Director Nisha Agarwal, has also appeared on Race-Talk, Huffington Post and AlterNet.

Saturday morning, April 17th, the auditorium of Junior High School 22 in the Bronx was crowded with community residents who had gathered for a town hall meeting. Health care reform had passed, but these folks knew that their problems were not over. Ensuring that most Americans have health insurance, while important, will not be enough to eliminate the racial and ethnic disparities that have been dyed deep into the U.S. healthcare system and that reveal themselves, vividly, in the Bronx.

To save black and brown lives and to improve the vibrancy of those lives requires looking beyond access and focusing on quality. It requires, among other things, an examination of the practices of major health care institutions, which deny low-income people of color the highest quality of care they have to offer even when those people have health insurance.

The specific issue that community members had gathered about is this: in New York City, prominent private hospitals–facilities like New York-Presbyterian, Montefiore Medical Center, Mount Sinai–operate two different systems of care for patients with the same kinds of health problems but with different types of insurance. There are, for example, cardiology “clinics” for patients with Medicaid, a public insurance program, and there are cardiology “faculty practices” for patients with private insurance. Sometimes the clinics are right next door to the faculty practices, but Medicaid patients won’t be allowed into the faculty practices, and privately insured patients are not sent to the clinics.

What is more, the hospitals allow valuable and finite resources to be allocated unequally between the two systems of care. For instance, clinics often do not have enough financial support from the hospital to perform basic care coordination tasks like sending notes back to the patient’s primary care physicians, while faculty practices often receive administrative and other forms of support so that such tasks are routinely able to be done.

More significantly, board certified faculty physicians, the top docs, spend only a fraction of their time in the clinics–a mere half a day a week for four months out of the year in one case–even though they are required by law to spend the bulk of their time supervising resident doctors and caring for patients in the clinic setting instead of in the faculty practice. Hospitals do nothing to shift the balance and, as a result, Medicaid patients do not have a single, board-certified physician who is ultimately responsible for their care, whereas privately insured patients do. Here is a chart summarizing some of the main inequalities:

The impact of these differences are felt on the bodies and backs of low-income patients. At the town hall meeting, Medicaid beneficiaries spoke of being bounced from one doctor-in-training to the next within a fragmented clinic system, where fingers and toes were almost amputated and cancer remained undiagnosed until dangerously late. And they spoke of how these outcomes were not race neutral. In New York, people of color are far more likely to have public insurance than whites, which means that when hospitals create two systems of care based on insurance they are also perpetuating a de facto segregation based on race. (For more background and helpful stats on this issue, please see this excellent monograph on medical apartheid in New York City by the Bronx Health REACH coalition, the group that first brought this problem to light.)

Representatives of health care institutions have argued publicly that community residents are missing the point. The source of the problem, they claim, is with the Medicaid program and not with the hospitals. Doctors’ offices are reimbursed at extremely low rates through Medicaid and therefore can’t afford to see publicly insured patients in their faculty practices. The clinics have been set up to provide an avenue for care that otherwise wouldn’t exist.

But it is the hospital representatives who are missing the point. The provision of care to Medicaid patients is not something hospitals are choosing to do out of the goodness of their hearts. Under federal law, hospitals are required to open their doors to Medicaid beneficiaries, and provide them care without discrimination, in exchange for accepting millions of dollars of government funding to modernize and upgrade their facilities.

Moreover, while Medicaid reimbursement rates for doctors’ offices are very low, they are much higher for clinic-based services. In order to integrate care, hospitals could simply shift their resources to the clinic and ensure that all patients, public and private alike, are seen in that setting, instead of siphoning off the privately insured patients to the faculty practices. The increased resources and mixed patient population would help ensure that the quality of clinic care would improve dramatically and that this high-quality care would be accessible to all on equal terms.

Of course, hospitals are choosing not to do this and, given the dubiousness of the financial arguments, one is left to presume that their motives are more suspect: one cannot attract wealthy, white patients from the Upper East Side and Westchester if those individuals will have to sit in the same waiting room as people of a different class or race. The fight to integrate our health care system and to reduce racial and ethnic health disparities is therefore going to be just as messy as the historic battles to integrate our educational system or our housing. But fight is what Bronx residents will do, even in the face of uncertainty and resistance. As one faith leader said at the town hall meeting, quoting a song from the civil rights movement of deep South, we must “run on and see where it ends.”

To learn more about Bronx residents’ efforts to eliminated segregation in New York City’s healthcare system, please click here or visit the website of Bronx Health REACH.

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Place Matters

A recent article in the American Prospect about the De-Facto Segregation of Health Care has been getting a lot of attention, at least in the media that we read, and for good reason.  It points out the uncomfortable truth that race matters in health care, which means, in part, that place matters too.  As the article notes:

Ongoing de-facto segregation has a profound effect on the quality of care to which people of color — insured or otherwise — have access. While the health-care bills being debated in Congress would expand access to and quality of care for people of color, ultimately racial health disparities can’t be eliminated without better distribution of health resources.

Consider a community in which we do a lot of work: Southeast Queens.  Take a look at this map, lifted from a website developed by our friends at the Opportunity Agenda:

SEQ

This is a slice of Queens that represents the dividing line between the Northwest and the Southeast of the borough.  The darker an area is shaded, the higher the percentage of people of color living in that area.  De-facto segregation, anyone?  Now check out those little plus signs, which represent hospitals.  Notice how few–i.e. none–of them are actually located in the darker-shaded portion of the map.  And, in fact, one of the hospitals right on the border recently closed — a common occurrence in communities of color across the country.

Now compare the availability of hospitals and the demographics on the Southeast side of Queens to the east side of Manhattan:

bedpanalley

The absence of hospitals in Southeast Queens, and their over-abundance in white communities of the city, would be less of a problem if people in the area could actually access the primary or preventative care they need to prevent hospitalizations and trips to the emergency room.   But, of course, the lack of hospitals isn’t the whole story.  The New York State Department of Health recently issued a report on health care services in Queens, which notes that Southeast Queens has the lowest ratio of doctors to population in the entire borough.  There are 48 full-time equivalent (FTE) primary care doctors per 100,000 population in Southeast Queens compared to 132 FTE’s per 100,000 in the Flushing/Clearview area.  This report also indicates that there are 75 primary care clinics in Queens, but of the 75 clinics listed only 40 could be confirmed as primary care clinics available to members of the community at large.  Several of the clinics are for special populations only (e.g. children, women), and of the remaining 40 primary care clinics, only 22 are located in Southern Queens.

Pointing out geographic and resource disparities like this isn’t just a complaint about who-gets-what; it is a matter of life and death for many.  As the American Prospect piece notes:

Even when people of color are covered [by insurance], their access to quality care is diminished heavily by ongoing segregation and poverty; in nonwhite neighborhoods, it’s simply harder to find a primary provider than it is in white neighborhoods. The facilities that exist are often of lower quality and lack the resources institutions located in primarily white areas have. What this means is that even when minorities are covered by health insurance, they’re less likely to have quality care and less able to afford the associated out-of-pocket expenses — and the results are staggering.  Children born to black women are more than twice as likely to die within their first year of life as are children born to white women. This disparity is unaffected by income or education level.

So, what can be done?  Well, many things, but in Southeast Queens the most immediate action is being taken by a community coalition we work with called Southeast Queens United in Support of Health Care (SQUISH).  When the State Department of Health published its report, it also announced that $30 million would be available in grants to develop health care services in the borough.  SQUISH is reaching out to elected officials, community residents, local health care providers and the media to raise awareness about the need for some of that funding to be directed toward Southeast Queens.  For a list of SQUISH’s asks, check out their talking points.  Because green shouldn’t always follow white, and where you live shouldn’t be one of the primary determinants for how soon you die.

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