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.
Tag Archives: civil rights
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.
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 (firstname.lastname@example.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
Below is a press release we just issued, announcing a major campaign victory!
FOR IMMEDIATE RELEASE
After advocacy groups’ campaign on behalf of parents of kids with special needs, NYU designates providers who will accept Medicaid and,Child Health Plus
New York, NY, June 1, 2010 – New York Lawyers for the Public Interest (NYLPI), a civil rights law firm whose practice includes health justice and disability rights, along with co-counsel, Cleary Gottlieb Steen & Hamilton LLP and LatinoJustice/PRLDEF, announced today that they successfully campaigned for the Child Study Center of the New York University Medical Center to designate certain doctors who will accept Medicaid and other health insurance. Previously, NYU’s Child Study Center had a cash-only policy for patients, which meant that they did not accept any insurance at all.
As part of the advocacy campaign, which included threats of litigation, a group of parents represented by NYLPI and co-counsel met with NYU leadership and explained how the cash only policy impacted them and the thousands of other families who were unable to access the Center’s state-of-the-art evaluations and medical services for children with disabilities. These services are in extremely short supply across New York City, and without access to the facility at NYU’s Child Study Center, many low-income and minority children were unable to obtain the medical attention they needed.
“NYU has taken a step in the right direction towards eradicating a few of the many institutional barriers keeping low-income New Yorkers from accessing quality health care,” said Nisha Agarwal, director of NYLPI’s Health Justice program. “We still have a long way to go to ensure that all children, regardless of their financial circumstance or background, have equal access to high-quality mental and behavioral health services, but this is one step forward.”
As a result of NYLPI’s action, the Child Study Center has announced that it will designate certain providers who will begin accepting fee-for-service Medicaid and Child Health Plus. Before this change, children and their parents who could not afford to pay cash for evaluations and medical services often went without necessary and recommended medical treatment for serious illnesses.
According to Lorraine Ali, “No mother wants to be told she can’t provide her child with the medical attention he needs. Now I can finally get my son to a doctor who can treat him. It’s the best news we’ve gotten in a long time.”
Although NYU’s Child Study Center has agreed to take the important step of accepting fee-for-service Medicaid and Child Health Plus, it does not have plans to accept any Medicaid managed care plans. “There continues to be an acute shortage of evaluative and medical services for children with psychiatric disabilities in New York City,” said Kelly McAnnany, director of the Opportunity & Access Program at NYLPI. “We will continue to work with providers and with state agencies to open the doors to quality health care and educational opportunity for low-income children with disabilities.”
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!
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.”
When it was published in 1981, This Bridge Called My Back: Writings by Radical Women of Color was a vermilion ink bloom on the crisp white wedding dress of the U.S. feminist movement. It was meant to be shocking. This anthology of prose and poetry by Black, Latina, Asian, Native American women was the first to express loudly, clearly, bilingually that the “sisterhood” could not be colorblind. Women of color are not the same as white women. They experience America differently. “I’ve had enough,” Donna Kate Rushin wrote in The Bridge Poem:
I’m sick of seeing and touching
Both sides of things
Sick of being the damn bridge for everybody…
I explain my mother to my father my father to my little sister
My little sister to my brother my brother to the white feminists
The white feminists to the Black church folks the Black church folks
To the ex-hippies the ex-hippies to the Black separatists the
Black separatists to the artists the artists to my friends’ parents…
I’ve got to explain myself
It is an apt metaphor, woman of color as bridge. Always liminal. Permanently negotiating. A migrant between gender and race. That is what makes us different: we can never pick a side.
And here is another thing about bridges: they have to be strong. According to a recent report by the Women of Color Policy Network at NYU, Black and Latina women are disproportionately more likely to be poor, have trouble paying the bills, be worried about putting food on the table, and express concern about the accessibility of health insurance than their white counterparts, but they are among the least likely to benefit from the billions of dollars in stimulus funding being doled out to improve economic well-being in this country. However, I think it would be a mistake to view the women of color who face these challenges as passive “victims” of intersecting layers of oppression.
When I sit in church basements in the South Bronx, strategizing with a local community coalition, the vast majority of people I am talking with are women – women of color. The same is true of the immigrant rights organization I work with in Brooklyn. You cannot begin to comprehend the fight that is in the mothers I represent, who do daily battle with the health and education systems on behalf of their children. The foot soldiers of our modern-day civil rights movement are women of color, just as they were a generation ago, when women outnumbered men two-to-one in the local organizations feeding the Mississippi freedom struggle.
In a way, it is quite stunning that the group most disadvantaged within the socio-economic framework of American society would, historically and currently, be its most vital force for democracy. When historian Charles Payne interviewed civil rights activists to understand this trend in the context of Mississippi – for his masterful book, I’ve Got the Light of Freedom, which everyone must read – he found a few explanations. One had to do with the operating style of some of the most effective grassroots organizations from that period, such as the Student Non-Violent Coordinating Committee.
Instead of duplicating gender-biased, hierarchical leadership structures of earlier civil rights groups, SNCC was “structurally and philosophically open to female participation in a way that many older organizations would not have been.” Another factor was the inherent liminality of women of color, or “the fact that historically Black women have had to adapt to so many different expectations and pressures they became relatively open to new situations.” In other words, the ability to see and touch both sides of things could be an engine for liberation as much as it was a source of frustration.
I would like to see today’s social justice movements tap into this creative energy even more effectively than we are. Certainly, there are innovative grassroots groups that support and encourage women of color leadership, but as one moves higher and higher into the ranks of major social justice organizations in the United States, we see fewer and fewer of the women who are so prevalent on the ground. Perhaps this means we need to re-think our organizational structures and unpack the visible and invisible barriers they may impose to advancement by women of color, particularly those without class privilege. I would also like to see women of color band together more effectively and harness our world-changing potential. Yes, we have to work harder, longer, better, louder. But that may be the source of our strength as much as it is a liability:
The bridge I must be
Is the bridge to my own power
I must translate
My own fears
My own weaknesses
I must be the bridge to nowhere
But my true self
I will be useful
Yesterday afternoon advocates from civil rights organizations across the country were invited to a meeting with Tom Perez, the newly confirmed Assistant Attorney General for the Civil Rights Division at the U.S. Department of Justice (DOJ). The purpose of the meeting was to discuss enforcement of Title VI of the Civil Rights Act of 1964 — a law that has been called the sleeping giant of the civil rights legal pantheon. The fact that the meeting was happening was symbolic of the change in attitude at the Civil Rights Division of DOJ after the 8 years of the Bush Administration. Earlier in the week, there was a meeting with language access advocates from across the country as well. “DOJ is back in the civil rights business,” according to Tom Perez.
What exactly this will look like remains to be seen, but here in the Health Justice program we are cautiously optimistic. For our work, having the federal government willing to engage in a little bit of oversight and enforcement, or simply issue guidance on critical issues related to health disparities, could have a ripple effect across the health care industry. It also opens up an entirely new venue of advocacy–the federal government–which had been effectively closed off to us for the past 8 years. We’ll be working with our community partners to figure out what to do and how – stay tuned!
This weekend the New York Times reported on a new study which finds that kids on Medicaid are four times more likely to be prescribed antipsychotic drugs than their privately insured counterparts, and often for conditions for which the drugs are not FDA approved such as A.D.H.D. and conduct disorders. These drugs may not only have significant psychological impacts on the children who take them, but they also cause long-term physical harm. This is terrible no matter what, of course, but let us be very clear about what we are talking about here. In places like New York City, where African-Americans and Latinos are 3.5 times more likely to be on Medicaid than whites, the kids we are talking about are black and brown.
The children who are being systematically over-medicated and denied high quality mental and behavioral health services are disproportionately young people of color. What we are talking about, then, is race even if all but the most oblique reference to it has been scrubbed from the lines of the mainstream media coverage.
Let us also be clear about how this may be happening. The Times piece implies that certain problems with the Medicaid program, such as low reimbursement rates for therapy, contribute to the over-medication of children by creating incentives for doctors to prescribe antipsychotics or by reducing the availability of psychiatrists who accept Medicaid, thus funneling low-income kids to non-specialists who are more likely to provide treatment through drugs. This may very well be true, but let us unpack these dynamics as well from the racial justice tip.
In New York City, where I work, there are large, well-respected institutions providing high quality mental health services for children that refuse to accept Medicaid patients ostensibly because they don’t pay that well. This can be viewed as a rational dollars-and-cents reaction to an inadequate Medicaid system, but when you consider the close relationship between insurance and race, it starts to look like a modern version of Whites Only. Such policies become all the more difficult to swallow when you compare them to the approach of some community-based health care providers that also exist in the city and manage to make mental health services available effectively and equitably.
The directors of clinical services at these community health centers will tell you about how they’ve figured out their administrative and billing infrastructure so they can work around some of Medicaid’s challenges to provide high quality mental health care to all patients, regardless of their insurance. Providers like these fight alongside consumer advocates to preserve Medicaid and make it better because they recognize how critical it is to the lives of their patients. They don’t retreat from the system or take shortcuts, hoping that poor kids of color and their mental health problems will just go somewhere else. Indeed, they bear responsibility for their colleagues at other institutions, who disguise their discrimination in the form of a “rational” economic calculus.
You can expect to hear more about the doping of America’s children in the coming year, as more studies are released and blue-ribbon policy panels convened to address the problem. What you probably won’t see are many efforts to write race into the story or the solution. That is our job as racial justice advocates: to read between the lines and move in from the margins.
This post, by NYLPI’s Health Justice Director, originally appeared on the blog of the National Campaign to Restore Civil Rights.
Every person who reads this likely speaks English, and speaks it well. Whether we are people of color, people with physical disabilities, members of a religious minority, women, gay, working class or poor, we stand with the vast majority of America in that we enjoy “English privilege.” Practically speaking, English privilege means this: For over 24 million people in the United States, it is difficult and sometimes impossible to get jobs, hold jobs, feed their families, vote in an election, be on a jury, make doctors’ appointments, take medication, use the courts, receive an education, get a home, keep a home—basically, participate in all of the ordinary and extraordinary features of American life—because they do not speak English.
Consider the experience of María Angela C., a Spanish-speaking woman from New York City who is in the process of learning English but hasn’t mastered it well enough to understand complicated health information. One day, her 5-year-old son broke out in hives due to an allergic reaction. She rushed him to the doctor, who wrote her a prescription but did not explain how to take the medication. When María Angela went to the pharmacy to fill the prescription, the pharmacist also failed to explain how to take the medication and handed her a bottle with instructions in English only. María Angela took the bottle home, opened it and saw a pink liquid that resembled “pepto,” so she surmised that the medication should be administered orally. After her son took a spoonful, however, he reacted with extreme disgust, and María Angela became nervous. She asked a neighbor to translate the label and learned that the medication actually had to be applied topically. María Angela was devastated. Her son risked another allergic reaction, or worse, due to the fact that the health care delivery system that she encountered operated in English only, and she did not (yet) have the English-speaking ability to navigate it safely.
María Angela and her son faced a barrier to equal health access, to a basic human need, that the rest of us take for granted. Though many Americans have felt powerless and overwhelmed in the U.S. health care system, most of us have probably not felt silenced – quite literally unable to ask for or receive help because of the language we speak. Fortunately, civil rights laws are in place to break this silence. Title VI of the Civil Rights Act of 1964 prohibits discrimination on the basis of national origin, which includes language. In the health care context, this means that hospitals and pharmacies must provide interpretation services and translated medication labels to ensure that individuals such as María Angela can access health services with the same hope as the rest of us: that it will improve well-being, not further compromise it. Unfortunately, the Supreme Court has, in recent years, begun to interpret the law in such a way that this right to equal access does not have an adequate remedy. In the 2001 decision of Alexander v. Sandoval, a case about an English-only amendment to the Alabama state constitution, the Court held that private individuals cannot sue in federal court for violations of Title VI unless they can show that they were the victims of intentional discrimination – that is, if they can point to something like a “Whites Only” sign on the front door of the pharmacy.
Sandoval put the kibosh on virtually all federal litigation under Title VI in the health care arena, among many others. Advocates have sometimes been able to work around the problem. For example, our Health Justice Program (HJP) represents Make the Road New York, a Latino community-based organization in New York City, and has successfully approached government agencies such as the state Attorney General’s office to compel investigations of and settlement agreements with national chain pharmacies that do not provide interpretation services and translated medication labels for their non-English speaking customers. We have also drafted and lobbied for the passage of language rights laws that would compensate for the erosion of civil rights protections at the federal level. In fact, this morning, New York City’s Mayor Bloomberg signed the Language Access in Pharmacies Act, which will ensure that, in the future, María Angela and her son can use pharmacies in the five boroughs and have their rights to language assistance services respected.
But what about people living in areas where government agencies are not as receptive to the claims of linguistic minorities, and where local elected representatives do not have the same numbers of immigrant constituents holding them accountable? What about people like Baltazar Cruz, who went to a hospital in Mississippi to give birth and ended up having her child taken away from her because she didn’t speak English? In these cases, re-opening the doors of the federal courthouse is crucial. Language rights are, fundamentally, civil rights, which should have a remedy in every part of our country. And leaving your health care provider with an understanding of how to care for your child, with that child still in your arms, is a basic right; it should not be a privilege.