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Still Closing The Gap
THE STREET STRETCHED IN FRONT OF US, a hot macadam causeway leading to a brick school three blocks distant. Small groups of parents with children in neat shirts, shorts, and skirts walked purposefully toward the school. The kids were headed to their first day of school—a new school for all of them, the white school. The parents, laborers from the town or farmers from the nearby countryside, were black, proud, and scared. It was August 1965 in Durant, Mississippi, and history was unfolding. Prodded by the epic Civil Rights Act of 1964, the Mississippi countryside was integrating its public schools. I watched this scene from behind a police barricade in a nervous crowd of onlookers. I was a white medical student from Chicago, sent to Durant by the Medical Committee for Human Rights, the medical wing of the Civil Rights movement that provided physicians and nurses for marches, demonstrations, and community organizing. My work in Durant consisted of running health education classes for local teens and organizing a health association in the black community to raise awareness about problems with medical care. From time to time, I put on a tie and paid visits to patients, the segregated Durant Hospital, and the offices of local doctors, with separate waiting rooms for "Whites" and "Coloreds." This exercise, called "medical witness," was intended to make injustice visible and call on the conscience of the offending practitioner or institution. When I asked questions about segregation and hospitals’ care of specific patients, these inquiries were not well received. I reported all of this back to the health association. As the black children headed to the white school that day, the parents were understandably scared. The all-black Durant "Attendance Center" had been the education home for Durant’s black population for as long as anyone could remember. The parents wanted their children to attend the "white school," but they were worried about the children’s safety and about retaliation that might take place against them at work or at home. The police were on guard for trouble. Families I knew well from recruitment visits, preparation meetings, and the health association walked tentatively down the street. A few in the crowd made disparaging comments, and some white adults stood in front of their houses watching with somber faces. By the end of the day, dozens of black children were enrolled without incident, and a new epoch had dawned in Mississippi.
THE PROBLEM SEEMED CLEAR TO ME AT THE TIME. In the United States, racism governed all relations between whites and blacks. Opportunity, income, the vote, health, and longevity (blacks, we knew, lived seven years less than whites) were all hostage to the racism that ordained that blacks would be have-nots in society. I felt certain then that the Civil Rights movement was overcoming (the operative word) this corruption of civic life. Schools were being integrated; black citizens were being added rapidly to the voting rolls; hospitals and health care would surely follow. I was sure that the institutionalized inequity in medical care that I had seen in Mississippi would be gone by the time I set out to practice medicine on my own a few years later. The folks I worked with in Durant called me the "baby doctor," meaning that I was a medical student but would soon be "grown up" and a real doctor. And, indeed, that summer of 1965 launched me as a physician in more ways than one. I left Mississippi wanting to be a doctor more than ever. My vision was to be a civil rights doctor, a specialist who understood racism, inequities, and unfairness and who worked to eliminate them and their deleterious effects on patients. Indeed, I wanted to get back to medical school to acquire clinical skills so that I would be able to treat people in need of a doctor in Durant and places like it. On 30 July that same summer, President Lyndon Johnson signed Medicare and Medicaid into law—an event that, as far as I know, went unnoticed in Durant. Medicare was a huge step forward for America’s elderly, whose work-related medical insurance, such as it was, ended at retirement. With the entitlement to Medicare at age sixty-five, older citizens were assured medical care for the balance of their lives. Medicaid was—and is—different. Passed after long debates about the "worthy poor," Medicaid would have fifty different state versions and a narrow definition of eligibility. The program would ultimately help many low-income whites and blacks alike but, by itself, would not go far enough to eliminate the huge racial and socioeconomic disparities in U.S. health care.
WHEN I RETURNED TO MEDICAL SCHOOL IN CHICAGO in the fall of 1965, my roommate and I moved into an apartment in a poor, mostly black neighborhood where few students lived despite its being only three blocks from the campus. We worked to raise the visibility of health problems by organizing a block club and visiting local doctors in the surrounding neighborhood. Martin Luther King Jr. was active in Chicago at that time, and we had the opportunity to march with him as he challenged the tight segregation of many Chicago suburbs. When riots broke out following the assassination of Dr. King, we left our apartment precipitously and, as it turned out, permanently, as we were no longer safe on the streets. On graduating, I became a pediatric resident at Jacobi and Lincoln—two public hospitals in the Bronx, New York. Patients at these institutions were mostly Puerto Ricans and blacks who either were unemployed or worked for small and marginal enterprises that offered no health insurance. Lincoln was a fortresslike brick building constructed in the 1890s. Because it lacked isolation rooms, the "Diarrhea Room" on the pediatric ward was the destination for all children with diarrhea. The hospital had no neurosurgeon despite the epidemic of head trauma from the streets and falls from windows and fire escapes that we saw daily in the emergency room. Some locals called Lincoln "the Butcher Shop," a label I thought hyperbolic and unfair. Nonetheless, the name captured what South Bronx residents thought about the medical care provided to them. The City of New York furnished them an antiquated building, staffed largely with doctors in training, and considered that the mandate for medical care had been met. Given these realities, the people inclined to call Lincoln "the Butcher Shop" might have argued that they had health care in name but that it wasn’t worth much. Some years later I worked as a National Health Service Corps physician at clinic in northern New Mexico. My patients were mostly Hispanics whose families had migrated northward more than 300 years earlier. Formerly wards of Spain and then Mexico, they had been Americans since 1848, living quietly as an inland nation in the New Mexico mountains. Small farmers, auto mechanics, shopkeepers, accountants, they came to the clinic with their strokes, babies, infections, cancers, and worries. Their struggle, I came to realize, was less about race than it was about the poor and near-poor being closed out of a barricaded system. They mostly worked in village-based economies with few employers who provided health insurance. Their only hope of getting mainstream American medical care was through the clinic or other charitable institutions that were, in turn, connected to mainstream medicine, of being able to squeeze—or having us squeeze—the social services system for what it would yield.
TO OUR CREDIT AS A NATION, WE HAVE STRUGGLED since the 1960s with inequities in health care. The places I worked as a young physician were all part of what has come to be called the "safety net"—a patchwork of programs to provide coverage to the country’s most vulnerable populations using established institutions such as public hospitals, newly enacted programs such as community health centers and the National Health Service Corps, and, above all, Medicaid. I recall hearing the phrase "health care safety net" during the early years of the Reagan administration and considered it a sign of the times—in a league with "catsup as a vegetable" for school lunches. It seemed to me an insult to the dignity of patients that they would get no more than uncertain, makeshift, last-resort medicine. Worse, the term, trotted out antiseptically in policy circles, seemed a capitulation to doing anything better for the medically disenfranchised and a happy codification of the idea that haphazard, second-class care was part of the American way of life. My indignation notwithstanding, I was well on my way to being a safety-net doctor, an ironic fulfillment of my Durant ambitions. After those earlier clinical years, I served in a number of positions in the U.S. Public Health Service, running safety-net programs and devising strategies to expand and improve these initiatives. Over time I became an accepting, even enthusiastic proponent of safety-net medicine and safety-net careers. If there was to be an underclass in American health care, it ought to be the best underclass it could be. Little else seemed plausible with the failure of national health insurance initiatives during the Nixon, Carter, and Clinton administrations and the general waning of the equity passion that was the hallmark of the Civil Rights era. In recent years, I worked in innercity Washington, D.C, at a community health center whose clientele was once entirely black but today is at ground zero for American immigration—legal and illegal. Because Washington is an increasingly frequent destination for immigrants and the clinic sees all comers, it has become a magnet for the undocumented, the uninsured, and the generally uncared-for. Most of the children I saw came from another country or had parents who were born elsewhere. Central Americans who succeeded in the perilous journey through Mexico and across the Rio Grande were my most numerous patients. I also had earnest families from Ethiopia, Mali, Sierra Leone, and elsewhere in Africa who had won the U.S. visa lottery in their countries; refugee families from the Sudan; a minister in the Unification Church from Cameroon; seasoned refugees from Vietnam; and a recently arrived teenager from Mongolia looking for breast implants. But these new Americans were all outside the established medical system. They construct buildings, staff restaurants, and clean offices and homes but have no legal standing, and certainly no health coverage. The economy welcomes them, but the health system does not.
IN SPITE OF THE ACCOMPLISHMENTS OF THE SAFETY NET, we still have not closed the gap for many Americans. Equality in health remains an unfulfilled promise and is, in fact, much more complicated now than it was in 1965. Inequity in health care continues to plague not only blacks but numerous other people and communities around the country. The clinic I worked in is part of the safety net, and it illustrates the problems of pieced-together care. Patients there are actually advantaged in a way that many are still not: they have a medical home with competent, caring clinicians. But many still are uninsured and, therefore, have no entitlement to medications, diagnostic tests, or hospitalizations; Medicaid coverage is irregular and subject to frequent renewal and much documentation; and there are many more people who need care than we could have possibly seen. When we changed the appointment system in an attempt to see more patients, we heard about it. People were furious about having to call at 7:30 in the morning, wait on hold, and then be told there were no more appointments available and to call back the next day. We inadvertently had moved from one form of rationing (no appointments available for two months) to another (a scramble every morning for the day’s openings). The nation has also changed the language that defines the problem. To me and many of us in 1965, the issue was simply racism in medical care. In the 1970s and 1980s the language became broadened to "minority health," suggesting that several racial and ethnic groups within the overall population had special health issues. Hispanic Americans and Native Americans in addition to blacks were prominent in this new formulation. In recent years, minority health has morphed into the concept of disparities in health. In some ways this formulation is more powerful than the earlier terms—it is broader and more amenable to quantitative analysis, National Institutes of Health funding, and thoughtful conversation on the evening news. It is also weaker, because it lacks the moral fervor or political purpose of the earlier labels. There are many nuances to and constituencies for the disparities concept, but the sobering mortality facts remain in place: blacks still live five years less than whites in America, and people with health insurance have 25 percent fewer premature deaths than people without.
THESE QUIET DEATHS NEED TO CALL UP THE SAME KIND OF outrage, personal engagement, and political action that made the Civil Rights movement a success. Health care reform is back on the table in 2009 with ambitious sentiments for universal coverage being expressed by many players. The Civil Rights movement asked people to change, to get over their racism, to give equality a chance—like it or not. To move beyond safety-net thinking, we need a similar sense of common purpose. We need the fire of the Civil Rights movement, even though racism is no longer the simple adversary and segregation is not the constant target. Inertia, greed, and complacency in the larger society are the foes of putting a solid floor in place of the safety net. Many of us (individuals and commercial interests) will surely have to give a little to get everybody insured. Today’s Freedom Riders are people with skills in policy, politics, medical care, and finance who need to be angry and determined. The back streets of Mississippi are less of a factor now than are the main streets of thousands of American towns, where generosity and a sense of national solidarity around health will be needed to win this long struggle for fairness in health. At the Washington, D.C., clinic where I practiced, the sentiment is more hope than it is anger. Many patients and staff told me that President Obama’s victory means that everyone will get health care. A black woman told me she is keeping the election sign up in her yard permanently—"This Is Obama Country." A Latino patient told me that he is going to fix the immigration laws so they will be eligible for Medicaid. An African immigrant patient told me that Obama is...African! Ali, a six-year-old Vietnamese girl, arrived for her checkup on Election Day 2008 carrying a homemade ballot with the candidates’ names written in large letters. By the time I saw her, Obama’s name had a dozen or so Xs next to it. The McCain row was blank. Ali had systematically worked the waiting room, the desk clerks, and the nurses collecting votes. When I asked her what she was doing, she looked at me oddly and said, "Helping Obama win." This summer of 2009 is forty-four years after the enactment of Medicaid and the desegregation of the whites-only grade school in Durant, Mississippi. Yet too much of American medical care today still carries the legacy of the Durant Attendance Center—separate and lethally unequal. One friend who is a policy veteran is fond of saying, "If we’re so smart and hard-working, how have we let it come to this?" A frequent hopeful comment among many colleagues is something to the effect of, "If not now, when?" The answer that calls back is NOW. For Ali, for millions of patients, and for us as a nation, we need to bury that legacy forever—in the summer of 2009.
Fitzhugh Mullan (fmullan{at}gwu.edu) is the Murdock Head Professor of Medicine and Health Policy at the George Washington University. He is a contributing editor to Health Affairs and a consulting editor to the journal’s Narrative Matters section. Mullan was the original editor of Narrative Matters.
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Doctoring In Tough Neighborhoods
The Safety Net
