African Americans overcame insurmountable obstacles to defeat the racist Jim Crow system; now the fight for equal rights has turned to quality health care

2002 was not a good year for Natalie Webb. The registered dietician saw four family members die within the first eight months of that year: her brother in January of kidney cancer; her father in May of pancreatic cancer; two weeks later diabetes took the life of her uncle, and in August her 30-year-old niece lost her battle with cardiovascular disease.

"As a health care professional I always knew about the incidents of health disparities in our community," says Webb, president and founder of the Nutrition Network, Inc., a nutrition consulting company based in Germantown, Md., that specializes in nutrition and health promotion. "But it really hits home when it's within your own family."

Webb, 41, acknowledges that genetics shares the blame with lifestyle choices - poor diet and lack of exercise - for her family's losses.

But the Webbs could easily have been any Black family in the United States. African Americans lead the nation in heart disease, obesity, cancers, stroke, diabetes and kidney disease. The death rate for Blacks is 30 percent higher than for Whites.

Webb points to the unhealthy lifestyles of many Blacks, whose diet of fried and sugar-laden foods can lead to a plethora of health problems. According to the U.S. Department of Agriculture's 1998 Healthy Eating Index report, only 5 percent of African Americans had good eating habits - diets with a good balance of fruits, vegetables and dairy - compared with 11 percent of Whites.

But dad's genes and grandma's fried chicken aren't the only culprits responsible for the bad health of African Americans. In fact, there are many factors that contribute to health disparities, including access to care, quality of care and the lack of minority health care providers.

All these factors can be traced to a system that has historically devalued Black life. The landmark report, "Missing Persons: Minorities in the Health Professions," released in September by The Sullivan Commission on Diversity in the Healthcare Workforce, found that "the civil rights movement of the 1960s eventually ended the more visible racial and ethnic barriers, but it did not eliminate entrenched patterns of inequality in healthcare, which remain the unfinished business of the civil rights movement."

"If we had been successful in eliminating disparities in the last century, then in 2000 there would have been 85,000 fewer Black deaths, including 5,000 fewer deaths of Black babies in their first year of life," says David Satcher, M.D., former U.S. surgeon general and director of the National Center for Primary Care at Morehouse School of Medicine. The health disparities that exist today, says Satcher are "a matter of life and death and a lot of unnecessary pain and suffering."

As a result, just as the Civil Rights Movement helped break down barriers in education, housing and public accommodations, Black leaders see health care disparities as a new mountain to overcome. The struggle for equality in health care seems like an uphill war, but many soldiers have enlisted for this battle.

For Rep. Sheila Jackson-Lee (D-Texas), the inaccessiblity of health care for many and the lack of quality care for minority groups must be made a priority in America.

"Blacks can access health care, but can't get quality health care," Jackson-Lee says. "Is that equal? Is that just? Health care has to be a civil rights issue of the 21st century."

ACCESS TO CARE

According to the 2003 National Healthcare Disparities Report (NHDR) released by the U.S. Department of Health and Human Services' Agency for Healthcare Research and Quality, "Access to health care is a prerequisite to obtaining quality care."

"Every person should have access to high quality comprehensive health care that is affordable to them without regard to their ability to pay," says Rep. Danny K. Davis (D-Ill.), who introduced the amendment to create the government's annual report on health disparities.

A major obstacle to access however, is the lack of health insurance. Contrary to popular belief, the majority of those without health coverage are not people who are low-income or living in poverty.

"Many, if not most, Americans who don't have health insurance have jobs," says Mark Johnson, M.D., chairman of the Department of Family Medicine of New Jersey Medical School and president of the Association of Departments of Family Medicine. "They work every day."

Sharee Stephens, for example, is a freelance television producer. She has not had health insurance for three years. The 34-year-old says the coverage is too costly and there are more immediate concerns, like making sure she has transportation, a place to live and food on the table. But because of her lack of insurance, Stephens tries hard to avoid getting sick.

"You have to be more cautious. It's like a game of Russian roulette," says Stephens, who works in Westchester County, N.Y. "I walk around with paper towels and don't touch door knobs."

Unfortunately, Stephens did get sick last May. But she thought her relentless coughs could be remedied with over-the-counter drugs. She downed a bottle of cough syrup nearly every day so that she could go to work. But when her condition had not improved by July, Stephens reluctantly went to the doctor.

Stephens learned she had bronchitis, but her doctor warned that her condition could have been more serious, like walking pneumonia, because she had taken so long to get medical attention. In the end, her visit came to a little less than $200.

"It was money well-spent," says Stephens.

And so that she wouldn't have to go broke buying pain medication, Stephens's doctor gave her sample prescriptions. He knew that with no health insurance, a trip to the pharmacy would have been too expensive for her to pay out of pocket.

Her lack of health insurance has also kept Stephens from stepping inside a dentist's office for the past four years. Though she needs to get three wisdom teeth extracted, the procedure is just going to have to wait.

"I'm scared to ask how much it is to get the teeth removed," says Stephens, who treats the "killer pain" with Anbesol.

Stephens's situation is not unique.

There are 45 million people who don't have health insurance in the United States. Some, like contractors and consultants, make too much money to qualify for government assistance, which is usually reserved for families 100 percent at or below the poverty level. Others, such as employees at small businesses that don't provide coverage for employees, don't make enough to afford private health insurance. As a result, many, like Stephens, just go without it.

"When you're healthy, you don't think about health insurance too much," says Stephens. "There are so few people I know who have health insurance."

In fact, according to the latest figures from the National Center for Health Statistics, only 58 percent of African Americans younger than 65 have private health insurance, compared with 79 percent of Whites. Twenty percent of Blacks have Medicaid or some type of government assistance, while only 7 percent of Whites do. Twelve percent of Whites have no health insurance, and at 19 percent, Blacks are overrepresented in the no-insurance category.

But as a single professional Stephens only has to worry about herself. Those with families have to think about the health care needs of children who are vulnerable and need to see a medical professional on a regular basis for services such as checkups and immunizations.

Unfortunately, more than 9 million children younger than the age of 19 in the United States have no health insurance; 19.8 percent of them are African American. Nearly 90 percent of children with no health insurance, however, live with working parents whose employers do not offer health coverage, so they are not eligible for services such as Medicaid.

One program provides a boost for families of modest means. In 1997, Congress enacted the Children's Health Insurance Program (CHIP), which was created for children in working families whose incomes were too high to qualify for Medicaid, but too low to be able to afford private health insurance.

In 2001, more than 4 million children were enrolled in CHIP, but many families are unaware of the government program. As a result, 5.8 million eligible children are not taking advantage of it.

THE MANNER OF MAN

"Our health care system is for the privileged," says Henrie Treadwell, director of Kellogg Programs and Community Voices for Morehouse School of Medicine's National Center for Primary Care in Atlanta. "If you don't have any money, it isn't for you."

Treadwell says that Black men, especially, have remained at the margins of the health care system. She points to social policies such as welfare and Medicaid that are geared toward women. Twenty-eight percent of African American men have no health insurance, compared with 20 percent of Black women and 17 percent of White men.

"You have to get sick as a man to get health care," says Treadwell, also associate director for development at the National Center for Primary Care. "Black men, in general, have poor health status. There is no way to get the kind of care they need."

Men tend to visit the doctor less than women and Black men (53 percent) are even less likely than their White counterparts (67 percent) to go to a physician.

Matthew Warren, for example, hasn't been to the doctor in two years, though he has health insurance through his job. The 30-year-old federal government employee has put off going to the doctor despite a family history of diabetes. Both of Warren's parents have it and his grandmother died last year of complications from the disease. But Warren doesn't see any reason why he needs an annual checkup if he isn't sick.

"I feel fine. There's nothing major wrong with me, so what's the point?" asks Warren, who lives in Lorton, Va. "I already know what the problems are in my family. I already know what the doctor's going to say, 'lose weight, eat right, yadayadayada.' What more can he tell me that I don't already know?"

Warren says he gets his "macho" attitude about going to the doctor from his father, who never went to the doctor and taught him to be tough. But now his father has to visit a physician regularly to monitor his diabetes.

As he gets older, Warren says, he thinks more about going to the doctor, but has been procrastinating. Right now, he says, neither he nor any of his male friends - Black or White - see a need for visiting a doctor.

"The thing that bothers me the most about health is that if you live to be 80, are you going to be suffering? My grandmother suffered the last four years of her life," says Warren. "That's what I worry about the most. Am I going to be healthy when I die or am I going to be sick?"

Treadwell believes that many Black men are suffering from health problems that could have been prevented with proper and timely treatment. According to a 2003 report by the Kellogg Foundation, 40 percent of Black men die prematurely, compared to only 21 percent of White men. A great number of the Black deaths are from strokes.

The poor health conditions of Black men transcend education, income or socioeconomic status. For example, in September, the Institute for the Advancement of Multicultural and Minority Medicine based in Washington, D.C., recognized nationally known Black figures who overcame chronic illnesses, including neurosurgeon Ben Carson, who had prostate cancer, and former U.S. Senator Edward Brooke (R-Mass.), who had breast cancer. Thomas Dortch Jr., chairman of 100 Black Men of America, spoke about his battle with cancer of the small intestine, and civil rights activist Dick Gregory gave a passionate testimony about overcoming lymphoma of the lung, spleen and lower stomach.

It's this kind of dialogue that is needed in the Black community to address what the health of African American men means to the future of Black families, says Treadwell. "Too many of our men are getting sick and dying early. We have too many who are on disability who don't need to be. We have to have a healthy population."

LOCKED OUT

While many Black men may shun going to the doctor, Black women who seek medical attention at their neighborhood health care facility may be in for a shock. Religious restrictions at hospitals, something that few people know about, can prevent women and children from receiving much-needed care.

Institutions or individuals can deny a legal service to a woman - contraception, tubal ligation, abortion, infertility treatment - that is at odds with their beliefs, says Jill Morrison, senior counsel for the Washington-based National Women's Law Center.

Religious restrictions are usually enforced in Catholic hospitals, which make up the largest nonprofit health care system in the United States. The 624 Catholic hospitals throughout the nation consist of about 10 percent of all non-federal hospitals. The Catholic facilities are guided by the "Ethical and Religious Directives for Catholic Health Care Services," a code of conduct developed by U.S. bishops for Catholic health care providers.

Many of these hospitals have merged with struggling, financially strapped community hospitals in low-income neighborhoods. Since 1990, nearly 100 mergers have occurred in 32 states. In many cases, once a merger occurs, reproductive health services are eliminated.

In a 2002 study commissioned by the Washington-based Catholics for a Free Choice, more than half - 55 percent - of emergency rooms at Catholic hospitals refused to provide emergency contraception to women, regardless of the circumstance.

"When you're limiting family planning - the ability of a community to decide when and how to bear children - you really have a serious impact on community health," says Morrison. "It's just patently unfair that in a nonrestrictive hospital, a White rape victim is getting what she needs and a Black victim [in a restrictive hospital] has to jump through hoops."

The National Women's Law Center has partnered with the NAACP in holding locus groups around the nation to educate communities about religious restrictions. The project discusses the serious impact that limitations have on access to care, especially for those who have income and transportation issues and don't have the ability to travel beyond their geographic area.

"This is dangerous because a lot of people without insurance rely on hospitals for basic health care," says Morrison. "A lot of times, when this comes up, it's taking place in cities that are predominantly Black, and no one knows that it's going on."

QUALITY OF CARE

The Civil Rights Movement was based on the notion of equality for all. But even when African Americans have access to the health care system, the quality of care they receive is often substantially below that given to Whites. In the landmark 2002 Institute of Medicine (IOM) report, "Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care," researchers found that there was "inequality in quality" in health care. "Minorities tend to receive a lower quality of health care than non-minorities, even when access-related factors such as patients' insurance status and income are controlled," the report said.

The study revealed that Blacks are less likely to receive medical procedures, such as proper cardiac care, kidney transplants and basic clinical services. It also found racial differences in appropriate cancer diagnosis and HIV care. Yet Blacks are more likely than Whites to receive the most intrusive procedures, such as amputations and castration.

"What this study shows is that the color of your skin and the perceptions that go along with the color of your skin sometimes alter the care that you get, even if you had the same economic background, the same kind of insurance," says Celia J. Maxwell, M.D., assistant vice president for health sciences and director of the Women's Health Institute at Howard University.

Unfortunately, most Americans aren't aware of the racial disparities that exist in quality of care. The 1999 Kaiser Family Foundation report, "Race, Ethnicity and Medical Care: Survey of Public Perception and Expectations," found that 67 percent of Whites believed African Americans got the same quality of care as they did. Even more surprising, the report found that 69 percent of physicians believed that the "health care system 'rarely or never' treats people unfairly based on an individual's race/ethnicity."

Many doctors, the IOM report revealed, don't consciously discriminate against patients. However, who gets what kind of care is often decided based on preconceived negative stereotypes about certain groups. The report found, for example, that provider "bias, prejudice and stereotyping" may contribute to health care disparities. Even those who were "well-meaning" demonstrated negative racial attitudes. The report cited a study in which doctors working in a clinical setting rated African Americans - despite their income or education - as lazy, less intelligent, less educated, less likely to comply with medical advice and more likely to abuse drugs and alcohol.

"There is a perception and a cultural bias that the physician doesn't even see what they're doing," says Maxwell. "If the provider of the service is not intune to the culture of the service recipient or is not a person of the same ethnicity or race, then there are inherent biases in care. It has to do with an image about what people that look like you represent in terms of importance, in terms of values."

CULTURAL COMPETENCE

The lack of minority doctors in minority communities is another major factor in health disparities. Too often, minority communities are faced with providers who do not look like them and do not understand their cultural environment or social situations.

"Who are the people who are offering the healing, of not only body, but of spirit?" asks Treadwell. "We are increasingly facing a future with fewer and fewer providers."

The Sullivan Commission report noted that medical schools "have been among the last to integrate their classrooms" and that "the ghosts of segregation continue to haunt the health professions."

Minority physicians are indeed in short supply. African Americans represent only 3.9 percent of all physicians in the country, up from 3.5 percent in 1960. And if medical school enrollment is any indication of the future, then the possibility of a sudden boom in the ranks of Black doctors is unlikely. This year, Blacks represent 6.5 percent of the first-year enrollees in the nation's medical schools and 7.2 percent of the overall medical student population.

"Overwhelmingly, people of color get their care from people who do not look like them," says Maxwell. "We need to ensure that we have a pool of ethnically diverse, culturally sensitive providers giving the services, doctors who can identify with some of your issues. You have to trust your doctor."

The IOM report found that minority doctors were more likely to work in minority communities. The Sullivan Commission found similar evidence when it cited a 2002 survey of dental school seniors in which 69 percent of Blacks indicated they planned to work in underserved communities, compared with only 20 percent of Whites. The Commission put forth 37 recommendations to address the underrepresentation of minorities in the health professions, including improving early education, boosting minority scholarships for medical education and enforcing diversity and cultural competency goals.

In the meantime, those like Michelle Rice-Green, M.D., will remain in demand. The Howard University graduate has spent most of her career working in underserved communities. A physician for nearly a decade, Rice-Green, 37, is currently practicing at the Hunt Place Clinic in Washington, D.C. The clinic is part of Unity Healthcare, a nonprofit health organization that works with the D.C. government to serve people who are at least 100 percent below the federal poverty level, which is $18,850 for a family of four.

Hunt Place is a two-story brown brick building across the street from Ms. Charlotte's Crabcakes and Big D Liquor. As the clinic buzzes with the excitement of an upcoming Halloween costume contest, Rice-Green sits in her small office quietly reading the newspaper. A family doctor, she receives a set salary - approximately $100,000 - from Unity for her work, unlike many physicians in private practice who get paid by insurance companies based on the services they perform on each patient.

"I would be making more in private practice," Rice-Green acknowledges. "But the most fulfillment I get is treating patients with self-pay or with Medicaid, Medicare because a lot of times they don't have any place to go. I treat patients as patients, regardless of socioeconomics."

The majority of her clients at Hunt Place are single women between the ages of 20 and 65, who are unemployed with children. Rice-Green, a D.C. native who was raised by a single mother, understands the struggles her patients face every day.

"When I'm with a patient, it's a partnership," she says. "If they know there's a place you can go, that they have access to preventive care, people will come."

Randall W. Maxey, M.D., a California-based nephrologist (kidney specialist) and president of the Alliance of Minority Medical Associations, believes all patient-physician relationships should be based around the kind of "cultural competence" that RiceGreen brings to her relationships.

Cultural competence, says Maxey, is "effective communication between the health care provider, physician and patient so that the patient understands what the problem is, what the physician plans to do, what the treatment requires, and what the patient needs to do."

Maxey, 62, describes cultural competence as taking the time to understand and study how to treat a particular patient and using the appropriate communication techniques to form a relationship. It may involve different approaches for different subgroups. For Blacks, Maxey says, it comes down to trust.

"Many of us have gone to the doctor with older relatives and we've seen people treated with disrespect and uncaring," he says. "The attitudes that many doctors had were aloof, often insulting. The patient has to feel as if they are respected and that you care about their outcome."

NEW CIVIL RIGHTS FRONTIER

At the heart of the lack of access to care and quality care, many experts believe, is a larger problem that is rooted in the historical context of our society.

"When we think about Charles Drew, the man who invented the blood transfusion, he died because he couldn't get one," says Rep. Davis. "Racism, inequality existed."

Racism still exists today and is one of the real causes of health disparities, says Maxey, who is also the immediate past president of the National Medical Association, a group that promotes the interests of physicians of African descent.

"Blacks don't get the same level of referrals or the same diagnosis. They don't get the same level of attention," says Maxey. "You have to look at the sociology of it. Social disparities. Empowerment disparities. Put all the inequities down, health disparities are just the tip of the iceberg."

Camara Jones, M.D., an adjunct professor in the department of community health and preventive medicine at Morehouse School of Medicine, agrees. She has done extensive research on racism and the impact it has on health.

Racism, Jones says, is "a system of structuring opportunity and assigning value based on the social interpretation of how we look. It has the effect of unfairly disadvantaging some individuals and communities, while unfairly advantaging other individuals and communities."

According to Jones, the initial social injustice of Blacks being enslaved has continued in the form of institutionalized racism: the structures, practices, policies and norms that result in differential conditions, differential opportunities and differential treatment for people of color.

As a result, today, minorities are disproportionately represented in poverty-stricken neighborhoods, low-performing schools and low-paying jobs. All these factors have an impact on the kind of health care one receives.

The NHDR report noted that "racial, ethnic and socioeconomic disparities are national problems that affect health care at all points in the process, at all sites of care, and for all medical conditions."

"It's just not health policies, but ail of our social policies," says Jones. "We're not going to take care of health disparities just through the public health system. It's going to take looking at justice, education, housing, labor, transportation. We're going to have to address all of the structures in society, not just in the health care system."

A BROKEN SYSTEM

At Hunt Place, Rice-Green tries to deliver the best quality health care she can. But she admits that it is not without its challenges. For example, although there's a pharmacy on site, it is limited in terms of the medications it can prescribe. Also, many of her patients are on D.C. Healthcare Alliance, the District's insurance for people in poverty, and can't afford certain types of medication.

Another challenge is finding specialists for her Medicare patients. Although Hunt Place has access to many specialists, there are some who refuse to take the government insurance. As a result, some may not get the care they need.

"You ask why is health in the Black community so bad compared to others. It comes down to money and access," says Rice-Green. "People have to think about, am I going to eat today or am I going to get this medication. Which one am I going to do?"

Many physicians of color share in Rice-Green's frustration, says Mark Johnson, M.D., of the New Jersey Medical School. He suggests overhauling the current health care system and replacing it with universal health care. He recommends a national care service that includes national health care coverage.

"Every single American should have the right to have health coverage, access to basic prevention services," says Johnson. "We have to have something for those 45 million who have no insurance and other Americans who are underinsured."

Rice-Green agrees that changes must be made.

"We're supposed to be the richest country in the world, yet we have over 40 million people uninsured. That's unacceptable," says Rice-Green. "Regardless of income, regardless of race, creed or color, you should have good health care without a question. Some type of health care reform must be met."