It's been five years since Linda Wargo was put on a waiting list for a kidney transplant at the University of Pittsburgh Medical Center.
In the first months after being told that her kidneys no longer worked, she cried and sighed. But when she found out that her youngest daughter was telling teachers that she was going to die, she decided she better get on with living.
That was probably a wise choice, in part because studies show that African Americans like Wargo wait longer than whites to get a kidney transplant. Meanwhile, she goes to the dialysis clinic three times a week, which makes her feel better.
"I'm not going to sit up here and I'm not going to mope anymore," Wargo said. "I'm living my life as if there was nothing wrong with me because I don't in my heart feel there is anything wrong. [But] I know I need this transplant."
According to reviews by the Commonwealth Fund and the Institute of Medicine, black patients are less likely than whites to be evaluated by specialists for kidney transplant and less likely to get a donor kidney. And Wargo is not expected to do as well as a white patient after the procedure, say studies.
She was upset when a doctor told her that.
"I thought, 'That's not true,' " recalled Wargo, 48, of Fredericktown. "He doesn't know me. He doesn't know how well I take care of myself. I told my husband that this doctor is crazy."
According to the United Network for Organ Sharing, in 1995 about 23 percent of black patients on the kidney waiting list received transplants while 48 percent of white patients did.
That year, African Americans made up 35 percent of the waiting list, although they are only 12 percent of the population. High blood pressure, which occurs more frequently among blacks, can lead to kidney failure.
Health disparities that leave minorities worse off than whites have been also found in bypass surgery, pain management for cancer, lung cancer and other conditions, said Dr. Risa LaVizzo-Mourey, senior vice president of the Robert Woods Johnson Foundation and a contributor to the Institute of Medicine's report "Unequal Treatment."
"It's been documented enough that we know that it's real," she said.
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Stephen Thomas, director of the University of Pittsburgh Center for Minority Health, says there are reasons why African Americans do not trust health-care delivery systems. (V.W.H. Campbell Jr., Post-Gazette) |
Research has indicated that blacks are less likely to opt for a kidney transplant, but even when that is taken into account, the end result is the same. It's tougher to get listed, it takes longer to get transplanted and the outcome isn't as good for black people.
Dr. Clive Callender, a transplant surgeon at Howard University, said the biggest reason for the disparities isn't being addressed.
"Institutionalized racism is a major factor as it relates to all aspects of transplantation, from getting on the waiting list to being transplanted," he said. "It is a malignant villain, but it is currently being ignored."
Callender also points to the "green screen" as another obstacle to care.
"There are clinical criteria that are used to determine who gets the transplant, and there are also social and economic factors that are taken into consideration," he said. "Things like, 'Do you have the social support necessary to maintain your medications?' This green screen, unfortunately, again places African Americans at a disadvantage."
LaVizzo-Mourey noted that low-wage earners who have health insurance coverage with a high deductible and co-payment may be less likely to pursue treatment, and that minorities tend to have such health plans.
Stereotyping may also influence physicians' decisions about whom to refer to transplant.
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| | More information  National Minority Donor Awareness Day is Aug. 1, sponsored by the Minority Organ Tissue Transplant Education Program.
Communities throughout the country will sponsor donor drives, health walks and prayer breakfasts to promote healthy living and disease prevention and to increase the number of people who sign donor cards.
For more information about the awareness day or the transplant education program, call 1- 800-393-2839 or check the Web: www.nationalmottep.org
Other resources:
National Kidney Foundation of Western Pennsylvania, 412-261-4115, www.kidneywp.org
United Network of Organ Sharing (UNOS) 1100 Boulders Parkway, Suite 500, P.O. Box 13770, Richmond, Va., 23225-8770. Public information line: 1 (888) TXINFO1 or 894-6361 or www.unos.org
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"There have been studies that suggest that physicians are more likely to have negative stereotypes of their minority patients," she said. "That the patient is less educated, less able to understand the treatment, less likely to comply with treatment. Those ... can be used to justify not prescribing a particular treatment that may require high levels of compliance in order to be effective."
The Institute of Medicine report, "really didn't find evidence there was frank bias, just plain racism," LaVizzo-Mourey said. "But there's lots of reasons to believe that the health-care system operates in the same way that other systems do in our society. There's overwhelming evidence that there's differences between the way whites and blacks are treated."
She added that devising ways now to reduce or eliminate disparities is more useful than pointing accusing fingers.
"If we acknowledge that there are disparities in access to cardiovascular care, for example, and put into place measurement systems to detect whether or not those disparities continue to persist and hold health-care systems and physicians accountable for eliminating those disparities, then in some ways it doesn't really matter what the cause was," LaVizzo-Mourey said. "The point is, the presence of disparities is unacceptable."
Racism vs. awareness
The fact that fewer black patients who have kidney failure are referred to transplant experts might reflect institutionalized racism, said Dr. Velma Scantlebury, a surgeon at the University of Pittsburgh's Starzl Transplantation Institute. Or it may be that patients aren't aware that transplantation is a reasonable treatment option.
Dialysis patients on Medicare must be screened for kidney transplant. Often the surgeons are sent only a standard referral form with a check mark next to a pretyped statement that says the patient is not suitable for transplant or that the patient refused.
"From [the transplant team's] standpoint, there may not be enough information on that piece of paper to tell us why they are not suitable" or why they refused, Scantlebury explained. "It really boils down to making sure the patients are well informed of their choices and that assumptions are not being made about how well they are informed."
But getting onto the list is not a guarantee that a transplant will happen.
Experts say that finding a kidney that is a tissue match for a black recipient is difficult. First, the blood types of donor and recipient should be the same. Then, doctors look at three pairs of cell surface proteins called histocompatibility factors, or HLA, which vary among ethnic groups.
In a perfect case, everything matches. If necessary, a less than exact match can work fine, which increases the likelihood of finding a donor organ. Yet HLA matching doesn't play such an important role in allocating organs such as livers and hearts.
So for a kidney transplant, "until the system is changed [so that] less emphasis is given to HLA matching, minorities, not just African Americans, will be at a disadvantage," Scantlebury pointed out.
Some patients carry pre-existing antibodies to HLA factors that can form through blood transfusions or pregnancy. They can cause rapid rejection of the kidney.
"There are more African Americans on the list who are highly sensitized, meaning they bear antibodies to a large segment of the population," explained Dr. Adriana Zeevi of the Starzl Transplantation Institute. She added that the blood types of the donor pool, which is predominantly white, don't tend to match that of blacks, either.
In the process of rejection, the patient becomes further sensitized, further reducing the chances of finding a compatible kidney.
"The point is to recognize that if an African American today receives a transplant that's very poorly matched, the next time he comes along it will be even harder or maybe impossible," Zeevi said.
Transplant experts are attempting to improve the odds by filtering the pre-existing antibodies out of the patient's blood. There is also research under way looking at how African Americans metabolize antirejection drugs, Scantlebury said.
"I'm glad that the transplant community is trying to look at ways of increasing access to transplantation for all patients," she said. "A lot of that will be based on education, not only of the patients but of the nephrology community."
Getting the word out
In an effort to encourage African Americans to be organ donors, Callender established the National Minority Organ and Tissue Transplant Education Program to take a grass-roots approach to increasing awareness about donation and transplantation.
Five years ago, Wargo's oldest daughter offered her kidney for a living donor transplant, but testing showed that Wargo had pre-existing antibodies to her daughter's cells. Mother and daughter intend to be retested soon in the hope that the immune reaction has subsided or can be overcome with medication.
As far as organ donation, Wargo has discovered that people have a lot to learn.
She has been told by some acquaintances, "That's something God gave me and I'm going to keep it." Others fear that their organs will be taken before they die. Those attitudes and beliefs stop some African Americans from donating, which makes it harder for black patients to get a donor kidney.
It's because "we don't know," Wargo said. "Nobody is sitting down and telling us these things."
Stephen Thomas, director of Pitt's Center for Minority Health, wants to change that.
"Something is happening in Pittsburgh that is a model for the nation," he said. "Part of it has to do with getting out of the ivory tower and going into the communities."
Messages promoting good health and disease education will be done not only with traditional partners, such as the Urban League, but with barbers, beauticians, ministers and other laypeople who have strong ties to the local populations.
"There's reasons why African Americans no longer trust health-care delivery systems, and it's now incumbent upon health professionals to re-earn that trust," Thomas said. "That requires we get into the streets, go into the neighborhoods where people live, where they worship, buy their groceries where they get their hair cut."
Mobilizing the foot troops, as Thomas put it, is the first step in a multiyear campaign to close the gap between black and white in health issues.
Not so long ago, the Rev. Martin Luther King Jr. protested at lunch counters where he could not get service.
"Today, we would be protesting on the doorsteps of our health-care facilities because we're not able to access state of the art care," Thomas said.
"Whether it's the color of our skin or the color of our insurance card, we cannot move forward as a nation [or] as a city and have vast segments of our society locked out of the benefits that modern health care has to offer."
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