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Awareness is the first step to bridge cultural divide
Developing new prevention strategies and finding ways to improve African-American patients’ access to the best medical care are among the biggest challenges now facing clinicians and others who work with HIV patients, experts say.
Clinicians who treat gay, white, HIV-infected men have become so accustomed to patients who are eager to try new clinical trials, take their medications religiously, and learn all they can about their disease that it’s sometimes a shock to encounter the opposite attitude in a patient.
But there are big differences in the way the white homosexual community has dealt with AIDS and the way the black community has handled it, and experts say clinicians need to be aware of these differences or they’ll miss the boat when attempting to treat African-American HIV patients.
"The success story of the first decade of AIDS is due to the advocacy and willingness of white gay men to step up, take ownership of this disease, and push the scientific envelope in ways that have never been done before," says Stephen Thomas, PhD, director of the Institute for Minority Health Research in the Rollins School of Public Health at Emory University in Atlanta.
"The red ribbon now is ubiquitous and an international symbol of public awareness, and it has transformed how we think about addressing issues of a disease when it affects a particular population," Thomas says. "But we now know that what has worked in the past in treatment and prevention is not working for everyone."
Many African-Americans view HIV fundamentally differently from the way the majority white population does, and HIV leaders, who have worked mostly with the gay white community, have failed to grasp this cultural difference, Thomas explains. "You can’t take what was done for gay white men and apply it to the African-American community because it doesn’t work that way."
AIDS Alert asked Thomas and several other experts about the problems clinicians face when dealing with African-American patients and how they might overcome the distrust and other barriers to optimal HIV treatment.
Here’s their advice:
1. Acknowledge trust issues.
Being black in America still matters, and racism still exists, so there’s no point in ignoring its effect on health care, Thomas notes.
"Health care providers of a different race or different social class of the very people they’re trying to reach may find themselves faced with new challenges," he says.
Clinicians can begin to overcome racial and trust barriers by giving patients time to ask questions, suggests Tara Clark, an educator with the Southern Tier AIDS Program in Johnston City, NY. Clark is involved in a project called Sista, which is designed to support and empower African-American women with HIV. Sista was developed by Sociometrics Corp., a research and development firm specializing in social science research applications in Los Altos, CA.
"Physicians don’t always seek the advice of their clients, and patients are their own best doctors sometimes," Clark says. "So have open discussions with clients about medications, treatment, what their particular problem is, and make it an open dialogue where it’s a partnership, instead of the clinician saying, You have this disease, so take this drug.’"
Increase number of blacks in AIDS drug trials
"We must increase the number of African-Americans in AIDS clinical trials," Thomas says. "African-Americans are underrepresented in AIDS clinical trials."
In trying to convince patients to participate, clinicians might acknowledge past instances when the government has betrayed black people for the sake of medical science, such as the Tuskegee Syphilis Study, and remind them that the president of the United States has apologized for that grave error. Then assure patients that current HIV clinical trials are conducted with the highest ethical and patient safety guidelines. Plus, they might explain how people with HIV participating in clinical trials have helped bring many new drugs to the market, including protease inhibitors, which have greatly increased the life expectancy of people with HIV.
"If there’s one thing that’s clear, the willingness of gay white men to join clinical trials, not only as participants but actively involved in experimenting with new drugs and in the whole process, was a significant factor in the speed at which these breakthroughs took place," Thomas says.
Also, it’s important for clinicians not to under estimate the extent to which their black patients might be suspicious of the HIV health care community.
"In the African-American community, there is a conspiracy theory that HIV is a disease meant to wipe out certain segments of the population, including themselves," Clark says. "For some people this means, Let’s fight this,’ and for others, it means, I’m going to get it anyway, and the prevention efforts are just another ploy to make me infected.’"
The conspiracy theory is so widespread that some black people even distrust needle-exchange programs and condom distributions because they think they’re being given dirty needles and that the condoms will have holes in them, she adds.
2. Address your health facility’s quality of care.
"One issue is that a lot of African-Americans often feel the care they receive is less than adequate," Clark says. "The perception is that if you’re in a community that’s primarily African-American, then your health care facility will be less adequate than a health care facility in a primarily white neighborhood."
Unfortunately, the perception sometimes is right, she adds. Inner-city hospitals in primarily black areas may not always have the same state-of-the-art facilities and equipment that are available to newer suburban hospitals.
Clinicians, in whatever setting they treat African-American patients, need to reassure them that the care their facility provides will be of the highest quality, and that the clinician will do everything possible to help them stay healthy.
If a clinician’s facility or hospital is accredited by a national organization that assesses quality, then the clinician might mention this fact, as well.
3. Be sensitive to the cultural stigma attached to homosexuality and AIDS.
There’s a deeply entrenched stigma against homosexuality in the African-American community, says Miguelina Maldonado, MSW, director of government relations and policy for the National Minority AIDS Council in Washington, DC.
Black men who have sex with men may not identify themselves as being gay, or they may be unsure of their own sexuality, Maldonado says.
"Some young gay men may have sex with women if they’re still struggling with their own sexuality and coming to terms with their gayness," she adds. "And there is a strong pressure for them to conform to what’s expected, which is to be a heterosexual."
Denial is high among black homosexuals
Black men who have sex with men may be in denial that they’re at risk for HIV, and this compounds the possibility that they’ll spread HIV. It also thwarts any prevention efforts that are aimed at black homosexuals.
"The structured HIV delivery system based on a gay white model won’t work in a Latino or black community," says Wilbert Jordan, director of OASIS Clinic and AIDS Program of the King Drew Medical Center in Los Angeles.
"Gay’ is a white term," Jordan explains. "Gay’ in the black community refers to sissies." Thus, black men who have sex with men often often will not call themselves gay. Jordan’s clinic surveyed 341 black men who have had sex with men. Of these, 202 said they were bisexual, 105 said they were gay, and 34 said they were neither. Of the 34, 32 had had their first male sexual contact in jail. "Most of my patients don’t identify as being gay because it’s more acceptable to say they’re bisexual," he says.
Jordan has seen some extreme examples of what happens when men deny their sexual inclination.
"I had a minister come into my office two weeks ago with his wife, a deacon boy, and his mother-in-law, and he’s making strong statements against homosexuality," Jordan says. "He says he’s a strong heterosexual, and there are demons trying to undermine his program, and he has a sore throat."
Jordan found his behavior curious, until it occurred to him that the minister, who is African-American, was using his entourage of family and deacon boy to convince the doctor that he’s not gay. Jordan examined his throat and found that he had venereal warts, which were likely transmitted through an oral sex act with another man.
So Jordan reassured the man and his family that his sore throat would be easily treated, and then he asked to speak with the minister alone. Once the door was closed, he told him the diagnosis. Then Jordan said he could make a referral for this man to have his warts treated at an out-of-state clinic so the minister could keep this confidential from his family and congregation. But he also told him that he should be tested for HIV.
The man turned out to be HIV-positive. Because he trusted Jordan to maintain his secrecy about his sexual acts and disease, he continued to see him for HIV treatment.
However, Jordan didn’t feel his responsibility ended there. He told the minister that his wife also would have to be tested for HIV, and that the minister should either begin to wear a condom during sex or abstain from having sex with her.
4. Help African-American patients find support networks.
Homosexual black men do not have the support network that’s available to white gay men in many large cities, Jordan says.
"The white community has a group of upper-middle-class gays, and if I’m a gay white man and my family kicks me out, I have friends who can be my support," Jordan says. "If I’m a gay black man and I’m living at home with Mama, then my friends also are at home with Mama, and we don’t have the same resources."
African-American women and injection drug users with HIV also need greater access to health care services, substance abuse programs, and support networks than what they’ve had in the past, Maldonado says.
HIV/AIDS in minority communities is a problem that’s embedded in social and economic problems. "We have an intersecting problem of substance abuse and sexually transmitted diseases in these populations," she adds.
Also, because drug-addicted women may avoid treatment out of fear of losing their children, communities need to address this issue by offering support that will allow the women to receive treatment and then return home to their children, Maldonado says.
5. Focus on communication and building self-esteem.
Programs like Southern Tier AIDS Program’s Sista project are designed to help build self-esteem and to empower people with HIV. Other projects include a Washington, DC, program that focuses on getting the message out about AIDS through beauty salons.
Maldonado notes that there already are proven strategies that help African-American women focus on building self-esteem and taking more control over their lives. These types of programs help them learn how to communicate more effectively with their partners, and they teach women that they’re important enough to protect themselves during sex.
Hold open discussions with patients
Still, the most direct form of HIV education is between clinician and patient. So clinicians should learn how to communicate most effectively.
Clinicians might find that their black patients will more readily accept their HIV education if they take an open-discussion type of approach, Clark suggests.
For example, Clark says, she is African-American and therefore is at risk for hypertension. Her doctor tells her she’s at risk, but doesn’t say why she’s at risk. And this is a mistake.
"They don’t have an open discussion of what puts me at risk and instead just say, Change your diet and stop eating greasy foods,’" Clark says. "Well, maybe I’m not eating greasy foods, or if they just say that, they may take away from me foods that are very much a part of my culture."
Instead, clinicians should discuss how diet contributes to hypertension and give some examples of food substitutes that could help to lower hypertension, but taste about as good.
In the same way, clinicians dealing with HIV patients could educate them about their disease, ways to prevent spreading the virus, and how to stay healthy.