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HIV/AIDS Resource Center for African Americans
Kai Chandler Lois Crenshaw Gary Paul Wright Fortunata Kasege Keith Green Lois Bates Greg Braxton Vanessa Austin Bernard Jackson

How Is HIV Different in African Americans?

Expert opinions from top HIV specialists treating African Americans

Introduction

People say that HIV is color blind -- and they're right. But let's not kid ourselves: HIV may be the same virus even if you're African American, but having it doesn't always mean the same thing.

How is the HIV epidemic different if you're black than if you're white? How do you separate myth from reality? Why do blacks seem to get HIV more, get sicker more quickly, and get access to HIV get treatment later than other ethnic groups in the United States? Does the U.S. health care system discriminate against black people with HIV? Does HIV treatment itself work differently if you're black?

The answers to these questions are varied and interesting. The Body brought together a distinguished panel of HIV specialists who not only treat many African Americans with HIV, but who also conduct research and are advocates for their patients. Read on to find out what these specialists had to say about what makes the African-American HIV epidemic different from the United States' HIV epidemic as a whole.

Does It Take Longer for African Americans to Get Tested for HIV?

In a word: yes. "Many African Americans have very limited resources," Dr. Pablo Tebas says. "This means less access to medical care in general and less access to preventative medicine in particular. Early screening is critical -- not just for HIV, but for other illnesses that complicate life for people who have HIV, such as hepatitis C, diabetes and cardiovascular disease. Across the board, African Americans tend to be diagnosed later in the disease. So with HIV, the likelihood that they're going to get an optimal response to HAART [highly active antiretroviral treatment] is lower because they have more advanced disease [when they are diagnosed]."

Health experts agree that early detection is the best policy when dealing with any serious illness. Unfortunately, an estimated 56% of all "late testers" -- people who are diagnosed with AIDS within one year of an HIV diagnosis -- are African Americans. There are many reasons that people wait too long to find out their HIV status: Fear, denial and stigma are all barriers to testing. The fact that the symptoms of HIV disease may take 10 years or more to show up is another. But no matter the cause, a late HIV diagnosis is bad news: It not only means that treatment may not be as effective, but it also makes the virus more likely to spread to others, since people who don't know they're positive may not be as safe when it comes to having sex or using injection drugs. Studies show that people who know they are infected with HIV protect others by increasing their use of condoms and using clean needles when injecting drugs.

Is HIV Disease Worse in African Americans?

Many African Americans with HIV are leading healthy, happy lives many years after their diagnosis. But half of all people with HIV who died in 2004 were black -- that's stark evidence that all too many African Americans don't get the health care they need. Less access to health care, later diagnosis and delayed treatment are widely viewed as the main reasons African Americans get sicker more quickly than white people with HIV.

However, a few researchers wonder if HIV disease actually develops faster in African Americans.

"Researchers are looking at whether HIV infection is much more aggressive in African Americans than in others," nurse practitioner Bethsheba Johnson says. "Since many African Americans who are infected are living in poverty, it could be just their living conditions and factors related to poverty that have made the HIV appear to be more aggressive."

"Researchers are looking at whether HIV infection is much more aggressive in African Americans than in others," nurse practitioner Bethsheba Johnson says. "Since many African Americans who are infected are living in poverty, it could be just their living conditions and factors related to poverty that have made the HIV appear to be more aggressive. When it comes to HIV pathogenesis [how the disease develops over time in a person's body] -- and especially when it comes to genetics and the effect of genes on disease -- there is a lot we still don't know."

What health workers have begun to understand, though, is that some of the health problems already associated with HIV may be more of a concern in black people than other ethnicities. Take hepatitis C, for instance: Many people with HIV, especially those who were infected by sharing needles, also have hepatitis C, a virus that can damage a person's liver. Because the liver is the organ that processes those powerful HIV meds, coinfection with HIV and hepatitis C, in Dr. Cargill's words, "presents a double whammy."

Hepatitis C itself also appears to have its own unique dangers for African Americans. In the past, Dr. Cargill says, doctors believed that hepatitis C affected black and white people in the same way. "Then all of a sudden it was, 'Um, well, it seems that perhaps it is a little bit different.' And now we're at the point where it's, 'Oh, gee! Not only is it "a little bit different," but it's a whole different genotype'" -- a unique strain of the disease. This strain, Cargill says, was found to be less responsive to hepatitis C treatment than other strains, presenting a special problem for African Americans -- especially those who are infected with HIV as well.

Unfortunately, this means that for African Americans, "when you undergo this [hepatitis C] treatment regimen, which in and of itself is no day at the beach, there is a little bit of a deck stacked against you until we get better therapies," Dr. Cargill says. However, she points out that people shouldn't avoid treatment because of these findings -- it's just that the unique aspects of being black and hepatitis C positive complicate matters.

The same holds true for obesity, a U.S. epidemic in its own right. "Obesity is very common among all Americans, but it is especially acute in the black community," Ms. Johnson says. "Studies have questioned whether we have a genetic predisposition toward obesity -- for example, by looking at people in West Africa, where most African Americans originated from. But what they're finding is it's primarily lifestyle -- our diets, smoking, family history."

Obesity can cause an increase in "lipids," or body fats like cholesterol and triglycerides, which can in turn increase a person's risk for heart disease. Given that some HIV meds also increase these lipid levels (you can read more on this in the Do HIV Meds Work Differently in African Americans? section), this makes obesity all that much larger a concern for African Americans with HIV.

Does the Health Care System Discriminate Against HIV-Positive African Americans?

Many HIV-positive African Americans report being happy with the quality of care they get from their doctors. Almost all of the folks in our Profiles in Courage section, for example, say they're getting the best care possible. Sure, they're mostly a group of empowered, informed HIVers, but they didn't start out that way -- they put in hard work and overcame high barriers to get there.

Unfortunately, according to a pioneering report, "HIV/AIDS: A Minority Health Issue," written by two leading HIV specialists, Dr. Victoria Cargill and Dr. Valerie Stone (both of whom are black), African-American people with HIV generally report being less satisfied with their HIV care than their white counterparts, particularly when it comes to communication with their doctor. Black HIVers more often say their provider doesn't listen to them, doesn't ask them the right questions and doesn't give them the time or the information they need to make important treatment decisions. In short, plenty of HIV-positive African Americans don't feel they're getting the care they deserve.

In their paper, Drs. Cargill and Stone write, "Surveys of HIV/AIDS providers have confirmed that [racial preconceptions,] ... biases and stereotypes affect providers' treatment decisions and result in a failure to prescribe HAART for some minority patients for whom HAART is indicated." They cite a study that compared the number of days between HIV diagnosis and the start of HIV treatment. It found that when people received their care from someone of the same race, the length of that pre-treatment gap was almost identical: 348 days for African-American patients cared for by African-American providers, and 357 days for white patients cared for by white providers. But when African-American patients were cared for by white providers, the gap increased to 459 days. That significant difference, Drs. Cargill and Stone write, is mainly due to bias and stereotypes on the part of some white doctors about how "ready" their African American patients are to start treatment -- and to take all of their meds on time once they've begun.

These prejudices can cut both ways: Not only do some doctors discriminate (consciously or not) against HIV-positive African Americans, but some African-American HIVers let their own biases cloud their relationship with doctors as well. "We know that some black people bring mistrust of the medical system into their clinic visits," Dr. Adimora says. This makes it all the more important for African Americans to educate themselves about HIV, she adds: "It's my job, as a provider, to give people information and to earn their trust, [but] it really helps people when they enhance their own learning and bring that into the clinic visits too."

Are African Americans Less Likely to Take Their HIV Meds?

The ability to take all of your meds on time, nearly all the time -- which is known as adherence -- is one of the keys to ensuring that HIV treatment works. "All the studies say that you need to have greater than 95 percent adherence [to HIV meds] in order to reduce the risk of resistance," points out nurse practitioner Bethsheba Johnson. When HIV develops resistance to meds, they may not work as well in a person's body. "There are so many other diseases you can get by with a lower adherence rate -- like high blood pressure, diabetes -- but with HIV, adherence is extremely important.

"Unfortunately, we have a lot of indigent African Americans. If you don't have the basic necessities in life, you're not gonna be worried about taking a pill. It really is important to have food to eat, a place to shelter. Those are the basic needs of a human being before we can even talk about medication."

Do HIV Meds Work Differently in African Americans?

Drs. Cargill and Stone report in their 2005 paper, "HIV/AIDS: A Minority Health Issue," that in the early years of the epidemic, when Retrovir (zidovudine, AZT) was widely prescribed, some black HIVers experienced a disconcerting side effect: hyperpigmentation, or darkening, of the nails and skin. "This inadvertently [gave] credence to the belief that the drugs either do not work, or work differently in racial and ethnic minorities," the doctors write. "As a result, the treatments may and have presented providers and their minority patients with side effects previously unappreciated or unanticipated. ... And the health care system, already mistrusted, is further perceived as being unresponsive or hostile to the needs of the minority patient."

In reality, HIV meds usually appear to work the same way whether a person is black or white. Some assumptions have been disproven entirely, like with lipoatrophy, or the loss of unusual amounts of fat in the face, arms, legs or butt. "It used to be thought that African Americans were not as affected by lipoatrophy or facial wasting," nurse practitioner Bethsheba Johnson says, "but now that more and more are on these medications, I don't [think] that is true. We're seeing pretty much the same rate of lipoatrophy now."

The real problem, health care workers seem to agree, is not that HIV meds themselves work differently in African Americans. Instead, it's that African Americans are already at a higher risk for some of the health problems that HIV meds are known to cause or worsen.

The real problem, health care workers seem to agree, is not that HIV meds themselves work differently in African Americans. Instead, it's that African Americans are already at a higher risk for some of the health problems that HIV meds are known to cause or worsen. Ms. Johnson explains: "African Americans in general have high [rates of] hypertension, diabetes and cholesterol. So given that baseline, they're already at risk, and then you have the HIV meds, which makes it worse."

However, there are cases in which HIV meds truly do appear to work differently in African Americans than in other ethnic groups. "There is some evidence that the bodies of African Americans metabolize -- process -- certain medications differently," Dr. Cargill says. "We're also beginning to understand that there may be gender and hormonal issues. So we're just beginning to scratch the surface of all the gender and race differences that will influence these hormonal and metabolic effects."

In their report, Drs. Cargill and Stone note that the HIV medication Retrovir often causes anemia, an important concern for African Americans because of the high prevalence of anemia already in the black population. And because a high proportion of African Americans are coinfected with HIV and hepatitis C, the potential liver problems that HIV meds can cause is another big red flag. (See the Is HIV Disease Worse in African Americans? section for more on this.)

Recently, much attention has also been paid to the HIV medication Sustiva (efavirenz, Stocrin) -- a drug well known among HIVers for its tendency to cause sleeping problems and wild dreams. (Sustiva is also one of the medications included in the once daily combination drug of Atripla [efavirenz, tenofovir, FTC].) For most people, these side effects (if they occur at all) tend be mild and don't last more than a few weeks. In other people -- particularly African Americans -- Sustiva side effects appear to be stronger and last longer.

Researchers think that differences in metabolism explain why African Americans may be more likely to have more intense side effects from Sustiva. "With Sustiva, African-Americans tend to be over-represented in the slow-metabolizer group -- and that's the group who have the drug accumulating in their bodies, and so they get the central nervous system side effects and the nightmares and all that," Dr. Cargill says.

Dr. Tebas points out, however, that this doesn't happen for all African Americans -- or even for most of them. "As a group, African Americans tend to metabolize Sustiva a little slower. But studies suggest that this is so in only 20 percent of black people," he explains. "So obviously there's no way of knowing when initiating therapy whether one patient will be a slow-metabolizer or not."

To make this complex relationship between HIV meds and race even more complicated, being African American can potentially protect a person from some of the side effects HIV meds are known to cause. In one large study, African Americans appeared to be at lower risk for hypersensitivity reaction (an allergic-like reaction) when taking Ziagen (abacavir) which is also contained in the combination drugs of Epzicom (abacavir/3TC, Kivexa) and Trizivir (AZT/3TC/abacavir).

Dr. Tebas pointed out a recent study that found African Americans on HIV treatment were less likely to develop high cholesterol and high triglycerides than HIV-positive people of other races. "That doesn't mean that African Americans don't get increased lipids, but on average the increases were less," he explains. "So in that regard, being African American probably represents a benefit to you, because you are less likely to develop high cholesterol and high lipids when you start HIV medicines."

Ultimately, although current signs suggest there are few differences when it comes to HIV meds and race, there are still many more questions than definitive answers. "We've done most of our drug studies in the United States in white men," Ms. Johnson points out. "So now we're starting to look in depth at how specific HIV medications affect African Americans differently by increasing the diversity of people enrolled in clinical trials. This will enable us to begin to get a grip" on some of these differences.

"But it's very hard to tease out all the complicating factors -- adherence, substance abuse, other medications -- that contribute to the effectiveness of HIV meds in any single person," Ms. Johnson warns. "It's not a reason to withhold any particular antiretroviral therapy, such as Sustiva, in African-American patients, of course. We just have to monitor them more carefully -- and work on making sure adherence is as high as it can be."

These myths "have one common thread," Dr. Cargill explains. "Black people have been consistently disenfranchised, poorly treated, always last in line to get anything -- we won't even talk about Rosa Parks and the bus -- and based on that history, a reasonable assumption is, 'When it comes to us, we're the last ones to get care.'"

Are Any of the Other Myths About HIV and African Americans True?

"There are two huge myths about treatment that persist in our community," Dr. Cargill says. "The first one goes something like this: 'They have a cure for HIV disease and they aren't telling us because we're black. If you've got enough money, maybe you can get it -- because look at Magic [Johnson], he's okay and his wife said he was cured.'" Dr. Cargill is unequivocal in her response: "There is no cure for HIV disease," she emphatically states. Magic's wife also apologized not long ago for any statements she may have made that implied that Magic was cured.

"The second myth, which is equally troubling, is 'They have some sort of vaccine or something out there, but they're not going to give it to us,'" Dr. Cargill continues. She's equally straightforward about her response: "There is no vaccine for HIV."

Nurse practitioner Bethsheba Johnson has heard her own share of mistaken assumptions. "There are a lot of myths about where HIV comes from: mosquitoes, polio vaccines, a government plot to kill all African Americans. I hear those things repeatedly," Ms. Johnson says. "I also hear that the HIV medications cause more harm than good, that they just help you die quicker."

These myths "have one common thread," Dr. Cargill explains. "Black people have been consistently disenfranchised, poorly treated, always last in line to get anything -- we won't even talk about Rosa Parks and the bus -- and based on that history, a reasonable assumption is, 'When it comes to us, we're the last ones to get care.'"

The best way to overcome these assumptions, health care workers agree, is by urging African Americans to educate themselves about the virus and the medications used to treat it. "There are always the rumors that go around, misinformation between patients," Ms. Johnson says. "We try very hard to educate patients on the benefits and the risks of taking medications, so that they're not confused by hearing about side effects that someone else has had. That may frighten them from taking the medication in the first place."

In Dr. Cargill's mind, though, it's not just about education: It's about overcoming a deeply held mistrust that, she worries, may lead some black HIVers to avoid care that they urgently need. "It is one thing to experience overt individual or institutional racism, none of which is acceptable," she said. "But it is another to be the architect of your own demise."





Reader Comments:

Comment by: COL (Mich) Sat., Mar. 3, 2012 at 8:20 am EST
You frame the question , Are Africans less likely to take there meds, yet you never actually answer the question. You sort of identify the struggles for adherence, but do they or don't they? and why? is it distrust , economic, both ?
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Comment by: Jacob (Irvine) Wed., Nov. 16, 2011 at 9:04 pm EST
Is against the law if a homosexual who is Hiv Positive to have sex with me if I am Hiv negative even he use condoms? I want to know and find out. It's just a question. Thanks for paying attention. With much love, Jacob.
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Replies to this comment:
Comment by: Dee Dee (Charlotte, NC) Fri., Nov. 18, 2011 at 9:59 am EST
If both parties are consential adults than the answer is no. The flip side of that if you EVER decide not to use condoms, the answer is yes.


Comment by: Wes (Ann Arbor, Mi ) Tue., Oct. 12, 2010 at 5:38 pm EDT
Black people are being deceived in part by the entertainment industry and religious leaders. Some of them are very hateful towards gay people and think that HIV is a gay disease so are scared to get tested. Black people need to just not let what other people (especially whites) tell them in the entertainment industry stick and need to look for a religion that doesn't teach ignorance like Hinduism or something. STOP BEING SO GULLIBLE THAT IS THE ANSWER.
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Replies to this comment:
Comment by: Dee Dee Richardson (Charlotte, NC) Fri., Nov. 18, 2011 at 9:53 am EST
It is 2011 and there is still IGNORANCE and a Lack od EDUCATION in the world. These type of remarks is why individuals aren't getting tested. I am the Peer Access/Peer Coordinator of Regional AIDS Interfaith Network in Charlotte, NC. We work with individuals who are affected and infected with HIV/AIDS. Lack of EDUCATION is the reason why a lot of people aren't getting tested. Once they STOP listening to individuals like this and start getting the truth about what's going on then they get tested. I work my butt off on a daily basis to educate individuals to educate themself from reputable sources than television, radio or others. Because there are individuals who would take this remark and run with it. I need for you to get educated so you can stop telling myths and start telling facts. Be careful what you post because you could really harm someone's life in them believing this. I am an African American female who have been diagnosed for 20+ years. I work full-time, full-time student (obtaining my bachelors in Community Health) and a full-time mom of two (which both are HIV-) so who is really gullible????


Comment by: candance stone (Birmingham Ala) Sat., Mar. 27, 2010 at 11:42 pm EDT
I am a nursing student and i noticed the high number of african mericans with aids. it is sad to see people are not informed as to the treatment not cure for aids. people sometimes are in total denial. Aids testing should be mandatory testing for everybody. one can only imagine the people with aids and continue to spread it. Not only should testing be mandatory but positive results should be piblic information.Treatment should be afforable and swift.
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Comment by: Adrienne B (moss point , ms) Fri., Nov. 20, 2009 at 10:11 am EST
Why are african americans getting the HIV virus more than whites?
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Comment by: JJ (St. Louis) Sun., Jun. 21, 2009 at 7:55 pm EDT
I believe that we as "African Americans" need more education. The black, strong warrior do not believe in condoms and the black female do not enforce the use. I have had men say "I do not have HIV", but have never been tested. Since I moved to MO, I have met more and more people with HIV/AIDS then in other states. Most African Americans do not believe in the very thing that can save their lives. Wearing a condom. Most of us do not want to work out our relationship with a partner of 15 years or so because there are so many available women looking for a man. We as a strong race should stand by our spouse or mate and stop having casual sex in order to fulfill a temporary desire. Some many black men and women only want sex for a night, they do not want a life long partner. The black people needs to change their mindset because the way that we think is the killer. We are doing it to ourselves. We needs to stop think and react as if we have the education and common sense that is needed to survive in 2009. Husbands, guy friends, women, wife, girlfriends need to stop having multple partners without protection and stop using home remedies. The average black woman will not get a annual pap smear done, the average black man is too scared to have blood drawn to get himself tested. The average black individual will have all the symptoms of HIV/AIDS and say, "I just got a cold". The world needs education because they just do not understand how deadly HIV/AIDS is and they rather play ignorant. Too many are dying unnecessarily because of lack of education, health care and compassion for our fellow man or woman.
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Comment by: Annette (Germany) Tue., May. 12, 2009 at 8:41 am EDT
Here are the most simple answers: A strong black man dosen't need to get tested for HIV 'cause "I don't have it. I'm clean". Not getting tested or using condoms leads to a much later (if not too late) testing. The virus had done the damage already and AIDS develops faster. Therefore the HIV mediacal treatment starts too late...

It's a circle and has nothing to do with the skin color but the attitude. For example: Back in the late 80's I had unprotected sex with a black man. He gave me a vaginal infection. Telling him about it and handing him the medication for himself his reply was:"You got it from someone else. You messed around on me 'cause I'm clean". Military service members (black, white, latin a.s.o.) are not using condoms on regular bases at all! Thinking 'cause of the tests in the Military they are "untouchable". So so wrong. How do I know? I did get it from a black military service member 12 years ago. And nothing has changend since than. I notice it almost every day by working on a military base. Start to educate people and stop making such differences 'cause the virus is blind and dosen't care about color, race, age or education. We need to start using comment sense -- each one of us.
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Comment by: Acintia Wright (San Diego, CA) Mon., Apr. 13, 2009 at 6:26 pm EDT
I am inspired by the articles that I am reading. I have been reading this web site for a while I am touched that we as a people are not coming together like the ol' gay white boys (I don't mean any harm) did in the past to help come to a consensus regarding these questions that are written here? We often as a people look for the answer to come from some one. WE ARE THE ANSWER! Let's work together and eradicate this epidemic in our community.
Would love to hear from any one on how we can walk together to get answers...
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Comment by: Kirk (Dallas,TX) Mon., Apr. 6, 2009 at 10:51 pm EDT
I am a firm believer that empowerment is the issue. HIV/AIDS flourish in depression and hopelessness. It is very important to work proactively with our doctors but it is also good to do all natural things as well: eating healthier, exercise, adherance, vitamins, spirituality, etc. I think there are many more stories of success and real-living than falling victim to this virus. It may live inside us but it is not us.
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Comment by: porshae (hesperia,CA) Thu., Mar. 5, 2009 at 3:42 pm EST
this article has educated me enough for me to know that i will always have protected sex because i do not want to be another african american victim. I really do wish that more african americans well try to educate themselves so that we can minimize the HIV and AIDS death rates
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Comment by: Andre Howard (Durham North CAROLINA) Mon., Jan. 5, 2009 at 2:14 am EST
I lived with this thing since 1984 then it was only HIV in 1997 December I was diagones with AIDS
since then Ive taken good care of myself and my numbers change all the time what I would like to share with you is that The diseae lives with me not I with it changes in my life style are some of the most important things that I've had to
deal with to insure that I stay healthy all total 25 plus years and I'm still here I belive in Empowerment for myself and others like me we cannot give up and let this disease take us down. Become Enpowered and get in the game of living you and I are not dying we are living proof and still we rise
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Comment by: margaret johnson (Bronx, NY) Mon., Oct. 20, 2008 at 11:47 pm EDT
i have a daughter that has lived with the virus since 1994 and she was doing well with the fact that she had the virus. Now in 2008 the virus has moved from HIV to AIDS. She used to be a strong spirited person and now all that is gone. Her body hurts a lot now more then before. I do feel that the virus runs through African-Americans more than whites. The treatment is not all that good. My daughter needs some place she can go to talk with someone that is walking in her shoes. That support would be good. It will help her learn how to live with the way the break downs in her body and what to do.
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