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.
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.
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. 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.
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."
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."
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. 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."
"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."