"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."