Since I began working as an HIV treatment educator in New York City, I've seen the faces of those I served change. As those faces grew to include primarily African-Americans and Latinos, I found myself both inspired and moved by my clients.
As a whole, they were deeply motivated to do as well on their treatment as possible. Many of them carried little cards logging their viral loads and CD4 counts. And they all knew their HIV meds like the back of their hands.
I found myself inspired by their desire to take charge of their health, but I also noticed that their journeys often had additional challenges. There was the fight to stay off the street, to stay off drugs, to find a place they could call home. Often there was a fight to repair their relationships with children, families, and loved ones. Many also had hepatitis C, diabetes, or high blood pressure. And many felt they just couldn't trust their doctors, perhaps due to their own experiences in the health system or from the shared distrust passed down from abuses like the infamous Tuskegee Syphilis Study (in which 399 African-American men were denied treatment for over 30 years).
In a nutshell, dealing with HIV meant dealing with each of these issues, in addition to the viral loads, CD4 counts, and medications I was used to talking about. While they shared the same treatment goals as everyone with HIV, their overall HIV and general health care needs were different. They were more complex, with many factors contributing to the overall picture. They included so many additional challenges that it made managing their HIV disease more difficult.
But I also noticed something else: Many of my clients found themselves frustrated with their treatment results. They just weren't reaching their goals. I, too, could see a difference. In some of my most adherent clients, I saw CD4 counts go up more slowly than I expected. Or the viral loads would linger just above undetectable -- low, but still high enough to be picked up by the test. This made me wonder if there was a difference in the way African-Americans respond to HIV treatment. My experience and gut told me yes.
What I have found since my early days working in HIV is that there are indeed differences between ethnic groups, especially African-Americans, in the way they experience and respond to HIV and its treatment. Many of these differences have been documented in the scientific literature. This article will attempt to lay out the studies and findings that support my personal experience with African-Americans living with HIV.
African-Americans continue to be the ethnic group most affected by HIV. According to the CDC, almost 84% of new HIV cases in 2006 occurred in African-Americans, even though they make up only 13% of the U.S. population. In one study of men who have sex with men, African-Americans were nine times as likely as Latinos to become infected with HIV, and twice as likely as whites. In terms of sheer numbers, a higher proportion of African-Americans are feeling the impact of the disease than any other ethnic group in the U.S.
African-Americans with HIV also tend to have a harder time on treatment. The Women's Interagency HIV Study (WIHS) showed that African-American women taking HIV meds were less likely to reach an undetectable viral load and more likely to die than other women with HIV. In another study, researchers reviewing over 300,000 hospital admissions found that a higher percentage of African-Americans with HIV died of diabetes, pneumonia, and heart disease than did Latinos and whites. And both studies found that African-Americans were more likely to be depressed and to stop taking their medications. In fact, the WIHS researchers found race to be the strongest predictor of stopping meds. This left me asking one central question: Why?
Among the many reasons that African-Americans have a greater number of hospitalizations and don't respond as quickly or as positively to HIV treatment as members of other races is that they are more likely to be diagnosed with HIV later in the course of the disease. In one survey of almost 6,000 people with HIV in 16 states, not only were African-Americans more often diagnosed at a later stage of the disease, but they were more likely to be tested for HIV only after having symptoms. This is significant, since those diagnosed later, when their immune system is weaker, have a harder time lowering their viral load and fighting other infections. So this is one reason for the greater impact of HIV among African-Americans, but there are also others.
Another critical factor facing many African-Americans is access to care. In the U.S. it has been found that women, African-Americans, and those with a history of injecting drugs are less likely to receive HIV treatment. While improved access to care has been a target of many programs, it continues to be an issue for African-Americans. In one study of 968 people who stopped or never started HIV treatment, African-Americans were almost twice as likely to change clinics or doctors, and most stopped medications during the study. In addition, African-Americans were almost twice as likely to hide their HIV status, showing that the stigma of HIV may be an obstacle to taking medication.
African-American women in WIHS reported significant levels of depression, but the study found that they were less likely to receive mental health treatment than other women. Other studies have shown that poverty, inadequate health insurance, racial discrimination, and mistrust of the medical establishment make access to care difficult and in some cases impossible. Age is also a factor -- at the recent Conference on Retroviruses and Opportunistic Infections (CROI) in Montreal, Alexandra Oster of the CDC reported on a study showing that age may be associated with limited access to care. When she looked at why 556 women with HIV had missed their first or annual Pap smears (a screening test for cervical cancer), she found that older age and lower CD4 counts were highly associated with not having the test. This is of particular concern, as we are seeing more people over 50 living with HIV.
African-Americans are also often battling other diseases while living with HIV. From 1997 to 1999, the HIV Research Epidemiology Research Study (HERS) followed 1,300 women, mostly African-American, some of whom had HIV and some of whom did not. What they found was that there were fewer hospitalizations due to HIV than in earlier years, but the women with HIV in the study were hospitalized more often due to liver disease.
Co-infection with HIV and hepatitis C virus (HCV) has also affected African-Americans more than other ethnic groups. They are more often infected with HCV genotype 1, a type that is harder to treat, but that alone doesn't explain why they don't do as well on treatment. One study of standard HCV treatment (interferon and ribavirin) found that significantly fewer African-Americans responded well than did whites, even though both groups had genotype 1. And this study was not the only one to find this. In another study, as few as 26% of African-Americans on treatment maintained an undetectable viral load for six months, compared with 39% of whites. A larger number of African-Americans also reported HCV complications and were more likely to suffer from liver cancer.
All this suggests that there may be genetic factors at play in some of the differences in response to treatment. One study found that African-Americans were more likely to have a genetic mutation called a CYP 2B6 allelic variant. People who have this mutation have difficulty breaking down Sustiva, which can build up in their blood and lead to more side effects like vivid dreams or difficulty concentrating. Not surprisingly, more African-Americans stop taking Sustiva, and that could lead to other problems. Having the CYP 2B6 mutation may cause Sustiva to linger in the body after it is stopped, increasing the risk of resistance.
ACTG 384, a study reported at the 2009 CROI, looked at 156 African Americans who had peripheral neuropathy (numbness or pain in their hands and feet). The researchers looked at the DNA of their mitochondria (the energy centers of cells). What they found was fascinating: people who had the L1c mutation in their mitochondria had a higher risk of having peripheral neuropathy. This mutation is different than one previously found among whites, and suggests there may be genetic reasons why different ethnic groups have a greater risk of certain side effects. A high number of African Americans (29%) experience peripheral neuropathy, and this research is the first step in understanding why. More studies are planned.
Another genetic factor found to affect the way African-Americans react to HIV treatment is the ApoC-III mutation. One group of researchers looked at gene mutations and the race or ethnicity of 626 patients enrolled in ACTG studies. While African-Americans had lower levels of triglycerides (a type of fat in the blood), those with the ApoC-III mutation had higher triglyceride levels after taking an HIV protease inhibitor. Latinos and other ethnic groups with this same mutation didn't see their triglycerides rise as high. This suggests that both race and genetics play a role in the way people fare on treatment.
African-Americans with HIV are also at greater risk for other illness and diseases. For example, one group of researchers from Baltimore noted that they were twelve times more likely than whites to develop end-stage kidney disease. This was true even for those doing well on HIV treatment. So HIV in itself seems to put African-Americans at greater risk for kidney disease, as well as diabetes and hypertension. In fact, a large European study (EuroSIDA) has found that people with HIV are more likely to also have diabetes and hypertension if they have kidney disease. Like the CDC study, they found this linked to lower CD4 counts, an AIDS diagnosis, and older age.
These results are disheartening, since African-Americans overall are harder hit by both diabetes and heart disease. Over 2.5 million African-Americans live with diabetes -- they are 60% more likely to have it than whites. African-American men die from diabetes complications 20% more often than do white men, and that number is 40% for African-American women. African-Americans are 30% more likely to die of heart disease than whites -- shocking, since in 1950, the two groups had equal levels of risk. There is no doubt that heart disease and diabetes are a problem even for African-Americans without HIV, and that these become further complicated by HIV.
The research is clear: African Americans face a host of genetic, physical and emotional factors that deeply affect their HIV treatment. While the CYP 2B6, L1c, and ApoC-III mutations have been found, there may be other mutations responsible for the differences in the way African-Americans respond to treatment. In addition, we also need larger studies to learn how best to modify treatment in people with these mutations. For example, one group started adjusting HCV treatment doses in African-Americans by weight. Another study of 362 African-Americans found that when their ribavirin dose was adjusted they were twice as likely to bring their HCV levels to undetectable and keep them there than those on the standard dose. Approaches like these may prove to be essential for African-Americans.
Much of this information supports what I already felt inside: that race does matter and that in many ways, African Americans experience HIV differently. So how do we address these differences? While it is clear that we need more information, the first step is acknowledging that there is a difference, and that it is complex. It is biological, social, and cultural -- a combination of factors that affects every African-American living with the virus. Some of the answers will come as more studies are done. Others will come from within each one of us, as we learn from each person with HIV and work to meet their needs.
Donna M. Kaminski, ACRIA's former Associate Director of Treatment Education, is a fourth year medical and MPH student.
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