Finding Two: Empathy

Finding Two: An Empathy Toward Those With HIV

Though knowledge about HIV is low, people expressed great sympathy for what it may be like living with HIV/AIDS. They envisioned a life of loneliness and isolation for those who are HIV-positive. Their own frustration with the U.S. health care system also provided a starting point for the discussion. Experts also maintain that addressing problems in the health care system is essential to addressing HIV/AIDS and recommend systemic changes to the system, including increased access to treatment and the elimination of general health care disparities.

Most of our focus group participants imagined the hardships that those affected with HIV face in terms of personal relationships and mental well-being. One woman in New York wondered what if "you find out you have it, and then your family turns around and says, 'Look, I don’t want no part of that.' Now you found out you have AIDS or HIV and now you're alone. That just makes you feel awful." A man in Los Angeles voiced similar concerns: "A person with AIDS, even if it’s a loved one or friend or whatever, you’re going to distance yourself, because you don't know if you might get contact with it, or it may spread."

A woman in Birmingham thought about personal relationships more generally, saying, "People [would be] drawing away from you. They don’t want to have anything to do with someone who's infected.… I think that socially, it would just cut them off.” And a woman in Des Moines summarized what she thought it would be like by saying that "they sometimes will ostracize people that have [HIV/AIDS] because the fear is just like, 'I don’t want to be around you because I don’t know how to deal with you because you have HIV.'"

The public also understood that most people who have HIV/AIDS face financial hardships as well, with one man in New York focusing on workplace issues: "If you have a manager, they can just make up reasons [to fire you] and then back it up."

Participants often grappled with the disease by using their general views of health care as a starting point for discussion. We heard many people talk about their difficulties in dealing with their own health issues and imagined them to be as bad (or worse) for those with HIV. In Birmingham, a woman summarized her thoughts as, "I don’t think [it’s possible to afford medications]. I don’t have medical insurance, so I know how hard it is to try to find help to get anything." And a male there said, "[African-Americans and Latinos] are not able to go to the doctor and have health care and stuff like people with money do."

Participants also used Magic Johnson as a reference when describing how quality of health care is linked to a person’s income. A woman in Los Angeles said, "I think it’s manageable and treatable for the people that could afford it. I think it also has to do with social classes. Someone like Magic Johnson could afford to have those cocktails or whatnot. People that are in the lower brackets of income, they probably wouldn’t be able to afford those treatments."

This was echoed by a woman in Birmingham: "Take Magic Johnson, for instance. He was able to live this long and he is as healthy as he is because of the amount of money he has... I would think maybe his wealth acquired him better medicines than maybe the poor people. You might get some medicine, but it might not be as good as what he has."

Many experts agreed that not everyone in the United States who has HIV can get medication. As one activist told us, "[I]n this country, [it is] estimated that half the people who know that they are HIV-positive, and who fit the clinical definition to be on treatment, can't consistently get that treatment." In 2003, a study showed that only 55 percent of people aged 15–49 who were eligible for antiretroviral medication actually received it.¹

But experts tended to underestimate the public’s awareness of the gaps in HIV treatment. As our director of a national public health organization said, “I think there’s still a general perspective that [treatment is] available and everybody’s got it. I don’t think people understand that there are still populations that don’t have access to appropriate therapy. People believe that if you’re poor in America, Medicaid takes care of you, but it doesn’t.”

The president of an AIDS grant-making organization lamented, “In this country, people believe that we have good treatments, people believe that people who need them have them, and there is a general lack of coordinated communication about the realities of this epidemic... There are far too many people who do know their status and don’t have access to care: They don’t have transportation, they don’t have child care. And then there are people who don’t know their status, who obviously aren’t going to be in care.”

A survey in 2006 showed that 70 percent thought most people in the United States who need medication for HIV do not get it.² The outpouring of concerns we heard in our focus groups about the cost of treatment for HIV and health care, generally, shows that people are aware of the difficulties in securing adequate health care.

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