Finding Seven: Strategies & Opportunities
Finding Seven: Primed For Engagement
The experts we spoke with weighed in on a variety of policy proposals, including condom distribution, testing and partner notification. While the public has not thought about or even generally heard about these or other specific proposals, we find that they are willing to discuss these issues and consider trade-offs, showing opportunity for further engagement.
In addition to talking about reducing stigma and providing targeted education as important in solving the AIDS epidemic, experts provided a wealth of alternative strategies to prevent the spread of HIV, and they did not always agree. For example, experts were divided on the issue of consent for HIV testing. Some saw consent forms as a barrier to getting tested, but others saw them as not only crucial for keeping one’s HIV status confidential, but also important in maintaining a trusting relationship between health care providers and patients, which may be compromised if people are tested without consent.
One expert working in a women’s organization advocated reduced barriers to testing, saying, “[A]ny time you have an extra ’thing’ to go through, it can be overwhelming, it can discourage people from feeling comfortable going through the process. And when you look at HIV and how it disproportionally affects low-income, no-income, people of color—communities that have been disenfranchised in many ways—there’s also a disproportionate level of illiteracy. All that put together, it makes it even tougher, putting up all these different little barriers.”
Another public health official also thought that written consent leads to fewer people being tested and more people spreading the disease unknowingly. She sees a problem in the fact that many people who are diagnosed with full-blown AIDS have “been in contact with the health care system repeatedly and they haven’t been tested, because people don’t want to have to find another piece of paper and get somebody to come in and talk to you about it.”
Others believed that consent is a civil rights issue. One government advisory board member did allow that “it could be informed consent” because he feels that “there should be an opportunity for the patient to opt out, for them to be given information about HIV/AIDS, how it’s spread, et cetera.” However, the director of an HIV law and policy organization disagreed and emphasized the need for written consent, saying, “If [consent is] not documented, you might as well say you can test [without consent], because if there isn’t an actual legal requirement for documentation, there is no question that people will be tested without their knowledge.”
Similarly, some of our experts disagreed on the issue of partner notification by doctors. One tried to put herself in the shoes of her organization’s grantees—women living with HIV—saying that partner notification would be “crucial” for them, but she recognized the inherent tension with that approach. She says, “It’s a slippery slope for me, personally…but if I were to relay the message of [my grantees] across the country affected by HIV, I think they would say that partner notification is absolutely crucial.”
Impressions Of HIV/AIDS In America
Finding Three: Fears About Transmission
Finding Four: Cause, Effect, & Stigma
Finding Five: Focus On Education
Finding Six: What About A Vaccine
Finding Seven: Strategies & Opportunities
Community Profiles
Another expert said that partner notification must be voluntary and encouraged—but not required—by health care professionals, for a reason similar to the need to keep written consent in HIV testing—that it is better for an HIV-positive individual, and others, to have a trusting relationship with their health care providers so that they will stay in care. This civil rights attorney pointed out that “this is an area doctors need to be careful about because there’s a huge downside to a doctor breaching their patient’s confidentiality, not just because it’s an issue of ‘Are they legally allowed to do that?’—which they might not be—but also there’s consequences, because if a person doesn’t trust their health care provider, they are much less likely to get into care or stay in care.”
The idea that HIV-positive individuals should have trusting relationships with their medical providers so that they stay in care touches on a general approach to HIV prevention. This approach focuses on taking care of people with HIV in order to prevent transmission of the virus. The CDC has coined this the “serostatus approach” to preventing HIV, and it can include providing HIV medicine, treatment of other illnesses, mental health care, drug treatment, sterile syringes and housing for those who are HIV-positive.1
Some of these approaches—such as providing sterile syringes to drug users—could also be used to prevent HIV in those who are HIV-negative. As mentioned previously, some experts said that providing HIV medication to people with HIV is an important prevention strategy, as it can lower a person’s viral load and can reduce that person’s risk of transmitting it to others.
A public health official we spoke with also advocated this multifaceted approach by saying, “[W]e need to also deal with other underlying issues that are more immediate, which is the fact that many people use drugs, and if we don’t do drug treatment, trying to tell them about HIV when they’re trying to go get high is not going to work.” The Institute of Medicine has stated, “For injection drug users who cannot or will not stop injecting drugs, the once-only use of sterile needles and syringes remains the safest, most effective approach for limiting HIV transmission.” And the director of an HIV law and policy organization maintained that “[h]ousing is one of the most important prevention initiatives that one can take.”
Some experts also talked about the need to talk about sexuality more openly, not only in the form of more comprehensive sex education for the public, but also in educating health care professionals involved in HIV testing to be more comfortable addressing sex. One activist talked about society’s aversion to talking about sex. She said that “there’s a chill effect in talking honestly about sexuality in this country. There’s been hardly any research on sexuality. We don’t know much about how people have sex in this country, so you end up with AIDS organizations internalizing the stigma about sexuality period, saying stuff like, ’If you are going to have sex, use a condom,’ as if it’s an abnormal thing to do. Ninety percent of people have premarital sex. How much of that is known by the public and AIDS service and health providers? We don’t invest in strategies that support healthy sexuality.”
Another expert talked about the problem in terms of health care providers more specifically. The director of an HIV law and policy organization pointed to a survey of physicians, showing that “two of the primary reasons [physicians don’t offer HIV tests were] because they didn’t feel like they understood, they didn’t feel comfortable…asking questions…or they didn’t know what to do with people once they tested positive.”
With a low awareness of HIV/AIDS in the United States, it makes sense that the public gravitated toward solutions that they can easily grasp, such as raising awareness through education and medical breakthroughs in the form of a vaccine. Yet when we brought up a few specific proposals, people often had an opinion. Unlike the experts, they based their opinions not on any evidence or experience, but on the values and beliefs that were most important to them. We believe that this demonstrates that the public may be ready for a discussion and perhaps even willing to consider funding for some HIV/AIDS specific proposals.
For example, on the issue of testing, some participants really saw mandatory testing as a matter of practicality, saying it made sense to treat testing like anything else in health care, and it would be better for people’s health just to find out. A woman in Birmingham said, “I think it’s ridiculous to have to sign a consent form. If you’re sick, you’re sick. If you go in for a sinus infection, do you sign a waiver to be treated for it?”
Another participant, in New York, said, “The sooner you catch it, the better off you’ll be.” They thought that at the very least, doctors should always offer the test. One woman in Des Moines talked about placing the initiative on the doctor rather than on the patient. She said, “I think if someone’s asked, they’ll say yes more likely than if they have to ask the doctor themselves. Maybe they’re embarrassed about it and they don’t want to ask, but if someone asks straight out, then maybe they’ll have more courage to say yes, if that’s something they want to do.”
Others were more concerned about privacy, maintaining that there was a benefit to extra barriers to testing. Some participants were very thoughtful about the emotional difference between knowing one’s status without fully understanding what is happening as opposed to being an active partner in agreeing to be tested. One woman in Des Moines said, “I think [testing] should be something you have to agree to... You don’t feel comfortable letting that information out there where anyone might get it.” A woman in Westchester put it this way: “I think that as an adult, you should be able to consent to the different tests that you’re having… I wouldn’t want to just get a random phone call.”
A similar tension played out on how much follow-up should be practiced with HIV/AIDS patients to ensure that they are following their drug regimen and are doing well overall. Some participants stressed autonomy for HIV/AIDS patients, suggesting they need to be self-reliant at some point. One woman in Birmingham saw forcing people to follow treatment as futile. She said that “if [HIV/AIDS patients] don’t want the help, you’d just hope that the majority decides to take the help. The ones that don’t want the help, well, you’re not going to be able to help them if they do.”
Others stressed compassion over responsibility, acknowledging that some HIV/AIDS patients are people in difficult situations. Support groups were very popular in the New York group. One woman thought support groups “should be an option if you want to go do it,” and a man in the same group said that “you’ll need support, like for anything in any situation you got to have support.”
Participants in Westchester County, N.Y., even discussed how there should be more locations for support groups so that people don’t have to risk being seen by their neighbors and face discrimination. One participant in Westchester suggested that counseling “should be more private—like one-on-one counseling with a doctor and patient. That’s something that don’t get tax dollars.”
When it came to the role schools should play in addressing the issue, particularly concerning condom distribution, there were again mixed views. Participants largely supported sexual education in schools, though many emphasized that parents need to take an active role in educating their children about HIV.
Some parents supported messages of abstinence along with education about safe sex. In Des Moines, a woman said, “We got to teach them to have protected sex. Abstinence is a great thing if you can convince them to be abstinent… [But] make some of the things [condoms] available to them [in schools so] that they can protect themselves.” But another Westchester parent thought that “no one’s going to do as good a job [at education about sex] as my wife and I will.”
Some drew the line in handing out condoms in school, because it might suggest that schools condone sex. A man in Birmingham elaborated this thought when he said, “I do think you can supply them with the information, maybe. To give out condoms, to me, is in a way…saying that ‘we suggest you don’t do it, but just in case you want to, here it is.’”
Some participants in New York maintained that kids are too embarrassed to ask for condoms in school anyway. One man said, “You can get a condom, but the question is are you actually going to look at your girlfriend and be like, ‘Yeah, you know, why don’t we walk over to the nurse and get a condom, let them know we’re going to have sex.’ There’s a lot of kids just don’t want to do that.”
When asked about distributing free condoms outside of school, participants were almost unanimously supportive. In Des Moines, one woman mused, “I don’t see why [condoms] shouldn’t just be available [outside of school], go to the pharmacy counter anywhere and walk in any clinic and a big bowl of them or whatever.”
[1] Janssen, R.S., et al. “The Serostatus Approach to Fighting the HIV Epidemic: Prevention Strategies for Infected Individuals.” Atlanta: Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention, 2001.
