March 19, 2003 -- It seems that complacency is getting the better of the fight against HIV/AIDS.
After years of relative stability, the Centers for Disease Control and Prevention reported in February that new HIV/AIDS cases in the United States have risen for the first time since 1993.
Between 2000 and 2001, the estimated number of new diagnosed adolescent and adult cases rose from 40,766 to 41,311 — approximately 1 percent.
The rise was small, but researchers warned that it could be a harbinger of worse times ahead and a signal that americans are no longer so afraid of HIV. One of the greatest obstacles doctors and health officials are battling in the war on virus is complacency — a perception that no one really dies from the disease and that the illness is no longer a real problem in the United States because advances in treatment have enabled people to live much longer.
"It's been a complacency on many levels," said Dr. Donna Futterman, pediatrician and director of the Adolescent AIDS Program at Montefiore Medical Center in New York.
"It's been a complacency in the perception that AIDS is not a problem here anymore, but something exotic that's out in Africa," she said. "There's been a complacency in getting AIDS education out there. And there's been complacency with us in the medical community. Most of us have relied on patients to come to us when we really have to go out there and find them."
Off the U.S. Radar Screen
Health care providers have been frustrated in their efforts to get AIDS prevention measures out in the public in consistent massive campaigns.
In the early years of AIDS' nearly 22-year history in the United States, AIDS was front-page news, at the forefront of American consciousness. From the thousands of lost lives — which included the deaths of Hollywood stars such as Rock Hudson and The Brady Bunch's Robert Reed to the high-profile diagnoses of Magic Johnson and Greg Louganis, the nation almost could not help but be AIDS aware. AIDS ribbons seemed to adorn every lapel.
Now, it seems that AIDS ribbons are only dusted off during various annual charity walks. HIV/AIDS no longer makes news in the United States because fewer people are dying. According to the CDC, AIDS-related deaths dropped 70 percent between 1995 and 2001 — from 51,670 to 15,603.
Advances in treatment have enabled people to live longer with the illness. In recent years, the HIV/AIDS has only generated headlines in stories referring to the epidemic and growing AIDS orphan population in Africa.
"HIV/AIDS in society as a whole seems to have dropped off the radar screen," said Futterman.
"You don't see condom commercials unless it's really late at night," she said. "People are reverting to their old practices and not being careful about their behavior. Even at the Grammys, I didn't see one artist wearing an AIDS ribbon; everyone is so preoccupied with the [looming] war [with Iraq]. Sexually active people ages 13 to 24, for a number of reasons, don't view it as a morbid disease that people die from and that, in part, comes from lack of attention to the topic. … It takes a tremendous amount to mobilize a community to HIV/AIDS."
With AIDS off the U.S. radar screen and the perception that it is no longer much of a threat, experts say people have reverted to reckless sexual behavior. Over the past year, the CDC has investigated syphilis outbreaks among gay and bisexual men. There is also a fear that people are not getting tested and many more are walking around with the disease undetected.
In addition, younger AIDS patients may not fear the disease as much as older victims who have lived with it longer and seen their friends die.
"Many people saw their friends and neighbors get sick from the disease and then die and that motivated a behavioral change," said Dr. Jeffrey Fisher, professor of psychology at the University of Connecticut and a member of Yale's Center for Interdisciplinary Research on AIDS. "The question is what threshhold do you have to take it to effect behavioral change? Our research shows that information isn't enough. People need motivation and then the skills to enact change."
Still a Taboo
Dwindling media exposure and misperceptions about the disease are only some of the roadblocks in combating AIDS.
Lingering taboos regarding sex and some of the communities themselves have provided some of the most stubborn hurdles. Despite what may be a greater openness to sexuality in society as whole, certain communities — and some parents and teachers — still are not comfortable talking openly about sexual habits and sexually transmitted diseases.
"The community I serve has a lot of Haitian immigrants, and the families don't talk about those kind of things," said Dr. Michael Kolber, director of adult HIV services for the University of Miami School of Medicine.
"They're just not discussed," he said. "And then you have people who are dealing with issues such as drug addiction, poverty, homelessness, hunger … and all those factors play a role in [medication] compliance, access to prevention measures, getting treatment.
"Is it complacency? Or is it ignorance?" Kolber continued."Or can complacency be the same as ignorance? I'm not sure."
In addition to families, couples still may find it difficult to talk about safe sex, despite the risk of STDs.
"As a society I think we do a fairly good job of getting the information out there, but a huge number of people still engage in risky behavior," said Fisher. "So, again, people need information, motivation and the skills — the skills to negotiate a sexual situation."
"In many situations, a person likes a particular sexual partner, but they don't want to alienate them," Fisher continued. "And sometimes when condom use is brought up, a person feels like something may be wrong with their sexual partner or that they may be sick. Trust is very important in a relationship and you want to be able to trust your partner. So, it is very important to have a positive attitude towards [AIDS] prevention. Often attitudes towards prevention are not very positive."
Perhaps that attitude and reluctance towards safe sex conversations have led to more women contracting HIV. Approximately 75 percent of the new female cases involved women contracting the disease through heterosexual sex.
"Some of the young women we've had here have gotten the disease from older, more experienced sex partners," said Dr. Larry Friedman, director of pediatrics at the University of Miami School of Medicine. "They just didn't have the experience and the courage to bring up either condom use or abstinence with their partners."
The Scales of Caution and Positivism
There's also been some conflict over what AIDS prevention message to send, particularly to young people. Schools are reluctant to teach about condom use and abstinence-only education to a dubious and sexually-curious teenage classroom tends to get more political support.
Physicians have a difficult task in treating their patients: giving them hope without making them over-confident and complacent. They must find a way to tell their patients that they can still lead productive lives while reminding them that they must adhere to their medication and that their disease is still fatal.
Advertisements for HIV medication often feature vibrant, healthy-looking people, telling its consumers that HIV/AIDS is not an immediate death sentence and that they can lead full lives. Pharmaceutical and healthcare company GlaxoSmithKline recently launched a campaign featuring Magic Johnson geared towards African-Americans who, according to the CDC, make up approximately 38 percent of all reported HIV/AIDS cases in the United States.
The campaign is running in cities with the highest rates of HIV/AIDS infection among black people, including New York, Los Angeles, San Francisco, Miami, Washington, D.C., Chicago, Philadelphia, Houston, Atlanta and Newark, N.J. In the first series of ads, the robust-looking NBA Hall of Famer says, among other things, that "HIV changed my life … but it doesn't keep me from living." Johnson also points out that a key to living with HIV was partnering with his doctor and finding a medication regimen that worked for him — and following it.
However, some critics argue that the ads are negligent for messages they do not send: That it is not a good idea to contract HIV/AIDS to begin with and that HIV/AIDS is still an incurable disease that kills thousands of people every year. And often lost in the ads is the reality that the medication is not easy to take, can have side effects, and that patients must following their strict regimen or risk developing a form of their disease that's immune to treatment.
And critics of the GlaxoSmithKline campaign have complained that their ads present Johnson as the face of a typical HIV/AIDS patient, which is misleading given his celebrity, wealth, access to the best medical treatment and superior physical condition and discipline before his disease.
"It's a good point," said Kolber."He [Johnson] is not the face of AIDS. He doesn't look like the people I see. … And the medication doesn't automatically enable people to live active lives. There are side effects."
Still, using Magic Johnson and various ads as scapegoats for complacency may be too convenient.
"I think it's fantastic that he [Johnson] is willing to put himself out there," said Dr. Futterman. "There's been a myth out there that he didn't go through anything with this disease and that's not true. … The roots of complacency on prevention are not in that fact that the disease has become easier to treat. Sexual topics are still very difficult to talk about and it's difficult to really try and effect change in people's behavior."
GlaxoSmithKline says reponse to its campaign has been mostly positive. However, after the criticism, GlaxoSmithKline unveiled a more measured Magic Johnson ad where he stressed that he was not cured of HIV, that the medication can have side effects, and that patients should work with their doctors.
GlaxoSmithKline representative Mary Faye Dark said that ad was not a response to any criticism but part of the campaign all along.
Combating the New Resurgence — Before It Starts
Part of affecting change is getting the message out there, either through mass media or perhaps members of the community.
"Here in the community I serve, we're trying to get more peer providers, get people working within the community … someone who can 'speak their language,' speak from the same platform, relate and deal with the same issues of homelessness, poverty as the affected population," said Kolber. "I could talk to the community but I'm a white man who wears a tie and I go home at night. … I've seen how it [HIV/AIDS] ruins lives, ruins families. We need to be upfront about this disease."
Still, in some cases, peer providers' greatest strength may also be their greatest potential weakness. They fight the same demons as the people they are trying to help.
"The danger with peer counselors, particularly with the teens we deal with, is that these individuals are struggling with the same issues as the people they are trying to help and can be prone to same behavior," said Friedman.
Unfortunately, if an apparent AIDS complacency is not dealt with, the new cases may only rise. Between 850,000 and 950,000 people are living with HIV/AIDS in the United States and there are approximately 40,000 new infections every year. Half of the newly-infected patients, the CDC says, are under 25 years old.
Besides the rising number of young people with the disease, the first generation of children born HIV-positive — once referred to as "AIDS babies" — are coming of age. If they are not fully educated about AIDS prevention and adherence to medication, they may only fuel a number of new cases in the coming years. And that may lead to resurgence in AIDS ribbons — for all the wrong and tragic reasons.