This story originally appeared on Medill Reports on June 4, 2009 and was part of a news package, co-written by Kristian Weatherspoon and Alina Dain
Adolescents and young adults are contracting AIDS at rising rates compared to other age groups and the availability of better treatment may be increasing the risks by lulling fears.
Cases of AIDS increased nationwide among teens by 16 percent from 2006 to 2007, the most recent year for which statistics are available, according to the Centers for Disease Control and Prevention.
Cases increased by more than 20 percent for young adults ages 20 to 24 in the same time period, the fastest paced increase among Americans, CDC figures show.
“The psyche at that age is, I’m invincible, it’s not gonna happen to me,” said Bethsheba Johnson, a nurse practitioner who runs the Luck Care Center on the South Side with her husband, Dr. William Johnson. “We have to work against that.”
Primarily, Bethsheba Johnson said she is seeing more young men come to the center. "They usually come in for one or two visits and they disappear until they get really sick," she said. "So getting them in and keeping them in treatment is the problem."
Because new treatments have been so successful allowing patients to live much longer than they would have in the 1980s and 1990s, getting the disease isn’t perceived as an immediate death sentence.
While the prevalence of HIV and AIDS continues to increase overall, so does the survival rate. In 1995, more than a thousand people died of the disease in Illinois. In 2002, that number was down to 380 deaths.
Unfortunately, this has caused people to be more lax in terms of prevention, says Norma Rolfsen, a family nurse practitioner with The Care Program, part of the Chicago-based Research and Education Foundation of the Michael Reese Medical Staff.
“I know often people will say that it’s not such a big deal, that it’s like diabetes and personally if I don’t have to get diabetes, I’d prefer not to,” said Rolfsen, whose clinic treats HIV and AIDS patients physically and psychologically. “HIV is a big deal, the treatments are so much better, that is absolutely true, but I think we need to focus much, much more on prevention because it’s a very difficult illness to live with, and a difficult illness to treat.”
Almost 30 years after AIDS swept across the U.S., killing victims in a rapid and painful death, aspects of the disease such as treatment methods have transformed from scant to effective. These treatments are allowing patients to live for many years with HIV/AIDS.
In 1981, the year the disease was identified, there were four reported cases in Cook County. By the end of the decade, that number had increased to 897, according to the Illinois Department of Public Health. The most recent figures show that there are 28,367 people in Cook County living with HIV and or AIDS.
AIDS and the virus that causes it, HIV, were first identified after gay men became sick with what was thought to be a rare form of cancer, according to the Centers for Disease Control and Prevention. Research was done over the next several years to determine testing, treatment and prevention for the disease.
In 1987, a drug called Zidovudine, an antiretroviral medication was approved for treating HIV. Antiretroviral medications work to stop the transcription of viruses like HIV from replicating.
“When I first started, I saw lots of people die from AIDS because the medications were harder to take and there were more pills a day to take, with a lot more side effects,” said Dr. William Johnson, an internal medicine specialist. “Also, knowledge was not as solid as it is today.”
There are currently around 30 different highly active antiretroviral therapy drugs approved for the treatment of HIV and AIDS, with many others in development.
“Now, we have a lot more tools to know which medications work versus which ones don’t work than we did say 10, definitely 15 years ago,” said Dr. Johnson. “So we see a lot of promising benefits for those who have HIV.”
In groundbreaking research, doctors at the Children’s Hospital of Philadelphia have recently developed a vaccine that blocks the replication of SIV—the simian version of HIV—in monkeys. This development may eventually lead to a vaccine that fights HIV. However, the researchers recently reported the journal Nature Medicine that such a vaccine is far from a realization.
“Although these vaccines could be promising, they are in the beginning stages [of development] and we wouldn’t see results for another 15 to 20 years,” Dr. Johnson said. “Most people who are on their medications won’t die from HIV and can have a normal lifespan. I’ve seen a difference from when I first started [practicing].”
During the early 1980s, the lack of knowledge and public understanding regarding HIV/AIDS manifested itself as fear.
“It wasn’t just a medical fear, there was a real political and social fear of the categories of people who were affected by AIDS,” said Jennifer Brier, an associate professor of gender and women’s studies and history at the University of Illinois at Chicago.
People weren’t sure of how AIDS was spread—some thought you could get it from a toilet seat, or being sneezed on, Brier said. Lack of knowledge led to “profound systemic discrimination” of the groups of people that were most noticeably afflicted first.
“The first groups that were marked as being affected by AIDS, which is different than what was actually happening, were often referred to as the four H’s,” she said. These four groups included homosexuals, hemophiliacs, Haitians and heroin IV drug users, though some people also added "hookers" to the list, Brier said.
As the 80’s progressed, people infected with and affected by AIDS successfully changed the way huge institutions, such as the federal government and the medical and pharmaceutical industries approached AIDS. These actions made it “all but impossible for [the federal government] to ignore the problem,” Brier said.
Progress has been made in the almost 30 years since the identification of AIDS, but Brier thinks there is more that needs to be done.
“I would say there is perhaps more awareness, but I don’t know if we have done the kind of work necessary to fundamentally address how we could limit the spread of HIV,” she said.
Not enough discussion on what really causes AIDS, and how difficult treatment is can create a sense of “apathy,” leading some to believe that it is a curable disease, Brier said.
Teenagers are becoming victims of this thinking, according to Bethsheba Johnson.
At the Luck Care Center, students from a nearby high school come in for free condoms, and once they are convinced to get tested, some leave with the unforeseen news of infection.
“Not only do they get the free testing, but they get the counseling that goes with it,” she said. “A lot of our kids come from single parent homes and they don’t have a parent who can dedicate that time to educate their children.
“There’s no discussion between the parent and the child about what it takes to be sexually active. We don’t have open discussions with our children like we should,” Johnson said.
One of the biggest misconceptions is people who say they don’t know anyone with HIV, Rolfsen said. In a city like Chicago, most people know somebody with HIV. They just don’t know they do.
“People still die of HIV,” Rolfsen said. “We talk a lot about treatment and about how long people can live, but people still die from HIV and from AIDS.”