Living with HIV/AIDS, part 2

Clare Howard

The Client Advisory Board at Heart of Illinois HIV/AIDS Center is a club no one should want to join.

"When you join this club, you don't ever get out for the rest of your life," said a CAB member in his early 50s. "Some people want to feel part of a group. I'd say to them 'choose another group.' If I had the chance, I would."

Members of CAB are the HIV-positive patients treated at the center.

Another CAB member, Christina Henry, has devised a six-point checklist to keep people out of the club. Her points address all prospective inductees.

Everyone who wants to avoid this virus can be successful, Henry said, stressing, "This is 100 percent, completely preventable. We are not going to stop people from having sex and taking drugs, but we can eliminate transmission of HIV. We've got to get at all the links in the transmission chain and cut them. That's the ideal."

Henry, 51, is the daughter of a physician, sister of a physician and once considered going into pre-med. She is not in any high-risk category. Learning she was HIV positive was "surreal."

No. 1 on the List: Condoms.

"Insist on a condom no matter who you are with. A lot of women get infected from their husbands," she said.

She would like current TV ads for medication for male dysfunction to be mandated to include information on use of condoms.

"The sexuality is advertised, but the protection is not," she said.

Brook Lampkin, HIV health educator at the Peoria City/County Health Department, said first and foremost she teaches abstinence and self-respect, but condom use is part of her comprehensive sex-education curriculum. Latex condoms, not natural condoms, are an effective block to the transmission of HIV virus, but they have to be used properly. Lampkin teaches about male and female condoms.

No. 2 on the List: Education

"Ignorance is dangerous," Henry said.

Lampkin agrees.

"My dream is (Peoria) District 150 will let us in the schools, starting with high school freshmen, let us teach health classes through the senior year," she said.

All federal funding for sex education in public schools is tied to an abstinence-only approach though eight states have decided to turn down federal money, believing abstinence-only is not effective. Programs receiving federal dollars are prohibited from discussing methods of contraception including condoms except in terms of failure rates.

In Peoria, public school students are sent to the Hult Health Education Center for part of their sex education. Hult teaches an abstinence-only curriculum.

Joseph Knapp, executive director at Hult, said he is satisfied with the abstinence-only approach and would not favor changing it even if federal funding became less restrictive.

"Instruction should not teach or 'promote' condom use. We look at a more holistic choice," he said. "We talk about risk, and the best method to prevent disease is abstinence. For ninth-graders, we teach the ABCs of STDs and HIV. Our message stresses abstinence before marriage. We strengthen family communication."

Chris Owens, associate director at Hult, said, "We teach parents how to be 'askable' parents."

Knapp said he is concerned when the term "comprehensive sex education" is tied to condom and birth-control instruction. He said the Hult approach is comprehensive.

"You need to understand an abstinence program is not just abstinence from sexual activity but is about lifestyle, alcohol use, drug use, peer pressure, relationship skill-building," he said.

Lampkin teaches a curriculum devised by the Centers for Disease Control and Prevention. In one of her classes she asked students, African American males ages 14 to 19, who are at risk of HIV/AIDS.

"They said gay white males, especially ones from San Francisco," she said. "I told them to look around the room. Any one of you could be HIV positive. This is not about being gay. This is not about any stereotype."

Lampkin said some students think oral sex is either safe sex or not actual sex at all.

"Oral sex is a big thing with this young generation, and it's a big HIV risk . . . also a big risk for STDs," she said. "Older guy with younger girl. He says OK you're a virgin, let's just have oral sex . . . and Lord forbid if she brushed her teeth and has cuts in her mouth."

Cassaundra Powell, health educator with Planned Parenthood, teaches classes in some Peoria schools with funding through the Peoria City/County Health Department.

"Prevention comes down to education. The United States of America is one of the most backward nations when it comes to sexuality. We need comprehensive sex education in our schools," she said. "We have to work on self-esteem and healthy relationships. There is a lot of ignorance about AIDS, and it's only through education that we eliminate that."

Even though the black community is the highest growing segment of the population becoming positive, Powell said people in every segment of the population are at risk.

Joyce Harant, president/CEO of Heart of Illinois Planned Parenthood, said: "Public schools are supposed to be the equalizer of education, and District 150 is not. Hult is not. Many children in Peoria are not being raised by their parents. We need the schools to teach them, not to teach someone's agenda."

Ken Hinton, superintendent of Peoria public schools, said his administration is talking with the Peoria City/County Health Department on ways to be more proactive.

"My view of sex education for children is to be prudent and provide as much information as we can without slipping over the line and infringing on the rights of parents," he said. "If nothing is done, if these numbers are rising, then the status quo is not acceptable. We have to link up with the community to see what can be done."

The Illinois State Board of Education confirmed that Illinois accepts funding at both ends of a continuum from federal money tied to abstinence only as well as money from the CDC which can be used for comprehensive sex education that is also referred to as abstinence-based or abstinence plus.

Dr. Tim Bias, pastor at First United Methodist Church, said HIV/AIDS "cuts across all economic groups, all political groups, all classes. In my opinion, we can't turn our back on this problem. We can't ignore it until it affects us personally. I think the church should be right in the middle of it."

No. 3 on the List: Needles

Transmission of HIV among injection drug users in Illinois declined 42 percent from 2000 to 2005, correlating with a 2003 state law signed by Gov. Rod Blagojevich that allows adults to purchase up to 20 sterile syringes without a prescription. Monitoring has shown no corresponding increase in intravenous drug use after this law.

"Maybe it's distasteful to say we should provide clean needles. But if we can't prevent drug use, we can make clean syringes available," Bias said. "If you think it's irresponsible to hand out condoms and syringes and decide not to because of your moral and ethical beliefs, and the disease spreads, maybe that's irresponsible."

He said it's a concern to him that a coalition of churches and schools throughout the community has not formed to work on prevention of the spread of HIV/AIDS.

"One way to start addressing this issue is to hand out things to prevent the spread of this virus," he said. "Ideally, abstinence is the way, but we already know we are fallen human beings. Part of our human development and activity is our sexuality."

He does not see any inconsistency in teaching values and abstinence and also teaching about condom use.

"I don't see that as a contradiction. I can hold a standard of abstinence, but how do we protect people?" he said. "It is not contradictory to help people prevent the spread through condom use."

The Illinois Department of Health contracts with the AIDS Foundation of Chicago to inform adult injection drug users about their right to purchase syringes without a prescription. Pharmacies also participate in a program for turning in used needles and preventing them from ending up on the streets. For a list of participating pharmacies, now more than 1,000 statewide, go to the foundation Web site at

No. 4 on the List: Testing

The CDC reports 1.2 million Americans are living with HIV/AIDS and about 40,000 new cases are transmitted each year, but in 25 percent of those new cases, people don't know they are positive. The CDC recommends nationwide routine testing.

"We will eventually get to universal testing. The cost benefit analysis is easy. Testing is not expensive," said Dr. David Slagle, medical director at HIHAC. "We need to make HIV testing part of routine care so we can identify those who are positive and don't know it."

People can be HIV positive for 10 years before symptoms lead to diagnosis, he said. During that period they can continue to unknowingly infect others. The test is a simple mouth swab, and results are available in 20 minutes.

"People perceive AIDS is not a death sentence as it once was, so people are less rigorous in practicing safe sex. That attitude is most acute with youth," Slagle said. "Young people think they are immortal, and they'll live forever. I know a great deal about HIV. As a medical director, I see sick people, but I am not trained to go into the community and be a counselor. HIV needs to be out there as a topic of discussion much more than it is."

No. 5 on the List: Know your partner's status

Henry was in a long-term monogamous relationship.

"He thought if he didn't have symptoms, he couldn't give the virus," she said. "When people don't get tested, they can convince themselves they don't have the virus.

"So insist on condoms no matter who you are with and insist on testing. Know your own test results and know your partner's. Don't let this become a question of trust. Know the facts."

No. 6 on the List: Vaccine

Research into a vaccine is difficult because the virus is constantly mutating. If a person contracts the virus from someone who has already gone through some drug treatments, the virus has already developed some resistance. The virus and treatment varies widely from person to person.

Henry was able to go one year from her diagnosis before she had to start on a drug regime. Another CAB member said he went 10 years from diagnosis to needing to start drug treatment. Another said he went five years, and another said he had to start medication immediately.

Drug treatments cost about $2,000 a month and must be constantly monitored and adjusted as the virus learns to overpower the combinations.

"There are no long-term studies on these drugs. We are the guinea pigs. These drugs have not been tested longer than three or four years," one CAB member said.

"Which I don't mind," Henry said. "We need these drugs to live."

Outside the List

One category of HIV transmission may be outside Henry's six-point checklist: Bug chasers.

There are anecdotal stories about these people, but no statistical documentation, according to John Peller of the AIDS Foundation of Chicago.

The term refers to people who try to infect themselves.

Slagle said some homeless youth are bug chasers, seeking an HIV positive diagnosis as their ticket to support services.

Lampkin said she recently tested one inmate at the Peoria County jail who was disappointed with his negative test results.

"That means he's back on the streets when he gets out," she said.

A CAB member in his early 50s who has experienced health complications just shook his head at the notion of bug chasers. Then he spoke of his dilemma about telling his parents about his HIV.

"We've had a couple of suicides at HIHAC," he said. His own HIV positive status is known by his son and former wife but not by his elderly parents.

"My younger brother died of a heart attack. My mother stews and frets about everything. It was driving me crazy not telling my parents my status, so I finally decided to tell them. It was a beautiful summer night. We were sitting outside. My mother was worrying about a niece. About a brother. She turned to me and said, 'You're the only one I don't have to worry about.'

"That made my decision for me. This disease speeds up things we'd normally not get until our 70s and 80s. We get those now in our 40s, 50s ... arthritis, bad heart, neuropathy. I don't wish my parents to die, but I don't want them to bury another son."

Clare Howard can be reached at 686-3250 or