Victims Live Longer – But Ignorance Lingers

Dr. Arif Sarwari, medical director at the WVU Positive Health Clinic for HIV and AIDS care, says the good news about his job these days is that he can tell people they will live -- and live long.

If ...

Brian Menear, education coordinator at Caritas House in Morgantown -- North Central West Virginia's only AIDS service organization -- says his job can help make that happen.

If ...

And Sharon Wood, executive director of Caritas House, ardent warrior against HIV/AIDS, and cold, hard believer of laying the cards on the table, says the battle to defeat this deadly disease can be won.

If, and only if ... people can get beyond their fears, face their ignorance and accept the truth that the human immunodeficiency virus and acquired immunodeficiency syndrome became everybody's problem a very long time ago.

"Even after 25 years," Wood said, "there's still a stigma attached. The not knowing who to trust is still huge."

On World AIDS Day 2008, commemorated today, Sarwari, Menear and Wood join health care workers and HIV/AIDS activists across the country and around the globe as they reiterate the message that, although good things have happened and medicine has vastly improved, the virus is still here, still spreading and still killing people.

We can stop it, they say.

But will we?

"Unless it hits home, a lot of people just choose not to listen," Wood said. "'I don't know anyone with HIV. Why should I be worried?' But you might know someone with HIV. It's everyone. There is no face. It's children. It's middleaged women. In the past few years, we've seen an increase in women ages 25 to 50.

"Our oldest client is 74, our youngest is 2."

Wood shook her head and recited once again from the catechism of AIDS: It's not just a gay man's disease. It's not just an IV-drug user's disease.

She sees the gamut of those with the HIV virus. Caritas helps with housing, medical referrals, transportation to doctor appointments and other client services. Wood knows AIDS doesn't discriminate.

"We have a couple babies born to infected moms in the past two or three months that we don't know [if the virus was passed on] yet. The 74-year-old was in her 60s when she was infected. The second man in her life infected her. Her first husband passed away. Then she met a man in church, thinking he was a good guy."

In its latest data analysis, released in October, the Centers for Disease Control and Prevention (CDC) reveals that an estimated 1,106,400 adults and adolescents were living with HIV infection in the U.S. at the end of 2006 -- and only about one in five of those people knew they were HIV-positive.

West Virginia, 40th among the 50 states, reported 726 cases of HIV as of December 2006. There are 1,456 reported cases of AIDS.

"People will ask why the AIDS numbers are so much worse," Menear said. "And it's because sometimes people don't even find out they're positive until they have full blown AIDS. You can skip the HIV list and go straight to the AIDS list."

Because several counties are grouped together when West Virginia takes account of how many people are HIV-positive and how many have AIDS, local estimates are hard to pin down.

But according to the West Virginia Department of Health and Human Resources, District 7A -- which includes Monongalia, Marion and Preston counties, along with three others -- has 50 to 99 cases of reported cases of HIV, and 50 to 99 cases of AIDS.

Chuck Anziulewicz, an HIV prevention specialist with the state health department for eight years, said the method of reporting and the lack of specifics have a lot to do with the stigma of AIDS. Some counties have such a low population that reporting county-by-county "can still cause a problem" with anonymity.

People could be singled out. Exposed.

Wood understands.

"We had to move a mother and daughter out of their community because the local pharmacist told some people at church what kind of medicine the mom was getting," Wood said. "So the next day, the townspeople are literally walking in front of their house with signs. And this was 2006 !"

Discrimination and ignorance aside, on this World AIDS Day, health workers say there's a healthy dose of good news, too.

Much better medicine is keeping diligent HIV and AIDS patients alive.

Sarwari treats some of them personally.

Every Wednesday, about 12 to 15 people show up at the Positive Health Clinic to be tested or treated for HIV or AIDS. A couple decades ago, you may have been able to pick them out.

But today, Sarwari said, it would be difficult to distinguish his clinic patients from anyone else who walks into the Physician Office Center by Ruby Memorial Hospital. Ninety percent of them are medically stable and report once every three to six months for blood tests and maintenance.

"Because of the way we started with HIV, we're much more familiar with people dying," Sarwari said. "That was the story of the '80s and early '90s. Now it's a very different story."

Today, he said, "It could be anybody. It's really no different than coming to any other chronic disease clinic, like diabetes. There's no stereotype person anymore."

Sarwari, who specializes in infectious diseases and HIV/AIDS, has worked with AIDS patients since the epidemic started in the early 80s. There's hope in his voice when he says that the changes he's seen -- especially in the last 10 years on the medical front -- are lifesaving.

"The biggest change is the fact that I can walk into a new HIV patient's room and tell them: If you do the right thing, there is no reason you can't plan to live out the rest of your life. If you take your meds, you can go to dental school, you can become a lawyer.

"There's no reason for HIV to drive your life," he said.

The life span of an HIV-positive patient has gone from just a few years after diagnosis during the early epidemic years to 25 years or more today.

"At the moment," Sarwari said, "some researchers suggest their lifespan may be normal."

Of course, the downside to this good news, said AIDS worker Anziulewicz, is complacence.

"My job is always changing, always evolving," Anziulewicz said. His mantra used to be: "Get treatment." Sometimes today it's: "Stay with treatment."

"Today people have a lot more medical opportunities," he said. "Death rates are down, and that's good. But then a lot of people stop paying attention. They think if they get sick, well, there [will] be something out there to cure me.

"Well, there is not a cure, and we don't expect one anytime in the near future."

Wood concurred.

"A lot of people get to thinking, well, I beat it," she said. "They're not seeing symptoms anymore, so they decide to go off their meds. They go two, three, four years and they'll be healthy. Then they catch a cold and within a few days it's bronchitis and pneumonia. Then their viral load skyrockets and they expect to be able to get some pills and fix it.

"Meanwhile the virus is mutating."

So the key to surviving AIDS, health workers say, is to be tested, to know your HIV status and to make the changes in your life that will promote improved health and longevity. Take your medicine and give up risky behavior.

Menear, who believes this wholeheartedly, will take his educational message about HIV and AIDS to anyone who will listen. Schools, churches, youth groups, homeless shelters, drug rehab facilities -- they've heard the talk.

The challenge is: Do they hear him?

"A lot of people still consider AIDS to be a homosexual problem, a homosexual issue. That's so far away from the truth. Yes, that group accounts for almost half of all infections. But hetero-sex is not that far behind.

"Kids are having sex more often and they're having sex earlier. The CDC estimates that every 9 1/2 minutes, someone is infected," Menear said.

Menear uses everything from AIDS education speeches to adults to HIV games for kids. He said a game he developed called "AIDS Jeopardy" reveals to kids just how little they know about the disease. The M&M game helps them see, with just a few yellow candies exchanging hands, how quickly the HIV virus can spread.

He said parents need to have a serious chat with their children about safe sex. "Everybody wants to believe their kids are angels," Menear said. "But most kids have sex when they're about 17." Surveys Menear has conducted show teens' knowledge about sex in general is "misinformed." One of the survey items was: If you had a question about sex, who would you turn to? The answers: 1. Friends. 2. Internet. 3. Doctor. 4. Parents.

"I asked them how many of their parents had talked to them about sex and it was about 50-50. And the parents who did didn't give them good information. Basically, they said, "Just be safe."

Menear is working toward a personal goal.

"I want zero new infections in my 25 counties in West Virginia," he said. "Is that an attainable goal? I think it is. Will it happen? No.

"If everybody was on the same page with education, prevention and knowledge, then that goal would be attainable. One day, I'd like to be out of a job."

Sarwari's wish:

"That people educate themselves to the point where we no longer create a stigma. The moment we start making judgments, it doesn't work. People need to understand it's just another chronic disease."

As for Wood, her list is long.

No fear.

No discrimination. No ignorance. No AIDS. "That we don't drop the ball," Wood said. "HIV and AIDS haven't gone away. Just because it's not in the newspaper every day -- just because people aren't dying every day -- we tend to think, well, we fixed that problem. But our phone rings every day. "And I'd love to see a vaccine developed, of course, if we can dream. "If we can dream."