More Seek HIV Tests, Many Don’t Follow Up : AIDS: O.C. health workers see 50% increase, but many takers don’t find out results or change unsafe behavior.

There is no palpable fear in the tiny room at the Santa Ana Planned Parenthood clinic, no anxiety in the eyes of the friendly 22-year-old woman with a needle in her arm. It will come later.

A health worker removes the syringe from the vein, assigns a number to the blood sample and hands a slip of paper with an identical number to her patient, Venus Danae Duron, a student from Santa Ana. She asks Duron to confirm that the numbers match. In two weeks, Duron will return to the clinic and present her number to a counselor.

It will be the counselor’s job to tell her whether her body harbors the human immunodeficiency virus.

Duron nods, smiles, laughs a bit nervously.

“I’ve had one partner for a long time,” Duron says, “but you never know. . . .”

*

Physically and bureaucratically, it’s a simple thing to take an HIV-antibody test. It takes only a few minutes, and at many clinics it’s free.

But it is a test fraught with deep portent, with complex meaning and psychological and social effects. It can define lives, renew them or alter them irrevocably.

In spite of the uncertainty and tension that often surround the testing process, more and more people, in a broader spectrum of “risk” groups than ever before, are facing up to the fact that the virus that causes AIDS is not specific to any population; that they may, at one point in their past, have put themselves in harm’s way.

Today, during a typical month at the Orange County Health Care Agency’s alternative HIV test site in Santa Ana, which handles most of the county’s cases, about 1,000 people will be tested for HIV and between 10 and 20 of those will be shown to have the virus.

The monthly testing total is also roughly 50% higher than the corresponding figure only a little more than a year ago, before Los Angeles Lakers star Earvin (Magic) Johnson’s announcement that he had contracted HIV. Such a dramatic shift in testing statistics has been common among local publicly funded HIV-testing facilities.

“I think people are recognizing that this is a silent virus and the only way they can find out if they’re all right is by testing,” said Bob Riveroll, the HIV coordinator at the Laguna Beach Community Clinic. “There is no such thing as high risk or low risk or medium risk anymore. It’s something that can affect any American.”

No one takes the test lightly. A positive result, although possibly not the absolute death sentence that it was considered to be a short number of years ago, still remains a source of deep fear. Still, for a variety of reasons, many are overcoming their apprehension.

“I think there’s been a marked change in the type of person coming in to get tested, in what we call, frankly, the really low-risk people,” said Peter Burrell, program supervisor for HIV testing and counseling at the county health care agency.

“It’s not uncommon for somebody to say they’re starting a new relationship now. They might say they had unprotected sex three years ago and they’re worried now, or that the condom broke. I’ve never heard of so many condoms breaking in my lifetime.”

Even married people, or couples who have been together for years, are testing.

“Even though they look and feel well today, and they’ve been together for a couple of years, they may begin to realize that both of them could by that time have the virus” as a result of sexual contacts they had had before they met each other, said Susan Sullivan, the HIV/AIDS education coordinator for the Orange County chapter of the American Red Cross.

The blood test required to obtain a marriage license in California does not include analysis for HIV, said Burrell.

More than any other population, women are lining up for the test.

“We’ve seen an incredible increase in single, heterosexual women come in here,” said Laura Harper, a pre- and post-test counselor at the Orange County Health Care Agency. “It’s not that they’ve had a great number of sexual partners, but that they’re antsy about it.”

Much of the increase in female testers, say officials, can be explained by the increase in the number and frequency of media stories and awareness campaigns tailored for a female audience. Also, said Harper, more women are realizing that they are more susceptible to an HIV infection in a heterosexual encounter than are men.

“What has been odd, though, is that we have not seen that much increase in heterosexual men coming in,” Harper said. “They’re still seeing themselves as not at risk. It isn’t as easily transmitted to them, but they assume that ‘not as easy’ means ‘not possible.’ ”

Many people who come for the test fall into a category health officials often refer to as the “walking worried” or the “worried well.”

“There are some who are completely anxiety-ridden to the point of being irrational,” said David Hoover, an early intervention social worker at the county health facility in Santa Ana. “Based on what they say they’ve been doing, it’s completely irrational for them to worry.”

*

It is the uncertainty--and the waiting--that can be the most wearing. Earlier that same day, a 25-year-old woman who had just taken the HIV-antibody test for the second time remembered with fearful clarity how she received her test results a year before.

The time she spent waiting for her number to be called “was the worst five minutes of my life,” she said. “I didn’t have any worries when I came in for the test, but then you start thinking about that time back then that you should have skipped. While I was waiting (at the clinic) I saw a little kid walk by and I thought, ‘I’m never going to have kids.’ ”

*

Sometimes, the fear of the consequences of the test can be blunted.

Increasingly common are people who come to be tested in groups: a bridge club, an office pool or a group of friends, said Penny Weismuller, the manager of the disease control division of the Orange County Health Care Agency. Sometimes, the mutual support that arises in these groups helps to dispel some of the uneasiness, she said.

Occasionally, the test is used--or, rather, misused--as a kind of absolution for unsafe sexual behavior. Test counselors are more than familiar with faces who show up for a test, like clockwork, every half a year. They know that the period between infection with HIV and the point at which it can be fairly reliably detected by the test--the accuracy level is about 97%--is six months.

“We do have a lot of repeaters,” Harper said. “When they test negative, they assume they’re immune. A lot of people have difficulty in modifying their behavior. They breathe a sigh of relief and six months later they’re back again.”

Taylor said that the repeaters “use the test as a validation that their behavior is safe, until they get caught. We had a gay man recently who tested 20 times, possibly. Then he came in and tested positive.”

In counseling, said Burrell, “I just have to repeat and repeat and repeat to them that what they’ve been doing in the past is not OK. They’ve been lucky.”

*

There is no light banter at the Planned Parenthood facility among counselor and patient. Neither is the talk somber; the counselors are easily spoken and matter-of-fact. The speech is, however, absolutely clinical, plain and direct. No one’s attention wanders for even a second. The patients nod often and blink rapidly, a sign that they are listening and thinking, hard. Body language is often tense: tightly crossed legs, tightly clasped hands.

“No one,” said Michelle Tibbs, center manager at the facility, “is more stressed out, no one is more wiggy than the patients who come in for HIV tests.”

*

At the county facility, the visit begins by following a blue line on the floor to a window, where the testers give their first names and ZIP codes to a clerk. They then move on to a small waiting room and wait until their names are called by a counselor.

The brief session that follows is a direct, dispassionate primer on the most baffling killer of our times.

“We do our HIV 101 course for everyone who comes in: what it is, how it’s transmitted, what are the risk factors, what they see as problems,” said Harper. “And we tailor a risk-reduction plan for each person. If they’re one of the ‘worried well’ we tell them to relax, that if (an unsafe sexual encounter) was seven years ago and they’re still asymptomatic, they’re probably OK.”

When the subject of past and present sexual behavior is broached, Harper said , there is surprisingly little reluctance to reveal the details.

“Most people have worked up to doing this, and for them it can be a real release,” she said. “They’ve been frightened about this AIDS thing, but they don’t want to talk to their friends or family members because of the stigma attached to it, and they’re scared. You can’t shut them up sometimes. Sometimes I hear things that I don’t want to hear.”

Identification numbers are then assigned and compared, and blood is drawn. Throughout, the person being tested is known only by a first name and a number.

There is more than one reason for the anonymity.

Apart from avoiding possible ridicule or discrimination that might result from full public knowledge of the person’s name and test results, an anonymous test also ensures that no medical records are available to insurance companies. Many companies, say health professionals, routinely deny health insurance to applicants who have taken HIV tests--whether the results are positive or negative.

“A record of an HIV test in a person’s medical records would mean that person has a pre-existing condition and may disqualify them for medical insurance,” said John Duran, a gay rights and AIDS attorney with offices in Anaheim and West Hollywood. “The result isn’t as important as the process. The record tells the insurance company that you may have engaged in high-risk behavior. It’s a health history issue to hang the disqualification on.”

But, said Walter Zelman, the California Insurance Commissioner’s special deputy on health issues, that’s illegal.

“I suspect that there are companies that try to get as much information as they can, legally or illegally,” he said. “But, under California law, even if the insurer knows you took the test, and even if the test was positive, it cannot be used to deny you insurance. We would really frown on a company doing that.”

Fear of insurance problems, however, mostly takes a back seat to the more primal anxiety over everything from the testing process to the effect of test results--whether positive or negative--on an individual’s future sexual behavior.

“Some of the fear in a lot of people is not just the fear of testing positive, but the fear of the process, the fear of coming in the building and having to ask someone, ‘Where do I get an AIDS test?’ ” Taylor said. “There’s the fear of having to sit down with someone and talk about risk behaviors, particularly if the individual might think the interviewer might see them as kinky or whatever.”

But the counselors have heard it all. There is no admonishment or judgment. And if a tester appears to be at low risk, “I spend a lot of time telling them not to sweat this thing out for the next two weeks,” said Burrell.

But they do. It is an almost universal reaction, say counselors, that apprehension will increase--sometimes to a high pitch--as the end of the two-week waiting period nears. Many testers work themselves into such a state that they can’t bring themselves to face the results, and so they never return for them.

Two of three women tested at the Santa Ana Planned Parenthood facility during a recent morning, one of them a 16-year-old girl, failed to return for their results.

Those who do come back often express great relief if the results are negative.

“I actually get more tears on the negatives than I do on the positives,” said Harper. “Usually it’s a great relief to them. But if it’s negative and the person is still wringing his hands, then we do some serious talking. I tell them that it’s time to let it go.

“Some people, I think, actually want to be HIV-positive. They feel really guilty about what they’ve done in the past and they may feel that if they were HIV-positive, it would be appropriate payment for their sins.”

Some testers, who may feel they have dodged the bullet, vow “never to have sex again, but I think that’ll last about six months,” Harper said. “A lot of people verbalize that, but I don’t think they actually carry it out.”

Positive tests sometimes are received with disappointed resignation if the tester has been engaging in high-risk behavior, Burrell said. However, added Harper, “every client is different. Some people just say, ‘OK, now what do I do?’ but some cry, some go completely numb and they’re not ready to deal with it. They’re in shock. It ruins your day to tell them.”

However, the counselors feel that they now have something to offer the positive tester, unlike their options during the first years of the epidemic.

Today, said Hoover, “we encourage them to set up an appointment somewhere for a medical follow-up. Early intervention is so important these days. There are so many more support and counseling groups available, and we encourage them to hook up somewhere.

“There’s a tremendous sense of loss of control, and if we can get them connected with medical professionals, they can tell them what’s going on with their bodies and let them know that they’re not going to die tomorrow--get them some control.”

*

Two weeks after her blood was drawn, Venus Danae Duron returns to the Planned Parenthood facility in Santa Ana, smiling nervously. After a brief wait, counselor Arthur Thompson emerges from his small office and escorts her inside.

“Just call me Art,” he says gently. He hands her one of his cards and motions her into a chair.

Thompson produces a large binder containing test results. Duron watches him closely, turning the business card around and around in her hands.

“OK,” says Thompson, holding out a sheet to Duron. “Do those two numbers line up?”

She compares the number on Thompson’s sheet to the one on her test stub. They match. Thompson points to a line on the sheet.

“This,” he says, “shows you’re negative.”

Duron nods. Her expression does not change immediately. She stops turning over the business card.

“I still feel kinda nervous,” she says with a small smile.

Thompson presents his part of the “AIDS 101” course: how HIV can splice into genetic material, what the hierarchy of risk behavior is, how the virus can and can’t be transmitted. He is easy, frank, patient.

Duron listens, hard, looking straight at Thompson. She nods frequently, smiles occasionally as she begins to loosen up. She thanks him and rises to go. She is smiling now.

But, weeks later, the two women who took the test on the same day as Duron still have not returned for their results.

Who’s Getting HIV Testing

The Orange County Health Care Agency has conducted anonymous HIV testing at its Santa Ana clinic since June, 1985. Here is an overview of the results as of September, 1992. The clinic performs more than 80% of all HIV tests in the county.

Number tested Male homosexual, bisexual 11,726 Intravenous drug user 5,227 Heterosexuals with multiple partners 16,429 Heterosexuals, homosexuals w/high risk partners 11,071 Blood transfusion (hemophiliac) 15 Blood transfusion (other) 1,551 Other Risk 2,891 None known or admitted 14,929 ETHNIC, RACIAL GROUPS White 39,620 Black 2,444 Asian 1,648 Other 771 Unknown 3,032 GENDER Male 40,741 Female 21,253 Unknown 232 AGE Under 13 51 13-19 4,244 20-29 28,951 30-39 18,910 40-49 7,537 50-59 2,617 60 and over 1,297 Unknown 232

% positive Male homosexual, bisexual 14.6 Intravenous drug user 3.3 Heterosexuals with multiple partners 0.3 Heterosexuals, homosexuals w/high risk partners 0.5 Blood transfusion (hemophiliac) 26.7 Blood transfusion (other) 1.1 Other Risk 6.7 None known or admitted 0.8 ETHNIC, RACIAL GROUPS White 2.8 Black 3.8 Asian 1.6 Other 1.2 Unknown 12.3 GENDER Male 5.0 Female 0.6 Unknown 7.3 AGE Under 13 2.0 13-19 0.9 20-29 3.7 30-39 4.0 40-49 3.0 50-59 2.8 60 and over 0.7 Unknown 7.3

*

WHO HAS AIDS IN ORANGE COUNTY

2,239 adults and 16 children have been found to have AIDS from the early 1980s through Oct. 31, 1992.

1,435, or 64%, have died.

Adults infected by: Cases Male homosexual / bisexual contact: 1,849 Intravenous drug use: 162 Heterosexual contact: 72 Blood transfusion (hemophiliac): 21 Blood transfusion (other): 51 Unknown: 84 Children infected by: Cases Blood transfusion (hemophiliac): 3 Blood transfusion (other): 5 Born to HIV-positive mother: 8 Race, ethnicity: Cases White: 1,772 Black: 71 Latino: 354 Southeast Asian: 17 Other Asian: 11 Other, unknown: 30 *

HOW O.C. COMPARES Infection rate per 100,000* Orange County: 21.7 California: 27.5 United States: 18.0 * As of October 31, 1992

Source: Orange County Health Care Agency;

researched by JANICE L. JONES / Los Angeles Times

A Primer on AIDS

Counselors at AIDS testing clinics are often asked:

Question: What is the difference between AIDS and HIV?

Answer: AIDS is an illness caused by HIV (human immunodeficiency virus), which weakens the body’s natural ability to fight off disease. HIV is transmitted during sex, blood transfusions or intravenous drug use.

Q: Does a positive test mean that I have AIDS?

A: No. A positive test means that you have been infected with HIV and could develop AIDS. However, medications such as AZT are available to bolster the immune system and prolong health for many years.

Q: I tested negative shortly after unprotected sex. Does this mean that I escaped infection?

A: No. The virus cannot be detected for two weeks to six months after infection. A second test should be performed after this window period has passed.

Q: I have been sexually involved with several partners over the past year but wasn’t dating them all at the same time. Does limiting myself to one sexual partner while in a relationship mean I am safe from AIDS?

A: No. Both heterosexuals and gays involved in a series of monogamous sexual relationships are still at risk.

Q: Is it possible that my AIDS test results were wrong?

A: AIDS tests are extremely accurate. But having a second test performed might be worthwhile for your peace of mind.

Q: Is it possible to get AIDS from oral sex?

A: Yes. Oral sex should be avoided or performed with a condom.

*

WHERE TO GET A CONFIDENTIAL HIV TEST

Appointments required at most sites. Some charge a nominal fee or require a small donation.

AIDS Response Program

12832 Garden Grove Blvd., Suite A, Garden Grove

Hours: 10:30 a.m. to 3:30 p.m. alternate Saturdays.

(714) 534-0961

Huntington Beach Community Clinic

17692 Beach Blvd., No. 209, Huntington Beach

Hours: 9:30 a.m. to 6 p.m. Monday through Thursday

(714) 847-4222

Laguna Beach Community Clinic

460 Ocean Ave., Laguna Beach

Hours: 9:30 to 11:30 a.m. daily, except Wednesday and Sunday; 6 to 7:30 p.m. Monday and Thursday

(714) 494-0761

Orange County Center for Health

503 N. Anaheim Blvd., Anaheim

Hours: 9:30 a.m. to 8 p.m. Monday through Thursday; 9:30 a.m. to 3 p.m. Friday

(714) 956-1900

Orange County Health Care Agency

1725 West 17th St., Santa Ana

Hours: 8:30 a.m. to 4 p.m. Monday through Friday

(714) 834-8787

Planned Parenthood (bilingual counselors available)

Costa Mesa: 440 Fair Drive, Suite T

Hours: 8:30 a.m. to 10 a.m. Tuesday through Thursday

(714) 751-6717

La Habra: 1480 S. Harbor Blvd.

Hours: 11 a.m to 7 p.m. Monday; 10 a.m. to 6 p.m. Tuesday; 7 a.m. to 3 p.m. Wednesday and Thursday; 9 a.m. to 1 p.m. alternate Saturdays.

(714) 738-4433

Santa Ana: 1801 N. Broadway

Hours: 8 a.m. to noon and 1 to 4 p.m. Monday; 1:30 to 3:30 p.m. Tuesday; 8 to 11 a.m. and 1:30 to 3:30 p.m. Wednesday; 7:30 a.m. to noon Thursday; 9 a.m. to 2 p.m. Friday.

(714) 973-1727

Garden Grove: 7915 Garden Grove Blvd.

Hours: By appointment only. Call for details.

(714) 891-0955

Mission Viejo: 26302 La Paz Road, Suite 103

Hours: 8 to 11:30 a.m. Monday; 6:30 to 11:30 a.m. Tuesday; 8 a.m. to 4 p.m. Wednesday and Thursday; 6:30 a.m. to noon Friday.

(714) 768-3643

Researched by JANICE L. JONES / Los Angeles Times

HIV Testing Up in 1992

HIV testing this year has been steadily higher than most months in 1991. A look at the trend in anonymous testing through September at the Orange County Health Care Agency, which performs more than 80% of all anonymous HIV tests in the county: Magic Johnson announces he is HIV positive Nov. 7, 1991 1992 Sept. 1,443 * Most recent information available

Source: Orange County Health Care Agency

Researched by JANICE L. JONES / Los Angeles Times