Anonymous HIV Tests Welcomed By AIDS Activists

In April 1995, a Harvard student, who wishes to remain anonymous, decided to get an HIV test.

His roommate, a member of AIDS Education and Outreach (AEO), advised him to get an anonymous test at Massachusetts General Hospital (MGH) rather than go to University Health Services (UHS) to get a confidential test.

The student had decided to be tested for HIV when his relationship with his girlfriend of three months became more intimate.

"You did what?" his girlfriend exclaimed in disgust when he admitted that twice the previous fall, he had gotten drunk and had unprotected sex with women he'd never met before.

The two agreed he should be tested for HIV before taking their relationship any further.

But his schedule, like most Harvard students, was overflowing with extracurricular activities. Between school, sports and ROTC, he had no time during working hours to take a 30-minute T ride to MGH, get tested and ride back. He was forced to wait until reading period in May.

But now, Harvard students desiring an anonymous HIV test no longer have to seek out local hospitals. As of Nov. 18, UHS is offering anonymous HIV testing in addition to confidential testing.

"The freedom to choose between anonymous or confidential testing is important especially in terms of discrimination," says Sarah E. Dryden '97, who became aware of the distinction when she took Bagnoud Professor of Health and Human Rights Jonathan M. Mann's course, General Education 103: "AIDS, Health, and Human Rights," in 1995.

The UHS anonymous testing program is the result of more than a year and a half of research and campaigning by campus AIDS activists.

Since the start of the program, anonymous testing sessions at UHS have been fully booked, and pre-test counseling appointments have spilled into January, says Carie Ullman Michael, assistant director for clinical operations at UHS.

As of Thursday, 17 appointments had been scheduled and 15 were kept in the first two and a half weeks of anonymous testing. Only one person waived the $10 fee, according to Michael.

Most students admit they don't know the differences between confidential and anonymous testing, according to two random surveys done by members of AIDS Education and Outreach several years ago.

Why Anonymous Testing at Harvard?

According to a 1994 U.S. Department of Health and Human Services publication on HIV testing, results of confidential testing "are known only to the person who is being tested and the immediate group of people who provide care and prevention services for that person. "The same guidelines define anonymous as "without any identification."

"Confidential means the results are written on your permanent medical record," says Tobias B. Kasper '97, former co-director of Peer Contraceptive Counselors (PCC), a member of the UHS task force on HIV policies and a volunteer at AIDS Action Committee in Boston.

This information cannot be released without the student's written consent, Kasper says. However, if the student does not consent to the release of his confidential file, the medical record may be noted as "incomplete."

Most students will have their medical records transferred as they leave their family insurance policy or move on to graduate school. Insurance companies could question an incomplete record.

"There is no particular reason to get a confidential test at our age," says Kasper. "Anonymous is much preferable. It's better not to have on your medical record. There are cases when people have been discriminated against, even if the results were negative."

Additionally, Harvard students have faced limited access to anonymous tests at sites funded by the Massachusetts Department of Public Health (MDPH) over the last two years.

In 1994, one-third of those receiving tests at MDPH-supported sites like Cambridge City Hospital were college-age students according to Linda J. Frazier, UHS health educator.

"[It's] very clear that for the college-age population testing is important," Frazier says.

Because funding to MDPH has suffered cuts, anonymous testing sites, including one at Cambridge City Hospital, now conduct phone screening to ensure that those who seek testing are in high risk groups, Frazier says. Phone screening actually works to encourage those at low risk not to test.

Although the Harvard student body includes such "high risk" populations as blacks, women, homosexuals and people under age 22, university students as a group are considered low risk, according to Kasper.

Whereas one in four new HIV infections occurs in people under age 22, only one in 500 university students is HIV infected, Frazier says.

Implementation

In response to these observations, the Undergraduate Council a year ago passed a resolution, written by Kasper, calling for the implementation of anonymous HIV testing at UHS.

The resolution sparked a meeting last February between UHS personnel and representatives from AEO and PCC. The task force created during that meeting issued a report on May 21 recommending that "...UHS establish and provide anonymous HIV testing and counseling services. ..."

After deciding to implement that recommendation, UHS administrators turned the report over to an implementation team. In order to ensure students' anonymity, the team "really had to bypass most of our systems," says Michael, a member of the task force.

Everything about the anonymous testing procedure must be standardized. "The only difference between anonymous and confidential testing is on the medical record, not in the quality of care or information available," Frazier says.

Students must call for an anonymous testing appointment during regular business hours, like any other appointment scheduled at UHS. But no identifying information is asked.

The student schedules two appointments, one 45-minute session for pre-counseling and to take the blood sample, and one 15-minute post-test counseling session scheduled for two weeks later.

When a student arrives at the fifth floor testing site, the counselor, a specialist from Cambridge City Hospital, takes him to a private room where she conducts the pre-test counseling. She conducts a standard questionnaire of risk assessment, asking questions like: Why do you want to be tested for HIV? Have you ever used intravenous drugs? Have you ever had anal sex?

The student receives a bar code, which is his only form of identification. He must bring it back to get the test results.

In the post-test appointment, the student talks to the same counselor. If a student feels he is not ready to know the test results he may choose to return later. When the student decides to see the results, the counselor shows them to him with no previous knowledge of their status; they see the results together for the first time.

Students are assessed a $10 fee, which can be waived for those who are unable to pay.

The fee is the "last point of contention," according to Marco B. Simons '97, director for Social Responsibility for the Undergraduate Council.

Michael insists the issue is "not on the table with the task force." However, other members of the task force continue to express their conviction that the testing should be free.

The fee is not meant to defray the total cost of the program to UHS, which the task force report estimated to be $32,004 annually.

UHS administrators decided to absorb the cost, but to impose the fee in the interest of cost effectiveness. Acting on models provided by other universities offering anonymous HIV testing, such as the University of California at San Diego, UHS imposed a fee to maintain a low "Did Not Keep Appointment" rate, according to Michael.

Other members of the task force said they support the fee because they hope students will make an investment in the process and not treat the program frivolously.

The Undergraduate Council passed a bill this fall allocating $1,000 to cover the costs of the first 100 students to be tested, according to Simons.

But Frazier believes "HIV is more serious than a raffle," adding that the council's allocation would be more useful if spent on a needs basis, to cover those students who need to waive the fee.

Still, Simons is adamant in his position for free testing. "In my opinion, we should make it as easy as possible for any student to get an HIV test," he says.

He says that the current nature of HIV services at UHS -- in which confidential testing is free and anonymous testing requires a fee -- creates the perception that UHS is essentially charging for anonymity.

Confronting Discrimination

For some, the advantages of anonymous HIV testing have proven invaluable in the effort to combat HIV- and AIDS-related discrimination on a broader scale.

In 1985, when general HIV testing was first licensed in the United States, AIDS was largely considered a homosexual disease. Although the advent of testing services represented a significant step for those at risk, it also immediately raised issues of confidentiality, according to Mann, who worked at the World Health Organization in the mid-1980s.

HIV-infected people were kicked out of their houses and jobs, they were denied the ability to travel and to marry, Mann says.

"AIDS carries a stigma, so people would not go for testing if it's confidential," says Joshua D. Bloodworth '97, who organized the conference on AIDS among young blacks and Latinos being held today at Sever Hall and the Science Center.

From the perspective of the World Health Organization, "discrimination is undermining public health," Mann says.

In an effort to fight discrimination and encourage those at risk to be tested, Oregon became the first state to move its testing services from confidential to anonymous, Mann says.

But while anonymous testing works to make HIV testing more accessible by alleviating fears of discrimination, it does not actively reduce the incidence of HIV- and AIDS-related discrimination, he says.

"One thing we've learned is that most of it is not AIDS discrimination," Mann says. "People are using AIDS as an excuse toward underlying discrimination. For many people, the big force is not AIDS, it's homo-sexuality."

The Rev. Carol Johnson, a third-year student at the Divinity School, helps people prepare to deal with AIDS in ministry. She says she finds that dialogues about HIV- and AIDS-related discrimination "continually end up negotiating the stigma" among groups already struggling to overcome society's prejudices.

"Even as AIDS has evolved [and changed its concentration from specific demographic populations], the groups that it affects now have added to them the burden of AIDS-related discrimination," Mann says.

Still, HIV- and AIDS-related discrimination remains a problem in and of itself because of persisting fears about issues such as living with an HIV-infected person, Johnson says.

Despite students' knowledge about how HIV is transmitted, they may still feel discomfort when they imagine sharing bathroom space in the dorms with a person infected with HIV, says Johnson, who founded Harvard's annual GospelFest for AIDS, being held tomorrow in Memorial Church.

"I don't think it will go unstigmatized until there's a cure for it," Bloodworth says. "I don't think testing -- anonymous or confidential -- will change the stigma."

Mann says that in addition to improving treatments and education, "one of the [most important] factors of increased tolerance is knowing someone who is infected -- dealing with a person you know and not an abstraction," he says.

Founded in 1992, GospelFest devotes a portion of its program to inviting audience members and others in the room to share a moment of remembrance for loved ones who have died of AIDS by calling out their first names.

Johnson says that the first year, an audience of several hundred took five minutes to call out the names. The second year, the audience spent 15 minutes calling out names. And last year, the audience called out names for 25 minutes.

As evidenced by the increasing number of people remembered at GospelFest, the impact of AIDS and HIV is increasing in the Harvard community.

According to Frazier, this impact must be measured not only by the number of students infected with HIV, but also by those affected by HIV. While one infection for every 500 students seems a small figure, Frazier estimates that for each person infected with HIV, there are two or three others who are affected.

Harvard AIDS activists express concern about the impact of the rate of infection among people under age 22.

"We are losing people in their early productive and reproductive years," Johnson says. "We have to factor that loss into our vision of the 21st century, and it is a cost factor that becomes weighty for society as a whole."

Kasper says this total societal cost "adds to the significance of HIV testing in a young community like Harvard."

AIDS & HIV FACTS SHEET

One in four new HIV infections occurs in people under age 22.

AIDS is the leading cause of death of all Americans aged 25 to 44.

70 percent of those infected do not know their HIV status.

In the past year, on average, one American was newly diagnosed with AIDS every seven minutes.

An estimated 35,000 Mass, residents are infected with HIV and four to five more become infected each day.

While few women were infected with HIV a decade ago, they represented 39 percent of all new HIV infections in 1995.

In 1994, one in every three deaths among African-American men between 25 and 44 years old was due to HIV-related illness.

Source: AIDS Action Committee of Massachussets, Inc

Most students will have their medical records transferred as they leave their family insurance policy or move on to graduate school. Insurance companies could question an incomplete record.

"There is no particular reason to get a confidential test at our age," says Kasper. "Anonymous is much preferable. It's better not to have on your medical record. There are cases when people have been discriminated against, even if the results were negative."

Additionally, Harvard students have faced limited access to anonymous tests at sites funded by the Massachusetts Department of Public Health (MDPH) over the last two years.

In 1994, one-third of those receiving tests at MDPH-supported sites like Cambridge City Hospital were college-age students according to Linda J. Frazier, UHS health educator.

"[It's] very clear that for the college-age population testing is important," Frazier says.

Because funding to MDPH has suffered cuts, anonymous testing sites, including one at Cambridge City Hospital, now conduct phone screening to ensure that those who seek testing are in high risk groups, Frazier says. Phone screening actually works to encourage those at low risk not to test.

Although the Harvard student body includes such "high risk" populations as blacks, women, homosexuals and people under age 22, university students as a group are considered low risk, according to Kasper.

Whereas one in four new HIV infections occurs in people under age 22, only one in 500 university students is HIV infected, Frazier says.

Implementation

In response to these observations, the Undergraduate Council a year ago passed a resolution, written by Kasper, calling for the implementation of anonymous HIV testing at UHS.

The resolution sparked a meeting last February between UHS personnel and representatives from AEO and PCC. The task force created during that meeting issued a report on May 21 recommending that "...UHS establish and provide anonymous HIV testing and counseling services. ..."

After deciding to implement that recommendation, UHS administrators turned the report over to an implementation team. In order to ensure students' anonymity, the team "really had to bypass most of our systems," says Michael, a member of the task force.

Everything about the anonymous testing procedure must be standardized. "The only difference between anonymous and confidential testing is on the medical record, not in the quality of care or information available," Frazier says.

Students must call for an anonymous testing appointment during regular business hours, like any other appointment scheduled at UHS. But no identifying information is asked.

The student schedules two appointments, one 45-minute session for pre-counseling and to take the blood sample, and one 15-minute post-test counseling session scheduled for two weeks later.

When a student arrives at the fifth floor testing site, the counselor, a specialist from Cambridge City Hospital, takes him to a private room where she conducts the pre-test counseling. She conducts a standard questionnaire of risk assessment, asking questions like: Why do you want to be tested for HIV? Have you ever used intravenous drugs? Have you ever had anal sex?

The student receives a bar code, which is his only form of identification. He must bring it back to get the test results.

In the post-test appointment, the student talks to the same counselor. If a student feels he is not ready to know the test results he may choose to return later. When the student decides to see the results, the counselor shows them to him with no previous knowledge of their status; they see the results together for the first time.

Students are assessed a $10 fee, which can be waived for those who are unable to pay.

The fee is the "last point of contention," according to Marco B. Simons '97, director for Social Responsibility for the Undergraduate Council.

Michael insists the issue is "not on the table with the task force." However, other members of the task force continue to express their conviction that the testing should be free.

The fee is not meant to defray the total cost of the program to UHS, which the task force report estimated to be $32,004 annually.

UHS administrators decided to absorb the cost, but to impose the fee in the interest of cost effectiveness. Acting on models provided by other universities offering anonymous HIV testing, such as the University of California at San Diego, UHS imposed a fee to maintain a low "Did Not Keep Appointment" rate, according to Michael.

Other members of the task force said they support the fee because they hope students will make an investment in the process and not treat the program frivolously.

The Undergraduate Council passed a bill this fall allocating $1,000 to cover the costs of the first 100 students to be tested, according to Simons.

But Frazier believes "HIV is more serious than a raffle," adding that the council's allocation would be more useful if spent on a needs basis, to cover those students who need to waive the fee.

Still, Simons is adamant in his position for free testing. "In my opinion, we should make it as easy as possible for any student to get an HIV test," he says.

He says that the current nature of HIV services at UHS -- in which confidential testing is free and anonymous testing requires a fee -- creates the perception that UHS is essentially charging for anonymity.

Confronting Discrimination

For some, the advantages of anonymous HIV testing have proven invaluable in the effort to combat HIV- and AIDS-related discrimination on a broader scale.

In 1985, when general HIV testing was first licensed in the United States, AIDS was largely considered a homosexual disease. Although the advent of testing services represented a significant step for those at risk, it also immediately raised issues of confidentiality, according to Mann, who worked at the World Health Organization in the mid-1980s.

HIV-infected people were kicked out of their houses and jobs, they were denied the ability to travel and to marry, Mann says.

"AIDS carries a stigma, so people would not go for testing if it's confidential," says Joshua D. Bloodworth '97, who organized the conference on AIDS among young blacks and Latinos being held today at Sever Hall and the Science Center.

From the perspective of the World Health Organization, "discrimination is undermining public health," Mann says.

In an effort to fight discrimination and encourage those at risk to be tested, Oregon became the first state to move its testing services from confidential to anonymous, Mann says.

But while anonymous testing works to make HIV testing more accessible by alleviating fears of discrimination, it does not actively reduce the incidence of HIV- and AIDS-related discrimination, he says.

"One thing we've learned is that most of it is not AIDS discrimination," Mann says. "People are using AIDS as an excuse toward underlying discrimination. For many people, the big force is not AIDS, it's homo-sexuality."

The Rev. Carol Johnson, a third-year student at the Divinity School, helps people prepare to deal with AIDS in ministry. She says she finds that dialogues about HIV- and AIDS-related discrimination "continually end up negotiating the stigma" among groups already struggling to overcome society's prejudices.

"Even as AIDS has evolved [and changed its concentration from specific demographic populations], the groups that it affects now have added to them the burden of AIDS-related discrimination," Mann says.

Still, HIV- and AIDS-related discrimination remains a problem in and of itself because of persisting fears about issues such as living with an HIV-infected person, Johnson says.

Despite students' knowledge about how HIV is transmitted, they may still feel discomfort when they imagine sharing bathroom space in the dorms with a person infected with HIV, says Johnson, who founded Harvard's annual GospelFest for AIDS, being held tomorrow in Memorial Church.

"I don't think it will go unstigmatized until there's a cure for it," Bloodworth says. "I don't think testing -- anonymous or confidential -- will change the stigma."

Mann says that in addition to improving treatments and education, "one of the [most important] factors of increased tolerance is knowing someone who is infected -- dealing with a person you know and not an abstraction," he says.

Founded in 1992, GospelFest devotes a portion of its program to inviting audience members and others in the room to share a moment of remembrance for loved ones who have died of AIDS by calling out their first names.

Johnson says that the first year, an audience of several hundred took five minutes to call out the names. The second year, the audience spent 15 minutes calling out names. And last year, the audience called out names for 25 minutes.

As evidenced by the increasing number of people remembered at GospelFest, the impact of AIDS and HIV is increasing in the Harvard community.

According to Frazier, this impact must be measured not only by the number of students infected with HIV, but also by those affected by HIV. While one infection for every 500 students seems a small figure, Frazier estimates that for each person infected with HIV, there are two or three others who are affected.

Harvard AIDS activists express concern about the impact of the rate of infection among people under age 22.

"We are losing people in their early productive and reproductive years," Johnson says. "We have to factor that loss into our vision of the 21st century, and it is a cost factor that becomes weighty for society as a whole."

Kasper says this total societal cost "adds to the significance of HIV testing in a young community like Harvard."

AIDS & HIV FACTS SHEET

One in four new HIV infections occurs in people under age 22.

AIDS is the leading cause of death of all Americans aged 25 to 44.

70 percent of those infected do not know their HIV status.

In the past year, on average, one American was newly diagnosed with AIDS every seven minutes.

An estimated 35,000 Mass, residents are infected with HIV and four to five more become infected each day.

While few women were infected with HIV a decade ago, they represented 39 percent of all new HIV infections in 1995.

In 1994, one in every three deaths among African-American men between 25 and 44 years old was due to HIV-related illness.

Source: AIDS Action Committee of Massachussets, Inc