.
H.I.V. Secrecy Is Proving Deadly
By HOWARD MARKEL (The New York Times, 25/11/2003)
With the progress in the medical treatment for H.I.V. over the past decade, unsafe sexual practices have risen and prevention efforts stalled.
And when it comes to being infected with H.I.V., the truth still remains shrouded in secrecy.
Today, many public health experts say that failure to disclose H.I.V. infection to partners, whether unintentionally or intentionally, is a significant but underreported factor in the continued spread of the virus in the United States.
The Centers for Disease Control and Prevention estimates that as many as 33 percent of the 900,000 Americans infected with the virus may not know it.
Dr. Robert Klitzman, a psychiatrist, and Dr. Ronald Bayer, an ethicist, both professors at Columbia, have explored the prevailing range of views and practices concerning H.I.V. disclosure in a newly published book, ''Mortal Secrets: Truth and Lies in the Age of AIDS.''
Using oral history interviews, the book explores the sexual practices of 49 men and 28 women in New York City. Sixty of the subjects are H.I.V. positive and there is diverse representation of gay men, lesbians, heterosexuals, Asians, Latinos, whites and blacks.
Dr. Klitzman said one of the most disturbing findings was that about a third of the gay men interviewed ''admitted that, at some point, they lied about their status, but it is probably a higher number.''
''I was horrified by some of the things people told me,'' Dr. Klitzman continued, ''and at the end of each interview we spoke to the subjects about safer sex and the importance of disclosure. But it led us to think about the importance of a code of sexual ethics.''
Although the interviews occurred from 1993 to 1996, before the advent of highly active antiretroviral therapy, experts say they believe that little has changed.
Sharon Boyd of the Michigan Department of Community Health said her current research suggested that perhaps as few as 20 percent of infected people living in Detroit had told their partners their H.I.V. status. ''Many fear that they won't have sexual partners if they do tell,'' she said. ''Many change partners quite often and are having unprotected sex.''
In real life situations, of course, the practice of sexual ethics is complicated by many factors.
Dr. Bayer said, ''People struggle with moral choices all of the time.''
''Many of the people we interviewed said that it mattered a great deal if they thought they might be harmed or rejected because of disclosure or if they felt the world was hostile or hospitable to being H.I.V. positive,'' he added. ''Fear and terror often shaped their decisions.''
A few case studies from the Klitzman-Bayer research reveal a complex web of secrets, lies and sex. The study's participants are identified only by pseudonyms.
Ginger says she routinely discloses her status to partners, but admits that even thinking about these discussions provokes anxiety.
''Nights have gone by where I've been on a date and 'I'm going to tell him tonight,' and then I didn't tell him. But I just automatically know about myself that if I were to proceed to have sexual intimacy with him and didn't tell them, I would feel horrible for the rest of my life, whereas rejection wouldn't.''
Craig, who is gay, felt that knowing a partner's status was unimportant as long as he practiced safe sex. ''We don't exactly say it,'' he explained. ''It's not really a say. It's a do: a condom is out on the table. You don't really discuss. Things just flow.''
Another subject, Patrick, hid his bisexuality and H.I.V. infection from his girlfriend for two years. ''I finally started to come to the conclusion that I'm going to lie to her,'' he said. ''I'm going to tell her I just found out. I think it was going to kill me, holding it in.'' When Patrick did tell her, he was astounded to learn that her greatest fear was that his infection would prevent them from getting married. Although she has tested negative four times, Patrick said he still worried.
Matters become even more difficult when trying to tell past sexual partners. As Nancy, 32, related in the book: ''People move, especially in their 20's. I was going to college; they're going to college; phone numbers and things move.''
She added: ''It's not always easy to talk to an old lover, because why did you break up? I mean, there are problems there.''
Mark Barnes, a lawyer and former associate commissioner of the New York City health department in the early 90's, recalled being shouted down in meetings when he urged people with H.I.V. to disclose their status. ''It's been woefully lacking in our prevention efforts, although there has been a new push by the C.D.C. and local health departments to encourage people to disclose,'' Mr. Barnes said.
In the past few years, local health departments' partner notification programs have proved to be effective, some experts say.
''If someone from the health department comes to your door and tells you that a person you had sex or shared needles with is H.I.V. positive, it sends a potent message,'' said Eve Mokotoff, chief AIDS epidemiologist for Michigan.
Disclosure can also be connected to the social acceptance of being H.I.V. positive in a given place and time. In 2000, Gugu Dhlamini, a South African woman, was stoned to death by her townspeople after publicly disclosing that she had H.I.V., said Dr. Quarraisha Abdool Karim, head of an AIDS research program involving South African women.
Over five million people in South Africa are infected with H.I.V. but less than 10 percent are aware of their status. With meager access to medical intervention and real risks in going public, South Africans ''have little incentive to even take an H.I.V. test,'' Dr. Karim said.
In Brazil, however, there appears to be a much greater openness about sexuality and H.I.V., encouraged in part by governmental efforts to sponsor early treatment and prevention campaigns, said Jennifer Kates, director of H.I.V. policy for the Henry J. Kaiser Family Foundation. ''Brazil is a real success story in both prevention and treatment of H.I.V.,'' Ms. Kates said.
In the United States, many public health experts and legal scholars believe that individual counseling and educational campaigns encouraging disclosure are more effective than punitive laws in preventing H.I.V. transmission. Thirty-five states have laws carrying criminal penalties for failing to disclose H.I.V. status to a sex partner.
What these laws often do not distinguish, said Prof. Lawrence O. Gostin, a professor of public health law at Georgetown University, is whether the infected person used a condom or actually intended to cause harm.
Such laws may also provide an incentive not to be tested, he said.
Public policies aimed at reining in sexually transmitted diseases are frequently foiled by human behavior, say Dr. Klitzman and Dr. Bayer, the authors of the new book. Still, they add, disclosure is essential in the containment of AIDS.
''To say everyone should disclose all the time is difficult, since some people may be rejected, kicked out of their homes, beaten up or worse as a result of it,'' Dr. Klitzman said. ''So we health professionals need to encourage those individuals who choose not to disclose to consider carefully all of the consequences of their decisions.''
By HOWARD MARKEL (The New York Times, 25/11/2003)
With the progress in the medical treatment for H.I.V. over the past decade, unsafe sexual practices have risen and prevention efforts stalled.
And when it comes to being infected with H.I.V., the truth still remains shrouded in secrecy.
Today, many public health experts say that failure to disclose H.I.V. infection to partners, whether unintentionally or intentionally, is a significant but underreported factor in the continued spread of the virus in the United States.
The Centers for Disease Control and Prevention estimates that as many as 33 percent of the 900,000 Americans infected with the virus may not know it.
Dr. Robert Klitzman, a psychiatrist, and Dr. Ronald Bayer, an ethicist, both professors at Columbia, have explored the prevailing range of views and practices concerning H.I.V. disclosure in a newly published book, ''Mortal Secrets: Truth and Lies in the Age of AIDS.''
Using oral history interviews, the book explores the sexual practices of 49 men and 28 women in New York City. Sixty of the subjects are H.I.V. positive and there is diverse representation of gay men, lesbians, heterosexuals, Asians, Latinos, whites and blacks.
Dr. Klitzman said one of the most disturbing findings was that about a third of the gay men interviewed ''admitted that, at some point, they lied about their status, but it is probably a higher number.''
''I was horrified by some of the things people told me,'' Dr. Klitzman continued, ''and at the end of each interview we spoke to the subjects about safer sex and the importance of disclosure. But it led us to think about the importance of a code of sexual ethics.''
Although the interviews occurred from 1993 to 1996, before the advent of highly active antiretroviral therapy, experts say they believe that little has changed.
Sharon Boyd of the Michigan Department of Community Health said her current research suggested that perhaps as few as 20 percent of infected people living in Detroit had told their partners their H.I.V. status. ''Many fear that they won't have sexual partners if they do tell,'' she said. ''Many change partners quite often and are having unprotected sex.''
In real life situations, of course, the practice of sexual ethics is complicated by many factors.
Dr. Bayer said, ''People struggle with moral choices all of the time.''
''Many of the people we interviewed said that it mattered a great deal if they thought they might be harmed or rejected because of disclosure or if they felt the world was hostile or hospitable to being H.I.V. positive,'' he added. ''Fear and terror often shaped their decisions.''
A few case studies from the Klitzman-Bayer research reveal a complex web of secrets, lies and sex. The study's participants are identified only by pseudonyms.
Ginger says she routinely discloses her status to partners, but admits that even thinking about these discussions provokes anxiety.
''Nights have gone by where I've been on a date and 'I'm going to tell him tonight,' and then I didn't tell him. But I just automatically know about myself that if I were to proceed to have sexual intimacy with him and didn't tell them, I would feel horrible for the rest of my life, whereas rejection wouldn't.''
Craig, who is gay, felt that knowing a partner's status was unimportant as long as he practiced safe sex. ''We don't exactly say it,'' he explained. ''It's not really a say. It's a do: a condom is out on the table. You don't really discuss. Things just flow.''
Another subject, Patrick, hid his bisexuality and H.I.V. infection from his girlfriend for two years. ''I finally started to come to the conclusion that I'm going to lie to her,'' he said. ''I'm going to tell her I just found out. I think it was going to kill me, holding it in.'' When Patrick did tell her, he was astounded to learn that her greatest fear was that his infection would prevent them from getting married. Although she has tested negative four times, Patrick said he still worried.
Matters become even more difficult when trying to tell past sexual partners. As Nancy, 32, related in the book: ''People move, especially in their 20's. I was going to college; they're going to college; phone numbers and things move.''
She added: ''It's not always easy to talk to an old lover, because why did you break up? I mean, there are problems there.''
Mark Barnes, a lawyer and former associate commissioner of the New York City health department in the early 90's, recalled being shouted down in meetings when he urged people with H.I.V. to disclose their status. ''It's been woefully lacking in our prevention efforts, although there has been a new push by the C.D.C. and local health departments to encourage people to disclose,'' Mr. Barnes said.
In the past few years, local health departments' partner notification programs have proved to be effective, some experts say.
''If someone from the health department comes to your door and tells you that a person you had sex or shared needles with is H.I.V. positive, it sends a potent message,'' said Eve Mokotoff, chief AIDS epidemiologist for Michigan.
Disclosure can also be connected to the social acceptance of being H.I.V. positive in a given place and time. In 2000, Gugu Dhlamini, a South African woman, was stoned to death by her townspeople after publicly disclosing that she had H.I.V., said Dr. Quarraisha Abdool Karim, head of an AIDS research program involving South African women.
Over five million people in South Africa are infected with H.I.V. but less than 10 percent are aware of their status. With meager access to medical intervention and real risks in going public, South Africans ''have little incentive to even take an H.I.V. test,'' Dr. Karim said.
In Brazil, however, there appears to be a much greater openness about sexuality and H.I.V., encouraged in part by governmental efforts to sponsor early treatment and prevention campaigns, said Jennifer Kates, director of H.I.V. policy for the Henry J. Kaiser Family Foundation. ''Brazil is a real success story in both prevention and treatment of H.I.V.,'' Ms. Kates said.
In the United States, many public health experts and legal scholars believe that individual counseling and educational campaigns encouraging disclosure are more effective than punitive laws in preventing H.I.V. transmission. Thirty-five states have laws carrying criminal penalties for failing to disclose H.I.V. status to a sex partner.
What these laws often do not distinguish, said Prof. Lawrence O. Gostin, a professor of public health law at Georgetown University, is whether the infected person used a condom or actually intended to cause harm.
Such laws may also provide an incentive not to be tested, he said.
Public policies aimed at reining in sexually transmitted diseases are frequently foiled by human behavior, say Dr. Klitzman and Dr. Bayer, the authors of the new book. Still, they add, disclosure is essential in the containment of AIDS.
''To say everyone should disclose all the time is difficult, since some people may be rejected, kicked out of their homes, beaten up or worse as a result of it,'' Dr. Klitzman said. ''So we health professionals need to encourage those individuals who choose not to disclose to consider carefully all of the consequences of their decisions.''
2 σχόλια:
Eίναι ένα τεράστιο θέμα αυτό που θίγεις, από τη μία η ευθύνη που έχει ο κάθε οροθετικός απέναντι στους συντρόφους του και το δικαίωμά τους να γνωρίζουν και να μπορούν να επιλέξουν και από την άλλη ο ανθρωινος φόβος της περιθωριοποίησης και της απόρριψης. Μακάρι να γινόταν στην Ελλάδα μια αντίστοιχη έρευνα σχετικά με τον πως αποφασίζουν οι οροθετικοί σε ποιον θα το πουν και με ποιον τρόπο.
Στην ουσία πρόκειται για το κλασικό και τόσο γνωστό σε όλους μας πρόβλημα της ορατότητας, εδώ σε μια πιο ειδική και οξεία μορφή.
Το ηθικό δίλημμα για το αν «το λέω ή όχι», οι συνέπειες στην αυτοεκτίμηση του ατόμου, η ψυχολογία του να ζεις μ’ έναν συνεχή φόβο.
Και, βεβαίως, όσο δεν υπάρχει ορατότητα μπορούν όλοι να θεωρούν ότι το πρόβλημα είναι μικρό, μακριά, ότι δεν τους αφορά άμεσα ως άτομα ή ως κοινωνία.
Ενδιαφέρον έχει, επίσης, η στάση εκείνων των άνετων «προοδευτικών» τρίτων που δηλώνουν ότι δεν έχουν «κανένα πρόβλημα», αλλά απαιτούν για λόγους αρχών ειλικρίνεια, χωρίς όμως να είναι διατεθειμένοι να στηρίξουν τους οροθετικούς και ασθενείς απέναντι στις διακρίσεις, την απόρριψη και τη μισαλλοδοξία των άλλων.
Δημοσίευση σχολίου