Yes, Jews have AIDS

'Living with AIDS is somehow much harder than dying of AIDS. And there are still people today who are ashamed of having AIDS.

By VIVA SARAH PRESS
September 17, 2005 02:58

 
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Two years. That's the insurance policy Tel Aviv resident Orit Levy (not her real name) took out for a washing machine she recently purchased. While to most, this undertaking may sound trivial, for Levy it was a giant step. Levy is an Acquired Immune Deficiency Syndrome (AIDS) carrier. When she was diagnosed with the illness 15 years ago, she thought her days were numbered. "I was shell-shocked when told I was positive," recalls Levy, a teacher. "I thought I was handed a death sentence." Today, her close friends and colleagues know she's infected. But many Israelis still believe AIDS only affects risk groups such as homosexuals, drug users, Third World immigrants and prostitutes. From dentists who refuse to treat HIV patients to hospitals that single out AIDS patients with a bio-hazard sticker on their beds, the situation in Israel proves that AIDS is not only a physical disease but also a social one. "Unless I'm accepted by society as an equal, I am not disclosing my status. I have a right to live like any other person," says Levy, in an interview at her Tel Aviv apartment. "I have to live in this country, and unless I'm accepted fully, I don't feel as though anyone has the right to say I have to disclose my status. It's called the law of privacy." Jony Jerusalem (his web tag) is one of the most outspoken AIDS activists in the country. He has publicly documented his battle with the illness on Web sites, through Internet forums, and has lectured in schools. He protects his true identity because he knows his job and daily life would be in danger if his AIDS status was known. "In 2005, Israelis still see AIDS as leprous. I've chosen whom to tell and whom not to tell. Society isn't ready for AIDS carriers to be open," says Jerusalem, a clerk in the capital. "You can say you have cancer and people will pity you. But if you say you have AIDS, not only will people not accept you, but they'll discriminate against you. They see you as different, not as an equal." The first case of AIDS in Israel was diagnosed in 1980, and 25 years later, the mention of the virus is still an anathema. In Israel, AIDS has been relegated to a once-a-year issue. "We have a problem in Israel that there's only one day where we publish AIDS information and have a national campaign [December 1, World AIDS day]. And if there are other political events on that day, nobody will pay attention to the AIDS issue," says Dr. Dan Turner, director of the AIDS Center at Tel Aviv Sourasky Medical Center. "When you talk to people in Canada or the US or Europe, AIDS has a much bigger impact. For example, if you go to the theater there, at the end of the evening, it's standard for theatergoers to be asked to fund an HIV organization. You won't see that in Israel. The society isn't ready." "APATHY IS LETHAL" is the slogan for the United Nations Program on AIDS. It's a motto that frightens those connected to the Israel AIDS community. Many point to the "cocktail" therapies as a reason for the growing lack of concern about the disease. The "cocktail" is usually a mixture of three medications that have helped change AIDS from being an automatic death sentence to a chronic disease. "Nothing much has changed for the simple reason that Israelis believe 'it won't happen to me.' The average person on the street says, 'I don't need to use a condom, it's not going to happen to me, and if I get it, there's medication,'" explains Levy, who has lost many friends to the disease. "Well, the cocktail is not vodka and Red Bull. The cocktail is a concoction of medications, each one more potent than the other. They all have side effects. They all have to be taken at certain times. You never can forget it. It's like living with bottles of antibiotics that never finish." Side effects of the cocktail include nerve damage, weakened bones, an accumulation of fat in the neck and abdomen and diabetes. Many people also develop dangerously high levels of cholesterol and other lipids in the blood. Today, the terms HIV and AIDS are used interchangeably. HIV (human immunodeficiency virus) is the virus that causes AIDS. AIDS is the disease characterized by a weakening of the immune system, and the development of certain infections. When the illness first came to light, HIV and AIDS carriers were separated by how long they had to live. As soon as a patient was diagnosed by doctors as having AIDS, he had an average of two years to live, explains Turner. Today, medical treatments prolong the lives of HIV/AIDS carriers. "People think HIV is safer than it is," says Turner. "People in Israel are not aware enough about the dangers of HIV. When you talk to people, many of them tell you, 'I was not afraid because I know there's treatment now for HIV.' While before, people were really afraid, now when I give a positive answer, they don't take it so hard because they think there's a treatment. And that's a big problem." Global statistics for HIV/AIDS are ominous: More than 40 million people currently live with the virus. According to UN statistics, last year another five million people became HIV-infected. Anywhere between 4,300 and 20,000 people in Israel are infected with the HIV virus and/or AIDS. The Health Ministry puts the official number of AIDS sufferers at 4,300. "All HIV testing that's positive is confirmed at Tel Hashomer AIDS Center. We have to trust these results," says Turner, who performs 6,000 AIDS tests a month. "The problem is that there's a belief that if you have 4,000 people who are diagnosed as HIV positive in Israel, you might consider maybe another 4,000 aren't diagnosed yet. It's very difficult to come to conclusions." But Levy thinks these numbers are too low. "The only way you're going to get accurate figures from any country is if you mandatory test a whole population. The other way you're going to get estimated figures, which are probably correct, is if you have anonymous testing and voluntary testing of a population," she explains. "If there's anonymous testing, everybody feels free to get tested at any time. In most Western countries, half the population regularly gets tested so the figures are multiplied by two for an estimate." There is no government-run anonymous AIDS testing (see box) in Israel. The Israel AIDS Task Force offers anonymous tests, but they cost up to NIS 100. Health Ministry-approved clinics and health funds offer confidential tests for free. However, one must hand over his or her ID number when taking a test. "While nobody can see that someone did an HIV test, I'm sure some people are afraid to come because they think the system is not secure enough," says Turner, who is in favor of anonymous testing. "Some 80 percent of the population have never been tested and will never be tested because they're terrified [of giving their ID number]," says Levy. "So, if you have 80% of a population that have never been tested, you must multiply the number of those tested by five." Levy says the number of HIV carriers in Israel is likely near 20,000. Meanwhile, according to the Israel AIDS Task Force, the United Nations AIDS statistics for Israel stand at 12,000. Dr. Gideon Hirsch, chairman of the task force, charges that the Ministry of Health "releases data in an obscure way so that it's difficult to know if AIDS is on rise." Jony Jerusalem says the Health Ministry's official statistics are correct. By the same token, he says, "There is no doubt there are thousands of other Israelis who don't know they're HIV positive and for sure have the virus." "It's difficult to say whether AIDS is on the rise, but one thing for sure is that the disease is not on the decline. In Israel, in the last years we've discovered between 300 and 400 new HIV cases every year which means an average of one patient a day," says Turner, who has been treating AIDS patients since 1991. "However, proper conclusions cannot be made until the end of the year because sometimes a lot of people will come in a month and then almost no one will come the month after. Therefore, it's difficult to set statistics. What is certain is that AIDS in Israel is not decreasing." FOR THE last few weeks, every week, Turner has had to say "positive" to at least three people who came for an AIDS test at Tel Aviv Sourasky Medical Center. It is deplorable that in a country known for its brain power, be it in scientific or technological achievements, AIDS cases in Israel are not decreasing. Some say the Ministry of Health should be held responsible for its deficient funding and lack of awareness campaigns, others blame the Education Ministry for its lax policy of teaching about the disease in the schools (see box), and still others say it is Israelis themselves who deserve reproaching. Unofficially, the Ministry of Health (figures could not be authoritatively corroborated) allocates NIS 120-140 million towards AIDS care and prevention. That sum includes the amount of money paid to health funds to cover the costs of AIDS carriers' medications. Hirsch notes that in most countries in the West, as well as in Thailand and Mexico, one third of the national expenditure on HIV and AIDS is used towards prevention. "In Israel, it's a terrifying ratio of less than one percent of the HIV/AIDS budget," says Hirsch. "It costs $1 million for a lifetime treatment of an AIDS carrier. Therefore, every person educated about the illness and thus rescued from infection is $1 million saved." Turner and Levy note that medications for HIV sufferers come to NIS 4,500-7,000 per month. The health funds foot this bill. The Ministry of Health annually finances a national awareness day to coincide with World AIDS Day on December 1. Health officials admit that the incidence of AIDS is on the rise among heterosexuals, especially teenagers. Turner says Israeli youth play a kind of "AIDS roulette" in that they regularly have sex without using a condom. "The figures point to a dangerous trend," he says. Shosh Zimmerman, acting head of the sexual education department at the Education Ministry, admits that for the past few years the ministry has been laidback about promoting AIDS education. "We see there's a need to update the way AIDS is being taught in schools and make it more relevant," she says, noting the ministry is currently putting together a new lesson plan for teachers. "We know there's a huge difference between what students know and what they do. A lot of youth know it's right to use a condom but when it comes to it, they won't insist on using one. We're working on an education format that will narrow this gap." Zimmerman notes that this year, the ministry will require all schools to earmark a week around World AIDS Day in which to teach about the disease. The ministry is also devising a program of study on "respecting HIV carriers," Zimmerman added. "No Israeli student should be devoid of the right to learn about AIDS," says Hirsch of the Task Force. "The infected are getting younger and younger. We [the Task Force] have excellent prevention and education workshops that should be compulsory in the school curriculum." Zimmerman points out that the Ministry of Education publishes a letter for ninth to 12th grade students telling them about their right to an AIDS test, even without their parents' knowledge. These letters are sent to school principals with a missive explaining how best to hand out the letters. However, there is no penalty for schools that do not deliver these letters. FIVE YEARS ago, the Israeli view of AIDS could have shifted dramatically. Many believe the late singer Ofra Haza could have been Israel's Magic Johnson. But while the basketball legend pushed AIDS awareness to the forefront of American consciousness, Haza pushed it further into the closet. Johnson took it upon himself to clear up misconceptions surrounding HIV and AIDS, and most importantly, to show it's not "a gay person's disease." Haza did the opposite. Haza's "untimely death" was never officially attributed to AIDS, but there's little doubt this is what killed her. Had she admitted publicly that she was suffering from HIV, the stigma of the disease could have changed. "The Israel AIDS Task Force as well as doctors try very hard to change the Israeli attitude to AIDS, but it's very difficult," says Turner. "I think that the Israeli population accepts she died of AIDS but they look at her as a victim. She was in a situation where Israelis say she died of shame. She was in the closet until the day she died. And therefore Israelis look at her pityingly," explains Levy. When Levy told her children that she was a carrier, they were stunned. Over the years, they've learned tolerance. "My goal in life is that they accept me for who I am," she says. "I am foremost a woman, secondly I'm a mother, thirdly I'm both of those living with HIV. As much as I try and accept them, they have to learn to accept me. I do not have to ram it down their throats every day, but it's something they have to live with, just as it's something I have to live with. "If Haza would have said 'I'm a woman, a singer, someone talented, I'm like anybody else and it happened to me,' it would have hit the Israeli population," says Levy. "The whole thing of her dying of shame was very useful to the Israeli population. She became something they cannot identify with, she was a victim, and she was a one-off. It's the ostrich approach burying heads in the sand. It is easy to say there was only one person, it was Ofra Haza, and there are no other women in this situation." Levy, one of the co-founders of the Israel AIDS Task Force, says Haza was a missed opportunity. "She could have done miraculous things in this country. She could have helped the women in the country face it rather than deny it. Unless there's going to be another celebrity like her, Israelis are going to carry on putting their heads in the sand. With Israeli society, unless it happened to you or someone close to you, it isn't your problem." AT THE end of July, the Israel AIDS Task Force initiated a modest campaign aimed at the local homosexual community. It featured a controversial advertisement with the torsos of two men and the slogan, "Every week, three gay men are infected with AIDS." The campaign didn't make a huge splash in the mainstream media. However, Y-Net news did allocate a spot in its health section to the debut of the ads. The article was just a few paragraphs long, but more than 220 people posted responses. The headline of the article insinuated that AIDS was only on the rise in the gay community. Tying the ad campaign, and by proxy the report, to the gay community irked all readers. For some, it was so-called evidence that the gay community was to blame for the disease. "Strange that davka the gays, who are so involved in how they look, don't care enough about their lives to put on a condom. And not only that, but afterwards my tax money goes to paying for their medicines because of their irresponsibility," wrote a reader called 'one.' For others, the ad and report were blatant bigotry. "I don't know from where they acquired the figures of three gay men getting infected in a week, but even the Health Ministry agrees they're incorrect. There are no such statistics," says Jony Jerusalem, irate at the damage caused to the homosexual community. "This report says gays are responsible for AIDS. They unjustifiably put a huge stigma on the community. AIDS is not a gay disease." The report led with the gay nugget. A few sentences later, it revealed that homosexual men make up just one quarter of all AIDS carriers in Israel today. A number of readers took offense at the typecasting. "What a homophobic headline, why not write 75% of new AIDS carriers are straight?" questioned one reader. "Instead of highlighting the fact that 25% of new instances are gay, and making it seem as if AIDS is a gay disease, take note that three-quarters of new cases are heterosexuals." "Get real, why not be a little more anti-homosexual?" wrote another reader. "What about addressing the 75% of AIDS carriers who are not gay?" The Task Force said its ad was not meant to fuel the gay stereotype but rather to warn the community of recent global trends. The Task Force runs campaigns throughout the year, aimed both at specific groups as well as at the general public. "We thought there's an urgency to bring back the crisis of gay AIDS," explains Hirsch of the Task Force's decision to launch its summer campaign to the gay community. "We thought the most rapid increase in the number of new infections happens in the gay community. There was an over 100% rise in infections between the years 2003 and 2004. Doctors from AIDS clinics reported unofficially that they were seeing large numbers of young gay men come for testing." Jony Jerusalem admits that "there is some irresponsibility" but that the report and advertisement made it seem "like everyone who is gay is reckless, and that only gays get AIDS. It's easy to attack the gay community and so that's what happens." "AIDS in Israel has to be treated like a gay disease, otherwise the straight community has to do something about it," says Levy sarcastically. "They're going to have to start using condoms and behave rationally, and they're not. It's much easier to say 'it's not us, it's them.' Nothing much changed for the simple reason that Israelis believe 'it won't happen to me.' It's much easier to say, it's still only the risk groups." WHEN LEVY and Jony Jerusalem were first diagnosed with HIV, they were mortified. For Levy it was 1990. Divorced from her husband of 20 years, she had an 18-month relationship with a man she met through work. He infected her with HIV, the precursor to AIDS. "The way I felt at the time was a punishment from God. A total death sentence. People who had AIDS died. You didn't live with HIV, you died with AIDS in 1990. [I felt] a shame. I couldn't disclose to anyone that I had AIDS. It was something that nobody spoke about. It was only the three risk groups prostitutes, drug users and homosexuals who had AIDS in 1990." Levy does not fall into any of the risk groups. She is a heterosexual mother of three. She does not look ill. She is sprightly and agile. And save for the cocktail of medications she must take daily, she leads a normal life. It took Levy 15 years to see a future beyond one day. "I'm planning ahead for the first time since 1990. Years ago, three months ahead was a long time. I want to be here, I want to enjoy." WHEN JONI Jerusalem found out he was an AIDS carrier three and a half years ago, he didn't want to share his news with anyone else. Jerusalem had been sick for some time. He first had a skin ailment and then respiratory problems. "At first I wanted to die when I heard what it was," says Jerusalem, who was still closeted about his sexual preference when told he was an AIDS carrier. Today, he runs the israelpositive.com Web site and co-hosts an AIDS forum on Tapuz.co.il. "When I was infected I went to the Internet for information and understood only that I was on my way to dying," says the well built, stylishly dressed 42-year-old over coffee at a Jerusalem cafe. "It is important for me to offer others information about the disease and what it's like to live with it so they know dying is not the only option." And today there are a lot more people living with AIDS. "Today's it's termed a 'chronic' illness and not a 'terminal' one despite the fact that there's no cure," says Levy. "In 1990, you died of AIDS. You didn't have to think about it, you died of it. Today you have to live with it. And it's very difficult because you have to have family that accept you, you have to have a support system, you have to work, you may want a partner, you may even want kids. It's living with it. "Living with AIDS is somehow much harder than dying of AIDS." While in other countries, huge billboards carry AIDS awareness messages, Turner says that putting "a big picture of a condom or something like it in a bus station is a problem here because of religious sensitivities." He adds: "It's very difficult to talk about HIV in Israel. It's not only the government, but the interest of the media and the people. The issue doesn't interest Israelis or Jewish people. And that's the big problem."


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