They are mixed couples of a different type: one of them carries the HIV virus, the other is healthy. They take precautions and have healthy children, full and happy relationships and careers. The surprising, optimistic side of the disease we fear so much.
It's noon on a recent Friday. The public park is quiet. The water in the pond glitters in the sun. Children frolick, couples stroll, birds chirp. Little Romi romps on the grass as her parents, Amir and Noga - both 34, with careers in high tech - look on, smiling and proud. Nothing betrays the inner drama their small family has experienced.
"Eleven years ago I never thought the day would come when I would have a family," Amir reflects aloud. "At the age of 23 I discovered I was HIV positive. I didn't believe that any woman would be willing to live with me. It turns out I was wrong." His smile broadens.
There are an estimated 6,000 people in Israel who are HIV positive - meaning they carry the human immunodeficiency virus HIV, the agent of AIDS. In recent years, many have opted to enter into couple relationships, including parenthood, with non-carrier partners.
"In the past, carriers only had relationships with other carriers," says Miri Barbero-Elkayam, a social worker who heads the psycho-social unit of the Israel AIDS Task Force. "Encounters between them were organized by social workers who acted as occasional matchmakers, at events organized by the AIDS Task Force, at parties for young people who were HIV positive and via certain designated websites. At present, we are seeing more and more carriers looking for marital partners independently, and we are also seeing openness in non-carriers who are willing to enter into such relationships." When Amir (his name and the names of all carriers and family members mentioned here have been changed ) was diagnosed as HIV positive, he thought his life had all but come to an end.
"I was a good-looking popular young guy and lived a wild life," he explains. "After completing my army service, I went through a period of a lot of casual sex - all under the influence of alcohol. I was sure I would be a bachelor forever. My whole life was parties and nightclubs."
But all that abruptly changed at the age of 23, when "I developed a severe case of flu. It was weird ... My lymphatic nodes swelled. I did a biopsy and discovered that I was HIV positive."
How did you react to the news?
Amir: "I became a shadow of my former self. It was like a brutal fall from the top of the world to the bottom. I cracked up physically and mentally."
He told his parents about his situation and they urged him to drop everything and come back to live at home. "I cut off everything and said good-bye to everyone," he recalls, still shaken by the memory. "I told my girlfriend I was HIV positive, and to my surprise she wanted to stay with me. But I felt so bad about myself that I didn't want to 'punish' her by having her be with me. I went back to my parents' home, to the room I had as a boy, and became a loner. For three or four months I was completely wrapped up in myself. I cried a lot and I wallowed in self-pity."
Appalled by Amir's condition, his parents turned to the AIDS Task Force .
"I went there with the feeling that my life was over, and suddenly this woman, who looked wonderful, told me, 'I have been HIV positive for 17 years,'" Amir says of his experience. "And then I saw more and more people who said they were carriers but looked terrific, athletic. My outlook changed fast. It's not that life became rosy, but I understood immediately that there was a gap between life as a carrier and the stigmas and prejudices surrounding AIDS. Within half a year I enrolled at university. Where I used to be a clubber, I was now on solid ground."
Amir made his first efforts to find a partner via singles sites aimed at HIV positive people. "I met a woman I thought was cute, but it didn't develop into anything," he relates. "It was hard to find someone. I decided that I wasn't going to choose a partner on the basis of HIV. I went on with my regular life."
Weren't you wary of telling women about your condition?
"There was the fear of rejection, naturally, but if you let people get to know you first, rather than your 'HIV side,' and you are sure of yourself and genuine - there is no reason to be afraid. It's not that in the first minute I said, 'Nice to meet you, my name is Amir and I am HIV positive.' The one time I actually did that the girl really didn't know how to cope and refused to have a relationship. Afterward, I brought up the subject only when I was quite sure of the relationship and felt that the other side wanted and I also wanted to go on, and that it was not a casual sex thing."
Being HIV positive did not ruin any relationship, Amir says: "I had four girlfriends after discovering I was HIV positive. They all knew and all accepted it. There was even one case in which the condom tore during the act. We went to a doctor immediately and she received anti-infection treatment and had to take pills for 28 days. It was definitely not pleasant, but it did not end the relationship."
The secret revealed
"The rising number of mixed couples is further evidence of the normalization of life with the HIV virus," says Yonatan Karni, head of the AIDS Task Force, referring to couples in which one member is HIV positive. "If in the past the possibility of such relationships could be dismissed with the excuse that they had no future, we see today that it's definitely possible. Not so many years ago, when someone would announce that he was HIV positive, he would barely manage to see his date's back as she left. These days, young people are more open to the possibility of giving someone serious a chance, even after the HIV issue comes up."
What brought about the change?
Karni: "Important studies published in the past decade about the effectiveness and implications of medicinal treatment have brought hopeful tidings. Carriers who are treated can now expect to live almost as long as the general population. People who are HIV positive and follow a strict medicinal regimen lower the viral load [i.e., a measurement of the amount of active HIV in the blood of someone who is HIV positive, reflecting how active the disease is] to a level that is lower even than the threshold of what an examination can detect, and this significantly reduces the chance of infecting others. This is not a recommendation to forgo the use of condoms, but it is an all-clear signal to those who are afraid of being infected. And if there is a fear of infection the couple can go immediately to the ER and ask for preventive PEP (post-exposure prophylaxis ) treatment."
Still, Karni admits that the situation is far from rosy. "The public is still deeply ignorant and there will always be people who prefer not to deal with this," he notes. "On the other hand, just as most people will not turn their backs on the love of their life because she has diabetes or asthma, or is in remission from cancer - there are people who understand that the HIV case is no different. With reliable information about HIV, it occupies a very secondary place in the routine of a relationship."
For their part, Noga and Amir met 10 years ago and have been married for five. "For two-and-a-half years we were just friends," Noga says about the start of the relationship. "We talked a lot, and gradually he hinted that he had a problem in his blood and he occasionally went to the hospital. When he told me he was HIV positive I was ready for it from all the hints he had given me. I didn't run away. I can't tell you that it didn't scare me in the least, but I accepted it and entered into the relationship."
Weren't you concerned about being infected?
Noga: "The doctor who looked after Amir in the hospital and the nurse in the ward gave me comprehensive information and explained what to do if the suspicion of infection arose. I saw no reason for concern."
But couple still has a long road to travel before telling their friends and families. "It's especially hard to hide it from people who are dear to you, like my mother," Noga says. "She is very close to me, but I don't dare tell her. I don't think she would accept it and I am not about to take the risk. There is tremendous ignorance, and a powerful stigma is attached to the disease. It has negative connotations for people."
Their secret was, however, revealed one time. "One day I felt bad and Noga ordered an ambulance," Amir recounts. "A hysterical female paramedic arrived, accompanied by a medic and two 16-year-old volunteer girls who lived near my family, and she screamed, 'I want everyone to put on gloves, because our client has AIDS!' Within days the rumors spread."
Noga and Amir moved away. "That situation caused us irreversible damage," Noga says. "It happened a few years ago and we are still haunted by it."
Amir: "People I didn't even know had the gall to ask me if the rumor that I had AIDS was true."
To tell or not
Noga - who projects grace and calmness, and is sharp, sensitive and funny - says it's precisely the interaction with medical personnel that strengthens their resolve not to expose Amir's condition.
"When we go to the doctor we in effect immediately inform the whole system," she says. "But sometimes medical people are fixed in their views and are captives of prejudice. For example, four years ago we were concerned that I might have been infected, and I was referred to a doctor who specializes in AIDS to get preventive treatment. She was very contemptuous and gave me the feeling I was some prostitute who had been infected by a john."
Amir says that some dentists refused to accept him as a patient. "In the end I found a wonderful doctor and a month later I had another appointment with her. When I arrived there was a big fuss around her room. A team was putting plastic coverings on the ceiling, on the walls, on every instrument in the room. Everyone was wearing surgical outfits and surgical masks. The doctor apologized, saying: 'These are the instructions I received.'"
How much of an effect does the HIV issue have on your relationship?
Noga: "There are all kinds of limitations which a regular couple might not have. In contrast to married couples, we practice safe sex, and sometimes when he gets a cold and a slight fever, I take him to ER immediately because of sheer pressure. Everyone around me is amazed and they tell me, 'Why are you so uptight? Give him an aspirin and be done with it.'"
Don't you sometimes feel that it's all too complicated?
"I had one crisis, involving the fertility process. Everyone asked why we didn't have children and I made up stories. We knew about a technique called sperm washing [see box] by which a healthy child could be brought into the world, but it was only done abroad and was very costly - more than we could afford. But despite the crisis I went through at that time I never said the marriage was over."
For four years the couple waged a correspondence war with physicians, hospitals and the Health Ministry, with the aim of accelerating the process of fertility treatments for HIV-positive people.
"We knew that the intention was to carry out those treatments in Israel and that it was being delayed by administrative problems," Amir says. "We went from one doctor to another, paid thousands of shekels and almost gave up, but one day we came across an article about a method that allowed HIV positive people to have children, which had been successfully tried in Switzerland. The article said that a strict daily regimen of treatment reduced the viral load and the chance of infection. The non-carrying partner has to take an anti-infection medicine for three days before the sexual act and for three days afterward."
Did you consult with doctors?
"We informed the medical system that we were going ahead with it. They told us what we were doing was wrong, because from their point of view it constituted unsafe sex, but we knew there were other couples in the country that had done it without being infected and had healthy children. It hurt us that we had waited four years and had stumbled across the information. No one ever informed us about the technique."
Weren't you worried about possible infection?
Noga: "I took the risk knowingly. After I became pregnant I did a test that showed I was not HIV positive, and after that the whole pregnancy process was the same as with any woman whose partner is not a carrier."
Do you feel that there is discrimination against people who are HIV positive?
Amir: "We feel there is discrimination on the part of the authorities. If they treated carriers as equals, I believe that attitude would trickle down into the whole society. Insurance companies will not issue life insurance policies to people who are HIV positive, so I am forced to take out pension insurance - but what's worse is that we can't take a mortgage [which entails life insurance] and will have to rent for the rest of our lives. I have been HIV positive for 11 years and live a high-quality life. The average mortgage is paid back in 20 years. In other words, I could have paid back half the mortgage."
"I know a cancer patient who got a mortgage," Noga adds. "It's not pleasant to say this, but her chances of living are not high, whereas the life expectancy of people who are HIV positive is almost the same as that of the general population. There is no logic to this decision and it is not consistent with scientific developments or with the day-to-day life of carriers."
While we talk, Romi scampers about the room and flashes a winning smile every which way. "We are uncertain about whether to tell her," Noga says.
"I don't know," Amir says. "I take two pills a day and that's the end of it, I don't see any reason to tell."
A few minutes later, as his gaze locks with his daughter's, he adds, "If she asks, I believe I will tell her. I would find it hard to conceal it."
"Many people have the brutal images of terminally ill patients from the 1980s burned into their consciousness, but the reality of the HIV carriers has changed since then," Barbero-Elkayam, from the AIDS Task Force, says. "Cancer patients are viewed with sympathy and empathy, whereas people who are HIV positive fear social ostracism. The situation is that HIV is 'faceless' - and that only heightens the fear and perpetuates prejudice."
Barbero-Elkayam sees many of the mixed couples at the outset of their relationship. "They meet with me two or three times, which allows both sides to express apprehensions," she says. "The carriers are often afraid they will infect their partner, that the relationship will not be on an equal footing and that people will pity them and protect them - or, on the contrary, will not treat them as equals. I have to say that among couples who kept on with their relationship, the HIV issue plays a very small part."
Do you see a change in the younger generation of carriers?
"Yes. In the past decade the crisis involved in revealing an HIV positive condition has tended to pass very quickly. Young carriers are quicker to share their situation with their close milieu and there is greater boldness in coming out of the 'carrier ghetto' and initiating meetings with non-carriers."
According to Barbero-Elkayam, a revolution is still needed. "Men and women carriers have to come out of the HIV closet," she says. "In Berlin and San Francisco people who are HIV positive are open about it. That is fomenting a change of consciousness and the public is becoming more receptive. It's a chronic illness that can be lived with. The true sickness lies in a society that refuses to change its modes of thought. The 'real' infection is the ignorance or the stigma still associated with the condition of being HIV positive."
Koby, 40, a successful chef with a business of his own, is working on supper at home. His partner, Ilan, a musician of 36, is assisting like a full-fledged sous chef. Aromas waft through the kitchen and there is a domestic sort of atmosphere. Koby was 28 when he discovered he was HIV positive.
"I had a partner from abroad and didn't know he was a carrier," he says. "We practiced safe sex, apart from one evening when we weren't careful. Three weeks later, I got sick. I had pains in my eye sockets and felt nauseous and was terribly weak. I went to an internist and did blood tests, including an HIV test, and a month later the clinic called and asked me to come in."
What was your reaction?
Koby: "I cried. It was the most humiliating thing of my life. I cried in front of a doctor I didn't even know. There was no one with me at that moment. The internist got uptight - I think it was the first time she ever encountered this. She asked dumb questions, like how I got into this and where my mother was. I left and didn't know what to do.
"I had a feeling of failure. I am a careful person, a sort of nerd, even conservative. Not a 'good-time Joe.' When someone is ill with cancer or diabetes, people don't judge his way of life. But HIV is identified with drug addicts or with people who conduct a wild, dark sex life. That is not me. I am from a traditionalist-religious family, a very elitist home. As far as possible from all that."
Koby chose to tell his close circle, some other friends and employers that he is HIV positive.
"I am very genuine, that is part of who I am, so I just told them," he says. "Those who loved me loved me even more because of the honesty. I didn't lose any friends and people did not change their attitude toward me."
He told his parents three months after he learned about his condition: "When I told them I was not religious, that was hard. Afterward, to tell them I was gay was also not easy, and after you see how hard they took that, how do you tell them you are HIV positive?" he says. "I went to see them on a Friday and told them before Shabbat, and they simply lapsed into silence and fasted the whole Shabbat. My feeling was that I had to protect them, care for them, defend them. In time they softened and became used to it."
Koby devoted himself to his studies and built himself up economically and professionally. "I didn't want to immerse myself in the HIV mire, so I busied myself doing things, but it was there all the time in the background. All kinds of questions came up: whether to start taking daily medication, whether it would change my life and in what way."
"I had a few one-night stands, with anyone who was just willing to touch me. There were volunteers in the AIDS Task Force who helped introduce carriers to one another, but it was strained. An illness can't act as a connection between people. A relationship develops from attraction, courting, friendship and mutual interests, not from HIV. It was like a 'blood wedding.' I had a few experiences with carriers, but it didn't work."
'He's more vulnerable'
Koby and his partner have been together for 10 years. "When I met Koby I was extremely lonely, and I didn't want to forgo him because of something that could be resolved with a condom," Ilan says. "That is what I thought about AIDS then. I was 26 and head over heels in love, and the relationship has gone on and on and become perfectly normal and totally banal."
At first, Ilan hid the fact that he was gay and certainly also the fact that Koby was HIV positive: "As time passed, and I became more open with everyone about my sexual inclination, the AIDS issue started to come up and I gradually understood that it was more constraining than I had thought. I felt that I had come out of the closet of homosexuality and entered a new closet - the HIV positive closet. There was a period in which my frustration burst out. I wanted to go to Sinai, but we couldn't go, because one of the old medicines was liable to melt in the sun. It was the same going abroad; you had to be in places where there was a refrigerator for the medicines. It suddenly hit home that despite everything, there are limitations. And there was one time when we went to a hospital because he became dehydrated, and I understood that Koby's body is more sensitive than I imagined, that he is more vulnerable in terms of health and that life is more fragile than I had thought."
"We are very careful about having safe sex," Ilan explains. "When there is sex at all," Koby protests. "Still, we have been together 10 years," Ilan laughs, but then turns serious and adds, "Never in all my 36 years of life have I had unsafe sex. I don't even know what I am missing," he smiles. "And it has never occurred to me to break the connection because of that."
Koby listens and makes it clear that for him, too, as a carrier, this relationship is not something self-evident: "In the first years I found the relationship very difficult. I thought it was because of my inferior feelings as a carrier, because I was coming from a lower place than him. I don't think or feel that way anymore, but a carrier has a lot of problems being with a healthy partner, such as the fear of infecting him. All kinds of thoughts arise: What if something happens to him? What if something happens to me? Can anyone who is not HIV positive even understand what I am going through?"
Does it create a disparity in the relationship?
Koby: "When you are told that you are HIV positive - and even more so 12 years ago - it hits you hard. You have to reshape and restabilize yourself. That takes work. You understand that people can now term you 'sick,' just as when you were a boy you were branded a 'faggot.' But if you work with yourself properly, you can steel yourself and become stronger. And suddenly you are with someone who is physically healthy, but weaker than you in terms of courage and coping.
"Sometimes, during an argument, thoughts run through your mind, such as why argue at all, let's just enjoy life ... I have a kind of knife hovering over my head, which is maybe not about to lop off my head but exists and is whispering: Live. Live. Live."
Ilan did not tell his family or friends about the HIV issue. Koby is more open. "My character, the person I am, also entails being a carrier," he explains. "But I think that if Ilan's family, with whom we have very good relations, were to know, it would hurt the ties."
Ilan believes that the social stereotyping and ignorance have not faded over the years. "When I talk to people about AIDS I get the feeling that 10 years haven't passed," he says. "I hear prejudice and negative views even from people whom I thought were enlightened. HIV may not be a derogatory term, but it is still something to be ashamed of. Maybe Koby felt it less when he came out of the closet, because he is the perfect sabra and the owner of a successful business. But if his profile had been different, the response would also have been different."
"I enjoy life," Koby asserts. "If there is a specific problem, you solve it. I go to medical conferences and hear about innovations and scientific progress. Carriers lead a good life today. They don't go through radiation treatment or chemotherapy, and they don't walk around with a hypodermic, like diabetics. I swallow six pills in the evening and one in the morning and have a check-up every three months - and that's it. The real difficulty is coping with the surrounding society. That's where the healing is needed."
Ilan shakes his head in despair: "If I were to tell him tomorrow that there is a medicine or an injection that eradicates the virus, he wouldn't take it."
Koby laughs. "From that point of view, maybe there is a reason for suicide."
Ilan: "He would take it because I would make him take it."
Koby: "I wouldn't forgo being HIV positive. It has strengthened me. As a carrier I have come a long way and learned to know myself and have even achieved some sort of salvation and a life of freedom."
Ilan interjects, grumbling, "Maybe you could have achieved just as much without that? He and other carriers have a tendency to turn HIV into an asset. It is not an asset."
"Wait until you have it," Koby says and they both break out in gales of laughter.
Hug of solidarity
Four and a half years ago, Nadav, a 38-year-old accountant, found out he was HIV positive.
"The first thing that entered my head was how I would have children," he says. "When I was informed that I could be a father I was overjoyed, but at the same time concerned about how I would find a woman who would agree to have a child with me."
Ayelet, a kindergarten teacher of 39, listens, smiles and rubs her pregnant belly. We met when she was in the middle of her eighth month, and two weeks ago they had a daughter. She is straight, he is gay and they banded together to have a child. Until their paths crossed, Nadav had long sought a partner for parenthood but in vain. At the same time, Ayelet went through a process of disillusionment. "I understood that if I wanted a family I would have to transform the ideal of the traditional family into one of a modern family," she smiles.
She contacted Nadav through a parenthood forum on the Internet. "I called at the end of July 2008, and after four meetings I knew this was it. One of the things that sparked the chemistry was that we were in the same place - we were both ripe for this."
In the fourth meeting Nadav revealed he was HIV positive. "I was ready for any reaction," he recalls. "That she would hug me out of solidarity and leave, would hug me and then not take my calls. The same way the other women had behaved. But no. Things continued. And without any connection to the mutual desire to be parents, we became friends."
Ayelet: "The way he told the story made it possible for me to cope. He gave me information, data, facts, referred me to professionals. I was not frightened in the least. My thoughts were focused on the person I wanted as the father of my children and the kind of communication I had with him."
Ayelet then shared the news with her family; the responses were supportive and open. "The family felt they could trust me, and I think that is what made it possible for us to continue."
Nadav did the same. Two-and-a-half years after learning he was HIV positive, he told his family and shared with them his aspiration to become a father. "That was a pill that sweetened the bitterness over the HIV story," he says.
At the time, Israel did not have fertility treatments involving sperm washing for HIV carriers. The couple traveled to a medical center in Europe. But repeated efforts to become pregnant failed, and it turned out that Ayelet had a fertility problem. "We decided to achieve pregnancy by the 'natural method,'" they admit, by means of home insemination, which involves the injection of sperm, while taking medication. But this too failed.
In April 2010, Rambam Medical Center in Haifa opened the first unit in Israel that offers fertility treatment for women and for couples carrying the HIV virus, including the sperm-washing method. Ayelet and Nadav were first in line.
"In the hospital it turned out that an egg donation was needed," Nadav recalls. "My sperm underwent 'washing' and was flown to Ukraine, where it was used to fertilize a donated egg. If we want more children later, we have that possibility," he says, summing up the expensive but ultimately worthwhile process the two went through.
"We are happy and thrilled that people who are HIV positive can now have a healthy family and lead a normal life," Nadav says. "Married straight couples would have long since divorced," they laugh. "After going through this saga we know that the bond between us is exceptionally strong."
Will their little girl know about the HIV? "We have a few things to talk to her about," Ayelet says, and Nadav adds, "As far as I am concerned, when she is able to understand it, then yes."
Insensitivity and rejection
In today's Israel, people who live with the HIV virus still suffer from the institutionalized violation of many basic rights. Insurance companies refuse to issue policies that require medical certification to carriers. The types of insurance involved include life insurance, insurance for loss of work capacity and nursing-home insurance. Other countries have introduced an up-to-date policy, however: In Holland an association of insurers has shown that, irrespective of the moral side, it is even profitable to insure HIV carriers.
In Israel, where taking out a life insurance policy is a condition for getting a bank loan to buy a home, people who live with HIV cannot get a mortgage. In 2008, a concerted appeal was made to the CEOs of the banks by the Israel AIDS Task Force, MK Shelly Yachimovich (Labor ) and Itai Pinkas, a former member of the Tel Aviv municipal council, with the aim of creating a special mechanism that is not dependent on the insurance companies. However, the banks refused to forgo the demand for a life insurance policy. Some replied that they would weigh the option of granting special mortgages to HIV carriers with high financial collateral.
People who are HIV positive also sometimes face discrimination when it comes to medical treatment. In institutions that do not follow the procedures of the Health Ministry, such people discover that it is difficult to make an appointment with a dentist or that the service provider puts them low down on the list of its priorities. Such rejection is not only offensive but is liable to endanger the health of the carriers - such as those on the waiting list for an important operation. At the same time, many hospital departments continue to mark HIV carriers by means of a blatant symbol on the medical chart.
Insensitivity to classified medical information, which is protected under the law, also exists at some places of work. Many employers demand that job applicants or employees waive medical secrecy and produce a negative result for an HIV test, even though it is not relevant to the job description. Many carriers who suffer this form of discrimination prefer not to complain, even if it means giving up basic rights.
Coming out in the wash
In the first years after the outbreak of the AIDS epidemic, the medical establishment unequivocally recommended to HIV carriers not to have children. A turning point came in the mid-1990s, with the introduction of antiretroviral treatment (the "cocktail" ). The life expectancy of people who are HIV positive and under medical treatment is now almost identical to that of the rest of the population; carriers can have healthy children and even enjoy grandchildren. In the existing circumstances, the medical establishment throughout the world often recommends assisting people who are HIV positive to realize their right to parenthood.
The virus itself is located in the seminal fluid. The sperm-washing technique separates the fluid from the sperm cells themselves (in which there is no virus ). The method was developed in Italy, and the first child born in the wake of its use is now 17 and does not carry the virus.
This method was first tried in Israel nearly a decade ago. Physicians in the virology lab of Rambam Medical Center, in Haifa began using it in June 2002, and the first child was born in December 2003. By 2005, more than 30 children had been born following this treatment without any cases of infection in either the mother or the newborn. The method was considered experimental, however, and the Health Ministry stopped its use in 2005.
In Israel, where accessibility to fertility treatment is extremely high, women who were HIV positive could not get in vitro fertilization until 2010. From 2005, the AIDS Task Force was in contact with the Health Ministry to ensure that women who were HIV positive could realize their right to fertility treatment, which is available to every Israeli woman under the National Health Insurance Law. Following a petition to the High Court of Justice, the Health Ministry established a committee of experts to examine the possibility of offering fertility treatment to HIV carriers, as well as to those who have Hepatitis B or Hepatitis C.
In April 2010, after many delays and a legal battle that lasted almost five years, Rambam Medical Center opened the first unit in the country that provides fertility treatments, including the sperm-washing method, to women and couples who live with HIV. A similar unit has since opened at Hadassah University Hospital in Ein Karem, Jerusalem.
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