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Living with HIV in the Jewish community

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When I was diagnosed with HIV more than 20 years ago, I barely knew anyone with this disease, let alone someone else who was Jewish with HIV. My general practitioner at the time was Jewish, though, as was my infectious disease specialist. They told me about a Passover seder put on by Holy Blossom Temple in Toronto for people with HIV called the Third Seder. It was there that I first met other Jewish people with HIV and recognized that there were Jewish people in the community who cared about us. For many years, this tradition continued, and I always looked forward to it.

As HIV changed from a deadly illness to a chronic, manageable condition with the advent of effective drug treatments, everyone heaved an enormous sigh of relief. The Third Seder stopped, as did much of my involvement with the institutional side of Judaism.

I did, and still do, have some very close Jewish friends with HIV and in the HIV community. We share our own brand of Jewish humour about having this disease, and about the world in general. We have joined a non-traditional Jewish synagogue led by a lesbian rabbi and attend High Holidays there each year, marvelling that we have lived more than 20 years longer than our doctors predicted.

READ: PANEL ON JEWS AND HIV SHEDS LIGHT ON LINGERING STIGMA

My life has changed beyond recognition. I was a lawyer with a good corporate job when I found out that my husband had infected me with HIV sometime in the late 1980s or early 1990s. He became so depressed during our marriage that it just fell apart. In retrospect, he obviously knew about his diagnosis and did not know how to disclose it to me. Knowing that there were no treatments at that point, he probably did not know what to say.

I found out by getting tested after I became single. It was a horrifying shock. I soon became too tired to work. My successful career in the corporate world was over. I was 43 years old, and my life was in tatters. Although I was given a death sentence, I kept some shred of hope that treatments would come along in time to change the inevitable. Luckily they did. Almost overnight I became much better. Now, 22 years later, I am in my 66th year.

In recent years, it seems that the Jewish community has followed the rest of Canadian society and has come to believe that HIV is not a problem. And if it is a problem, then at least it is not one in the Jewish community. I don’t know the number of Jewish people with HIV in Canada today, but I do know that there are many people in this country who have this disease and need our help.

Many of them are women, often the most vulnerable to infection and to poor health outcomes, even though treatments are available, because they do not have the economic resources and the power within their familial relationships to protect themselves or to pay for treatments. As Jews, we should follow the tenets of our religion and protect the vulnerable in our society. Whether we’re religious or not, the history of our own suffering at the hands of those who discriminate against us should be a lesson to us about how to treat others who are victims of discrimination.

I call on the Jewish community to renew its support for the cause of helping people with HIV to live healthy, productive lives. One very concrete way to do so is to encourage governments to ensure health care is equitably available to everyone in Canada, regardless of ability to pay or where in Canada they live. Another is to support social programs that ensure education, housing and employment opportunities for people who are disadvantaged, since they are at higher risk for HIV infection and poor health outcomes.

READ: IDF WILL ALLOW HIV-POSITIVE RECRUITS TO SERVE IN MILITARY

People with HIV definitely continue to face discrimination, even though we know that they pose no health risk to us whatsoever. There is still a stigma attached to this disease, maybe because of its relationship to sex and injection drug use. We blame people for getting this disease, even though they are not doing anything most people in the general population – yes, even Jewish people – aren’t also doing. 


Louise Binder chaired Voices of Positive Women, the Ontario HIV/AIDS organization for women, for over a decade and now is health policy consultant for the Canadian Cancer Survivor Network.

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