Easter Sunday, covered with Washington D.C.’s cherry blossoms, we arrived at the Holocaust Memorial Museum. Despite the warm spring sun, a shiver struck my almost ten-year-old twins, who are currently reading the diary of Anne Frank. When will there be a Memorial Museum dedicated to the people who died of AIDS? With over 25 million deaths, HIV has taken half as many lives as World War II, and if we continue to invest in wars instead of health, HIV may take even more lives.
Squeezing the hands of Kianosh (everlasting) and Arman (hope), I took a minute of silence to remember the many close friends and patients I have lost due to HIV. For half of my life, I have lived with the virus. Twice I almost died, first from HIV and then from its treatment. Now, I suffer more from the stigma of HIV than from the virus itself. As an AIDS dinosaur, I would like to share some personal experiences.
In 1988, I received the confirmation of my positive second Western Blot test in a phone booth at Teheran’s main post office. The day before, media spread that people with HIV will be prosecuted to prevent the spread of this American disease, transmitted by gay people. Iran is one of the many countries in which homosexuality is a crime punishable by death.
Since then, life with HIV in Iran has changed and I can now be openly positive. During my most recent visit, people on the street knew me from satellite TV, since they had seen the German documentary on the prevention of mother-to-child HIV transmission, with the example of our twins’ birth.
With the advent of effective antiretrovirals, I finally acquired a second life. At that time, many colleagues still considered it as unethical to assist a woman with HIV to become pregnant. I found help and we set up an expert meeting to draft the first guidelines for HIV-discordant couples who wish to have children. As a result, I found help and a dream came true, Kianosh and Arman. Ten years later, it sounds bizarre that we once felt that women with HIV should not have children. However, in Germany, people with HIV are still not allowed to adopt children and in many countries women with HIV are still sterilized
Gazing at the Obama family during the White House Easter egg hunt through a camera lens, the twins told me how much they missed their father. Dad was deported from the U.S. because of my HIV status, two days after President Obama announced on October 30, 2009 that the U.S. HIV Travel and Immigration Ban will be lifted. A stamp on my passport equates me with a criminal inadmissible to the U.S. and my HIV status is public, stored in the computer database available to the fingertip of any immigration officer as soon as my fingerprint is checked at US entry. My HIV diagnosis is about as old as the HIV ban, born in an attempt of governmental disease control. In 1987, in a climate of panic and homophobia, when AIDS was a death sentence and people feared they could contract HIV from casual contact, the US Health and Human Services Department added HIV to the list of exclusionary "communicable diseases of public health significance" barring people with HIV from immigrating, travelling to, or transiting through the US and implemented mandatory HIV testing for all immigrants.
Nine years ago, I challenged the US Embassy in Berlin by voluntarily disclosing my HIV status and applying for a US visa. To my surprise, the immigration officer explained that she would not discriminate against people with HIV, granted me an HIV waiver even though I did not qualify for the criteria, and asked me to go to the US to try to change the law. Working in the coalition to lift the ban at the Toronto AIDS Conference in 2006, was the last time I was able to leave the US and re-enter. Interestingly, the first part of my self-petition for a “green card” was immediately approved because being an HIV-positive academic was recognized as an extraordinary ability of national interest. However, my adjustment of status was finally denied in May 2009 because I am HIV-positive. Without pro-bono help of the HIV Law Project and the Weil, Gotshal & Manges law firm we would have been deported. After two decades of global human rights movement of thousands of AIDS advocates, the HIV ban is now history.
Today, my alarm bells ring when I hear slogans calling for “seek, test, and treat”. Under certain governments, these new methods of disease control may end up in the next holocaust rather than putting an end to the AIDS epidemic. I hope that one day AIDS will become history.
Read the multi authored blog from the AIDS Conference here