BY ASSEMBLYMAN MICHAEL SIMANOWITZ
On Tuesday, Dec. 1, World AIDS Day, Governor Andrew Cuomo received the World AIDS Day Leadership Award from the End AIDS NY 2020 Coalition. The governor’s work and demonstrated commitment to ending the AIDS epidemic in New York State is herculean.
However, more than 20 years before Governor Cuomo stood in the Apollo Theater announcing New York’s accomplishments, a self-described “Jewish grandmother from Queens” stalked the halls of the Capitol in an effort to bring common sense to the way New York was dealing with the raging epidemic.
In 1993, my mentor and predecessor, Assemblywoman Nettie Mayersohn, read an article in Newsday about a woman whose husband had become so ill, he had to be hospitalized. When she entered her husband’s ward, she found the doctors and the staff wearing masks and gloves. The doctors evaded her questions and finally one nurse approached her and said “please get yourself tested for AIDS.”
The article went on to point out that the nurse probably broke the law by even suggesting to the woman that her husband was infected with HIV, the virus that causes AIDS. The doctor and staff that refused to answer her questions were simply following the law at the time which prohibited notifying even the spouse of someone suffering from AIDS that their partner was infected. As it turned out, her husband was being treated for AIDS and eventually succumbed to it. Unfortunately, it also turned out that she herself was infected.
After looking into the situation, Nettie introduced the Partner Notification Bill, which would basically have treated HIV as any other sexually transmitted disease and require that if someone tested positive for HIV/AIDS, the Health Department had to notify their spouse or other known sexual partner that they may have been exposed to the virus and should themselves get tested. Knowing that the bill would have an easier time becoming law if she had organizational support, she reached out to groups that historically played a leading role on women’s issues.
The response she got was both shocking and hugely disappointing. Nettie, who had been named the NOW (National Organization for Women) Legislator of the Year in 1989 for her support of choice, gay rights and every other liberal issue of concern to women and the gay community, found that all of these same groups were opposed to her bill.
The powers that be, often referred to as “the AIDS industrial complex,” had determined that AIDS was to be treated differently than any other deadly communicable disease – the privacy of the infected individual would be more important than stopping the spread of the virus by that individual to others. It was then that she got her first exposure to the organized coalition determined to protect what she coined “AIDS exceptionalism.”
She then went to the New York State Medical Society for support and while they offered their support of her Partner Notification legislation, their representatives told her something that made her put her life on hold. Every newborn in New York State was being tested for the HIV/AIDS virus anonymously as part of a program run by the Centers for Disease Control to track the epidemic. Public health officials knew somewhere in the neighborhood of 1,800 babies in New York were testing positive every year – but New York State law said you could not tell the mother that the baby had been exposed to the virus because that meant the mother herself was infected and that she had a right “not to know.”
Even worse was the fact that so many of these HIV-exposed infants were not actually infected but were simply carrying their mothers’ HIV antibodies. If their HIV-infected moms knew to avoid breast feeding, a known method of HIV transmission, their lives could be saved. Unfortunately, the powers that be simply didn’t care.
Nettie then introduced legislation requiring all newborns in the state be tested for HIV and that their mothers be notified of the results, thus allowing the babies and their mothers to receive necessary and, in the case of the infants, life-saving treatment. Despite support from almost every public health professional and organization in the state, even this simple proposal took years to gain legislative approval because of privacy and civil rights concerns.
When the legislation finally went into effect in 1997, many warned that disaster would strike: mothers would refuse to go to the hospital to give birth, domestic violence would increase and discrimination against women with HIV would explode. None of those predictions materialized. As the governor’s announcement shows, in less than 20 years, we have eliminated mother-to-child transmission in New York State.
Nettie didn’t stop there. After the Baby AIDS Bill passed in 1996, Nettie spent the next two years fighting for passage of her Partner Notification bill, and then her bill to give rape victims access to the HIV status of their attacker. Then working with the very doctors treating HIV and AIDS, she challenged the regulations surrounding so-called “informed written consent” which again treated HIV differently than any other disease. Again, she won against all odds and finally brought some common sense to the treatment of this totally preventable disease.
Nettie endured protests at her home and office. But she never backed down. Nettie fought and fought and fought because she knew that her cause was just and that lives were at stake.
I am hopeful that under the leadership of Governor Cuomo, New York will soon celebrate a year with no new infections at all and that Nettie will be recognized for the countless lives her tenacity was responsible for saving.
Simanowitz represents the 27th Assembly District.