I'm also one of the co-founders of Women Alive, an organization by and for women who are living with HIV/AIDS. In 1991 we began producing an international HIV treatment newsletter for women.
One of our main missions is for all women diagnosed with HIV/AIDS to receive the treatment and information needed to sustain life. Women Alive was also created to address stigma and isolation among women. Isolation is a symptom of a poor public health response to the AIDS epidemic.
The issues of names reporting and expanded surveillance will have and have had an extreme impact on women. Let's begin to address public health issues in a responsible way.
I'd like to outline a few past actions taken by government and media which we will have to overcome in order to get statistically sound HIV data in an ethical manner.
In 1981 there were five women diagnosed with AIDS in the United States. If you were to do a literature search in the annals of medicine you would not find them under women or heterosexual women or bisexual women. You would find them under prostitutes: (1) lesbian (2) drug user (2) heterosexual (1) Caucasian (2) African American (2) Latina. This was the beginning of stigma for women in the AIDS epidemic.
The government would not even acknowledge the risks women faced, until 1993 when the definition of AIDS was finally expanded to include the symptoms women with HIV die from. AIDS cases jumped 117% in women by the third quarter of the 93.
In 1986 Cosmopolitan magazine printed a cover story written by a psychiatrist stating that women could not get HIV if they practice missionary style sex. This contributed to stigma and encouraged isolation for any woman already infected and the thousands to follow.
Women AIDS activists protested against Cosmopolitan. There was no response from the government. From then on, every woman who has ever tested HIV positive, has been asked by providers, family, public health, media, and the general public: "How did you get infected?" In most cases men do not get asked in the same judgmental way.
What I am asking you today, is for you take responsible action and reasonable consideration when making public health policy. Please keep in mind how your actions impact the people who are expected to live by your decisions.
Confidentiality is extremely important to most women, due to our roles and responsibilities that we carry in society. Most women who are living with HIV are single parents and are sole providers for the family. There is no safety net to fall back on, not even in times of illness. Breach of confidentiality means different things and carries different ramifications for different communities. Some may lose their housing or jobs. Some may be disowned by their communities or families. Some may lose their only support systems and others their only means of financial support.
Women and people of color communities and poor people will ultimately suffer more than others if confidentiality is breached. As public health officials, it is your job to put the strongest safe-guards in place to protect the majority of people who are at risk of experiencing discrimination and stigma.
Names reporting is important to some and not to others. But what does names reporting and expanded surveillance actually mean? If it means that when I test for HIV, my name is reported to the Health Department and that's the end of it, ... well, fine. But, if it means that I test positive and then I get a knock on the door from a public health field officer inquiring about what actions I've taken, and what the names of my sex partners are, that's not OK. Or, if I get a call at work wanting to know where I receive my care, or have my children been tested?, and if I refuse to answer them, and I have not accessed care, and then child protective services is contacted and then I lose my children; that is definitely not O.K.. In fact, this is a true story which occurred under the Los Angeles partner notification program. I pose the following questions:
Let's be honest, the majority of people who test positive are in some kind of care in Los Angeles County. Most, if not all, people in Ryan White Care funded services have already had their names reported.
Their privacy is not protected because with every contact, you run the risk of breaching confidentiality.
With the case scenario just posed to you, we know that coercion can happen in LA, especially to women.
Most likely the legislation will be written to address names reporting on a state by state basis.
It is our job as residents of Los Angeles to not create a situation of fear and coercion. It's bad public health. It destroys lives and contributes to the barriers we already face in trying to contain the epidemic.
And in the end, what's going to happen when the partner notification folks knock on "Mr. Boyfriends" door? Who is going to get their asses kicked? we all know, it won't be the men.