5 Ways that HIV Criminalization Hurts Women and Children

Back in 1998, when I first learned of a woman in Oregon who was going to court because she was HIV+ and wanted to breastfeed her newborn son, I had never heard of HIV criminalization.  As I moved forward with shooting the documentary, This Child of Mine, I began to see how laws and practices in the US and around the world often impact women, particularly those women without the means to fight back.

Many of the laws are well-intentioned efforts to stop the spread of HIV. We’ve all heard the horror stories of at-large psychopaths, intentionally infecting unsuspecting one-night-stands with HIV. But the vast majority of HIV “criminals” do not fall into this category. In fact, research shows that women are inordinately impacted by the criminalization of HIV.

So, without further ado:

5 Ways that HIV Criminalization Hurts Women and Children

1. You’re in trouble if you don’t consent to HIV testing.

In the US several states now have laws mandating HIV testing for pregnant women and newborns that can throw rights to confidentiality and informed decision-making right out the window.  Read here about one case where a pregnant woman in New Jersey was tested and her HIV+ status disclosed, both without her consent. Later, HIV medications were mandated for her newborn, and she temporarily lost custody of him.

2. You’re in trouble if you ask too many questions about HIV treatment.

Even though there is no law in the U.S. that mandates HIV treatment for children, if you resist treatment - or even ask questions -  a doctor, nurse or even a nosy neighbor can turn you in. This Child of Mine tells the story about a mother from Maine who was reported for negligence by a doctor just for questioning him about the safety of an experimental drug trial for her son. 

3. You’re in trouble if you get pregnant in the first place.

In Uganda, for example, the government is considering a bill that would make it a crime for people to transmit HIV, including mothers who infect their children. In other parts of Africa doctors have been sterilizing  HIV+ women without their consent. And even though no such measures have been taken in this country, the court of public opinion often still stigmatizes the pregnant HIV+ woman as irresponsible or even criminal.

4. You’re in trouble if you tell. You’re in trouble if you don’t.

As reported earlier, not disclosing one’s HIV status can lead to criminal prosecution, loss of custody, incarceration. But according to the AIDS Legal Network, there are a growing number of reports of HIV+ women who are abused or murdered by their partners for “bringing HIV into the family”. In other parts of the world, it is considered perfectly reasonable to ostracize, abandon or even kill your wife if she is HIV+.  

5. You’re in trouble, so you run.

Disclosure laws, mandated testing, and the pressure to treat HIV+ children are intended to protect people, save lives. But as I discussed in Families Underground, they often have the opposite effect. When people are too scared to speak up, they often keep their mouths shut; when they are forced into corners, they often run. And opting altogether isn't going to solve problems; it can only create new ones. 

RESOURCES:

REPEAL HIV Discrimination Act

Sponsored by Congresswoman Barbara Lee (D-CA), The Repeal HIV Discrimination Act is intended to eliminate discrimination in the law for those who have tested positive for HIV.

Positive Women’s Network

The mission of the Positive Women’s Network is to prepare and involve HIV-positive women, including transgender women, in all levels of policy and decision-making to improve the quality of women’s lives.

HIV Law Project

Through innovative legal services and advocacy programs, The HIV Law Project fights for the rights of the most underserved people living with HIV/AIDS.

Center for HIV Law and Policy
The Positive Justice Project is the Center for HIV Law and Policy’s response to stigma driven laws criminalizing people with HIV and AIDS.

The Case of Eliza Jane, Part 1

In my previous post I wrote that the critics of former AIDS dissident, Christine Maggiore, claimed she was potentially causing the deaths of countless children.  The war came home in the most devastating way possible when Christine's own daughter, Eliza Jane, died at three years old. 

In this two-part article I'll take a closer look at the case of EJ, and share my own experiences in documenting this tragedy and its aftermath.

PART 1: Eliza Jane's Story

 

After the death of her daughter, Christine Maggiore, a vocal activist in the AIDS dissident movement, was called everything from a child murderer to denialist bitch, and, yes, Andrea Yates. 

Bloggers raged that “she had killed her daughter as surely if she had put a gun to her head”.  One sadistic idiot got hold of a picture of Eliza Jane, blacked out her eyes, and posted it to the web with the caption, "See you in Hell, Mommy!"  Another playful quipped, “I'd ask if I'm a horrible person for laughing my ass off when I read this….”  

(Yes, you are.)

Christine accused her anonymous hecklers of using her daughter as a "crucible" in the war between AIDS dissidents and dogmatists.  Nevertheless, the question remained. Was Christine Maggiore in denial about HIV? Did her daughter die because of it?

Amoxicillin or AIDS?

In 2005, Christine Maggiore and Robin Scovill’s three-year-old daughter, Eliza Jane, developed an ear infection. They gave her Amoxicillin, a common antibiotic. Almost immediately EJ began throwing up and experienced trouble breathing. Her condition worsened throughout the day and that night.  EJ was rushed to the hospital.

Christine told me that that at the hospital ER doctors asked her and Robin a series of questions that might help them explain why an otherwise healthy three-year-old child was dying.

The questions ranged from what chemicals and medicines they had at home, to who had access to EJ, exotic pets, The doctors performed various blood tests, chest scans, and x-rays.  They didn't ask Christine if she was HIV+, and Christine didn't tell them that she was. Four hours after arriving at the hospital, Eliza Jane died.  And Christine and Robin still had no answers. 

They didn't get any until months later, Christine recalled, when someone “tipped off” the Los Angeles coroner’s department as to who she was.  At that point,  Robin said, “a light bulb when off in their heads.”  New tests were performed and the official cause of death determined: Pneumocystis Carinii Pneumonia, or PCP.

An AIDS-defining condition.

Fallout

The coroner’s report was released to the media before the Christine and Robin had even received a copy. The Los Angeles Times published the front page article, “A Mother’s Denial, A Daughter’s Death” (http://articles.latimes.com/2005/sep/24/local/me-eliza24),  and almost overnight Christine went from grieving mother to villainous AIDS denialist who had gotten what she deserved. 

Christine and Robin were investigated for negligent homicide. Detectives interviewed their friends, neighbors, their pediatricians, and teachers at their son, Charlie’s, school. Fearing that they might lose custody of Charlie, Christine and Robin proactively tested him (and Robin) repeatedly for HIV. All tests came back negative. 

The homicide case was eventually dropped when investigators believed that it would be difficult to prove medical negligence since Christine and Robin clearly had sought regular medical advice from numerous doctors for both of their children since birth.  

Meanwhile Christine and Robin pursued their own theory that it was a fatal reaction to the antibiotic that had taken Eliza Jane's life, not AIDS.  During one of our last interviews, they tried to describe to me what day to day life was like in these darkest of moments:

Robin: Losing EJ…there’s a – it’s like a bomb dropped in the middle of our family---

Christine: --and it goes off every day. It just doesn’t stop.

Robin: There’s no chance to even clean it up right now. We’re just sort of dealing with our ringing ears and the debris of that. And there’s just a hole. That I can’t imagine will ever be filled again.

There was no time to grieve. No time to sit quietly and remember the daughter they had lost. Only a fight that was long from over. 

Coming up in Part 2: Was Christine Maggiore in denial about HIV?