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 the Tysons: How Did We Get Here? (Part 2)

It’s hard to imagine that something as natural and life-giving as breastfeeding could be considered criminal. And yet, in some cases, it is.

David and Kathleen Tyson were shocked to discover that Kathleen was HIV+ when she was seven-months pregnant with her 2nd child. She had no risk factors. She was extraordinarily healthy. She ran marathons. She ate organic food. She didn't use drugs. Her husband and 10-year-old daughter both tested negative.  This is the story of their fight to make their own medical choices, and how it cost them legal custody of their newborn son. 

On December 7th, 1998, Kathleen Tyson went into labor. Her husband, David, rushed her to Sacred Heart hospital where doctors advised her to take AZT during labor and delivery to stop transmission of HIV. Kathleen refused all treatments. Kathleen had a C-section, as is recommended for HIV+ mothers. Felix was born at 9:55 PM that night.

Kathleen and David had decided to skip the recommended AZT treatments for Felix because of their concerns about unknown long-term side effects. Kathleen had also decided to breastfeed Felix, despite the additional risk of transmission, generally estimated to be around 14%.

Kathleen describes those first hours of Felix’s life as “blissful”. But around 2:00 the next day, an infectious diseases pediatrician visited her in her room and “counseled” her strongly against breastfeeding. The doctor also urged Kathleen to begin AZT treatments for Felix. In the film Kathleen explains that she had based her decisions on her research, and “on my health and on the health of our other child and my husband David because they are all fine, we're all fine. I didn't  see a risk there.”

The hospital did see a risk - apparently a substantial one - and contacted Child Protective Services. Terrified now, Kathleen called the nurses in to ask for formula and bottles. Despite this, a few days later, the State of Oregon officially removed legal custody of Felix from the Tysons. David and Kathleen were charged with Intent to Harm. 

Four months later, the Lane County Circuit court ruled at the hearing that Kathleen and David could keep Felix at home but legal custody would remain with the State of Oregon. Kathleen could not breastfeed (nor feed him any of the milk she had stored). The state also held the right to routinely test Felix for HIV and make subsequent medical decisions for him. 

Kathleen and David’s case raised important questions about HIV and breastfeeding, both clinical and ethical.  But the biggest question people seem to ask?

 Why would a mother take the risk in the first place?

When you have a safe option that essentially eliminates risk of HIV transmission versus on that does not, why not just give your baby a bottle and be done with it?

But you have to understand that Kathleen did not think she was sick. No, this wasn’t denial. It simply didn’t add up. Clinically she was fine. She hadn’t passed HIV on to her husband, despite the fact that sex is considered to be a much more effective transportation system than breastfeeding, And she had breastfed her ten-year-old daughter for 3 years.   Three years. Still no HIV transmission.  So why now?

Kathleen had done some research on cross-reactions on HIV tests leading to false positives, and discovered that, though uncommon, it does happen. She had had some mild exposure to an infectious disease in Guatemala back in the 80s. She had had an inoculation for hepatitis B. She had had a prior pregnancy.  According to her research, all of these, on their own or in combination, can cause a false positive.

Bottom line, Kathleen considered her diagnosis to be wrong and therefore irrelevant. Thus breastfeeding did not pose a risk. And, on the flip side, formula feeding did pose significant health risks, all of which are well-documented.

I’m not saying that Kathleen made the right decision. I’m not saying that she didn’t.  If it were me, I’d probably follow the doctor’s orders because I tend to be wishy-washy and obey authority. Then again, I have been blessed with the luck of good health thus far for both of my children. Faced with making major life and death decisions in the breath of a moment, it’s hard to say what I’d do.

Which is really my point.  It may be easy to hear Kathleen’s story and think she’s crazy for taking such risks with her own child, but you don’t know until it happens to you. Crazy can mean giving your child toxic medication when there’s a strong likelihood that he’s not even sick. Crazy can mean needlessly depriving your baby of a lifetime supply of protection from all sorts of diseases and problems.  By the way, have you heard that exclusive breastfeeding has been shown to have NO greater risk of transmission than formula feeding? Back in 1999, that might have sounded crazy too. But it turns out there’s some pretty good evidence that it’s true. 

Stay tuned for more on that next time.

And coming up later in the month: An Interview with Kathleen Tyson today. 

The Case of the Tysons: How Did We Get Here?

Imagine finding out you are pregnant with your second child. You take some routine prenatal tests and discover that you are HIV+ positive.

Suddenly your world turns upside down.

You are told you must begin treatment immediately to prevent passing the virus on to your child.

The very next day you begin to experience nausea, fatigue, diarrhea. You worry. Will these drugs hurt my baby?

Your questions and fears are summarily deflected by the chanting of global statistics and risk-benefit factors.  Like a drum that keeps the beat of your rising panic.

None if it makes sense.

You live in a small town with your family. You run marathons. Eat organic. You never did drugs. Or were promiscuous. In fact, you and your husband have been together for over decade.

You go to a support group, because that’s what people like you are supposed to do.

(People like you. People who are going to die of AIDS. People who are not going to see their children grow up.)

You tell the folks at the group your story.  Does your husband have it? You tell them he hasn’t been tested. Heavy sighs. Rueful glances. They’ve seen this before.

So your husband gets tested.

He’s negative. So is your ten-year-old daughter. Whom you breastfed for 3 years.

None of this makes sense.

Your uncomplicated pregnancy becomes a surreal schedule of scans, tests, and anonymous specialists. They politely revolve in and out of your life to that drumbeat, getting louder now.

You do your own research and discover others that have the same questions as you.  You decide to stop the drugs and you feel better. Your doctors don’t agree with your choice, but what can they do?

You son is born and he’s beautiful. You tell the doctors you don’t want to put him on the meds. You say out loud that you plan to breastfeed.  This is a mistake.

The nurse tells the doctor. The doctor tells the hospital attorney. A rash of phone calls are exchanged. A petitioner from the court arrives. Armed guards stand outside of your room in the maternity ward.

Within 24 hours your son, less than a day old, is removed from your legal custody.

You wonder in terror, how did I get here? And then your nightmare begins. 


Coming up next: The story of David and Kathleen Tyson as they fought the state of Oregon for the right to make their own decisions for their newborn son. 

An Interview with David Crowe and Terry Michael

Please check out the podcast, How Positive Are You? An Interview with Director, Jennifer Wolfe ,  to hear about the making of the documentary, "This Child of Mine".

In the interview we discuss the experiences of the families from the movie, and their personal fights to make medical decisions that go against their doctors' orders, as well as my own interests and viewpoints on these issues.