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 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? 

Families Underground

                  

If you didn’t know better, the idea of parents seeking medical freedom having to “go underground” may sound, well, paranoid. 


But during interviews for the documentary, This Child of Mine, HIV+ mother and AIDS activist, Christine Maggiore, remembered meeting dozens of parents who were in danger of losing custody of their children simply for being skeptical.

She told me about one mother who had sought out a second opinion about HIV treatment for her child when the drugs had made him ill.  Shortly after, at 10:30 at night, seven police officers arrived on her doorstep. They took the boy from his home and placed him in foster care.

In many of these cases Christine helped parents find legal defense, expert witnesses to testify at hearings, and in a few cases, a place to hide out when custody was at stake. She often advised parents to refuse HIV testing, change doctors, move. Her critics – and she had a lot of them – claimed she was in complete and total denial about her own HIV diagnosis, potentially responsible for the deaths of countless children whose parents had been misled by her kindly quackery. Her fans – there were a lot of those too – believed she had saved their kids’ lives.

Christine’s Story

Christine Maggiore was diagnosed HIV+ in 1992. Rather than lying down, waiting to die, Christine became an activist. She was a volunteer and public speaker for AIDS Project Los Angeles, LA Shanti Foundation, and Women at Risk, where she was a founding board member.

Several years into her diagnosis a doctor suggested she re-test. The results were inconclusive leading Christine to do her own research. She discovered the AIDS “dissidents”, a loosely connected network of scientists, doctors, and citizens from around the world who do not believe that HIV is the cause of AIDS.  Christine went on to write a book, What if Everything You Thought You Knew About AIDS Was Wrong? in which she  criticized the HIV/AIDS paradigm, the use of unreliable tests, and the efficacy and safety of treatments.

She also went on to get married and have children. She and her husband, Robin, chose not to have their children tested for HIV because “testing them can only confirm or contradict what we already know: our kids are perfectly healthy. So testing them is a bit of a roll of the dice that would lead to nothing but pain, heartache, problems, our house being sold and us on the run.”  Christine knew this - she had seen it happen many times. 

Paranoid or Prepared?

While I was making my documentary, Christine put me in touch with many families who had rejected medical recommendations for HIV and got into some seriously hot water. Not all of them appear in the movie, but I remember them well. Their stories are hard to forget. 

There was Sophie Brassard, a Montreal mother who lost custody of her children after stopping their treatment. Sophie “kidnapped” her children and fled to Morocco where she hid out for two years until her own failing health forced her to return to Canada. She used to email me as "Trixie" with "on the beach" in the subject line.  She used this code just in case someone was monitoring my email. Or hers. I'm not sure. But she was scared. 

I met “Diana”, an HIV+ mother who was stopped by police and taken to a grocery store to buy formula when doctors were concerned that she planned to breastfeed and turned her in. Her story was surreally comical, like a scene from Brazil, or Monty Python.

I met David and Kathleen Tyson who were turned into DHS for choosing to breast feed their newborn son.  Kathleen had tested HIV+ during her seventh of month of pregnancy.  After seeing security guards posted at Kathleen's room in the maternity ward, David, in a moment of panic, considered tying bed sheets together to climb down to the street with his family and flee. Four days later they lost legal custody of their son. 

I met Valerie Emerson who wound up in court fighting the state of Maine for custody of her son when she didn’t want to enroll him in a drug trial for aggressive HIV treatment. Two weeks before the hearing she had already packed suitcases for her family, just in case.

And I met Christine Maggiore, HIV+,  who was anonymously reported to Child Protective Services for breastfeeding her son, Charlie. 

In the documentary, Christine recalls that in forty-five minutes before the social worker’s arrival, she and Robin made a quick exit plan that they would execute “upon a certain signal” if necessary.  Following the visit from CPS, we see Christine’s panic escalate as she desperately reaches out to friends in far away places that could hide her family if the investigation goes further.

A Thick, Black Line in the Sand

It would be easy to say that parents should have the unconditional right to make choices for their children. That doctors are arrogant. That social workers are too overwrought with caseloads to make careful, thoughtful decisions.  It would be easy, perhaps, if the story ended with parents getting their day in court and going home victorious, children in tow. Often this happened. But the story didn’t always stop there.

During the time that I made this movie at least four of the people I interviewed died, reportedly of AIDS related conditions. Two of them were children. One of them was Christine. Another was her daughter.  Some might nod their heads smugly and say these parents – especially Christine- got what they deserved.  In fact a lot of people did say that and much, much worse.

But before you jump on one side or the other, look closer. 

Right or wrong about AIDS, Christine’s fight for families, including her own, illustrates a deep division between parents and doctors that continues to widen across a vast terrain, extending far beyond AIDS borders.  When doctors feel a child’s life is in danger they must intervene. With their actions they bring years of study, clinical practice, and experience. 

But when parents feel bullied within a system that fails to address their concerns they may draw their own line, and, like Christine once said, simply walk away. It seems to me that there should be - there must be - a middle ground on this terrain. A neutral place where parents can express concern and make decisions, doctors can provide care, and children can stay safe in their homes. Families together. Above ground.

What’s your story?

Have you ever disagreed with your doctor regarding your child’s care? Or are you a doctor who disagreed with your patient's choice? How did you handle it? Please respond here or email me privately at mychildmychoice@gmail.com. Or just share your thoughts. I welcome controversy and I don’t delete comments. 

Coming up next:  Some thoughts on Denial in the story of EJ.

Pro-Life for Baby Joseph

Do hospitals have the right to remove a child's life-support against the family’s wishes? 

15-month-old Joseph Maraachli suffers from Leigh’s disease, a rare but fatal neurodegenerative disorder. Back in October his doctors concluded that that he was in a vegetative state from which he would never recover. Consequently, the government-run hospital in Canada where Joseph had spent most of his short life handed his parents an oxymoronic order to consent  to remove his life support. Joseph’s parents requested that the hospital perform a tracheotomy instead so that he could breathe on his own long enough for them to bring their son home to die.

The hospital refused, stating that a tracheotomy was indicated only for patients who needed it for long-term care. Joseph didn’t. So they wouldn’t. As if trying to provide your child with a dignified way to die isn’t bad enough, now you have to go to court to do it.  But the Ontario Superior Court, too, rejected the family’s appeal.

Enter Priests for Life, a Catholic group that funded Joseph’s trip to a hospital in St. Louis, Missouri where he finally got his tracheotomy. In April, Joseph returned home to Canada with his family. They, along with their 15,000+ Save Baby Joseph Facebook friends are all praying for a miracle. Meanwhile, the Christian Broadcast Network has hailed Joseph’s plight as a “Pro-life victory”. Capital P.

Well, maybe it is, and maybe it isn’t.  I’ll give credit where credit is due but mere moments after the hospital’s decision came down, Joseph became a crucible for another agenda: the case against ObamaCare.

AHA!,  roared the critics with palpable glee. THIS is what you’ll get with a government-run health care plan. No choice, no freedom of health care! Hmmm. So, using this logic, can I assume that the current “freedom-based” private healthcare system would consent to an arguably futile, expensive procedure like the one Joseph got?

Well, okay, maybe not.  But with ObamaCare, get ready for death panels like the one that wanted to pull the plug on that poor baby.

But wait a minute, haven’t you heard the good news?? If you’re on life-support and you live in Texas you don’t even need a universal health care plan to set up a death panel ‘cause they already have a law for that.

Yup. The Futile Care Health Law, as it’s politely named in Texas, basically states that a hospital, in consultation with an Ethics Committee, can opt to discontinue life support when a patient is in an irreversible vegetative state.

Oh. So that’s what this is about? Ethics?

But hang on, it gets better. If the family objects, they get ten days to find another hospital. Now that’s ethical. Although, most states mandate longer notice for apartment evictions. And the best part of all?  This bill was signed into law in 1999 not by President Obama or some hippie-freak politician on the fast track to socialism, but  by one good-ole-boy-cum-Governor, George W. Bush. And other states now have similar laws but without the creepy deadline.

Look, I’m not trying to make a case for ObamaCare. But I do find it chilling that this family’s tragedy can be used so disingenuously, so sloppily, for a political agenda.  Would ObamaCare kill baby Joseph? No. Leigh’s Disease will. If his parents had insisted that the hospital keep Joseph alive indefinitely, at any cost- financial or ethical, that might have been different. But they didn’t. They accepted his imminent death; they just wanted it happen in the quiet comfort and grace of his own home.  

Ranting aside, it’s easy to espouse platitudes about the dangers of putting price tags on human lives. Someone still has to pay for it, and health care plans – government or private  - are universally dispassionate in making expensive decisions.  And nobody wants say it’s okay and even necessary to let a child die even when all efforts to support life will most certainly fail. Nevertheless, in my own pro-life way, I believe that even dying people should be able to choose quality of life and death, no matter the quantity. 

What do you think? Should the hospital have granted the Maraachli family’s request? Was it the ethical responsibility of the hospital to do so despite the clear futility of such a procedure in prolonging his life?  Please post your thoughts……