Saturday, June 2, 2012

Where Are They Now? 

In 1999 Kathleen and David Tyson made national headlines when they fought the state of Oregon for custody of their son, Felix, after Kathleen told doctors she intended to breastfeed him even though she was HIV+. (full story). She and David were charged with “intent to harm” and lost legal custody of Felix. 

I first met Kathleen just days before she and her husband, David, were facing a court hearing that would decide the fate of baby Felix. Despite their unimaginable anxiety during that time, they agreed to be my first interview subjects for This Child of Mine.

They told me how shocked and devastated they had been upon discovering that Kathleen was HIV+.  How they had spent months doing research, talking to doctors, specialists, and other parents in their situation, as they tried to navigate their way through the ordeal. But as David later recalled, “they had us over a barrel: they had [legal] custody of our son.” 

The Tysons lost the case. Although they were allowed to keep Felix at home, the state of Oregon retained legal custody, and took charge of all medical decisions for him. 

That was thirteen years ago. 

Today, Kathleen and David live in the same small city of Eugene, Oregon. The state restored legal custody of Felix to them in 2001. Felix is HIV-negative, as is his twenty-three year old sister, Faye, and David, his father. 

Although Kathleen continued to test positive for HIV, she decided years ago to “opt out of the system” altogether. HIV became sort of a distant, uncomfortable memory of those early, frightening days after her diagnosis –literally in another century – that just didn’t have place in their life anymore. 

Until the the summer of 2010. That’s when things got a little crazy. 

David and Kathleen were going through a difficult time, not unlike many of their neighbors. David, an electrician, was out of work. Kathleen was working full time at several jobs, and going to school to become a physical therapist assistant. Mortgage bills stacked up and they were in danger of losing their home. 

The stress began to take a physical toll on Kathleen. She felt tired a lot. She got a cold that she couldn’t shake. But knowing that she had to keep it together for her family, she kept going. Finally, under the weight of it all, Kathleen says, she just “crashed”.  

Kathleen went to her long-time family doctor who could find nothing clinically wrong with her, and referred her to an infectious diseases clinic. After being admitted into the hospital,  Kathleen was diagnosed with Pneumocystis Carinii Pneumonia (PCP), and  Candidiasis: two AIDS-defining illnesses. She told me, "I remember feeling that for the first time in my life I was not going to be able to pull out of this all by myself.” 

Kathleen saw an HIV specialist and told him her story of life with – and without – HIV. She nervously told him about the choices she had made for Felix and herself, and was relieved when he didn’t seem shocked or outraged.  After they talked, the doctor ran some tests, which revealed a high viral load. He told her finally, that despite how long she had gone without incident: 

You are now and AIDS patient.” 

For an entire decade Kathleen had lived simultaneously with the knowledge that she was HIV+, and the belief that HIV was irrelevant to her life.  She had been raising her children, running local marathons, paying bills, working, eating, sleeping - not waiting expectantly, courageously, for the hammer to drop. And then, that day in the doctor’s office, it did. Now Kathleen needed to make some decisions.

To her surprise the doctor did not bring up antiretroviral drugs again for two months. Instead he treated her clinical conditions and gave her time to recover, which she did. At that point, he told her it was time to seriously consider HIV treatment. "I decided to trust him on this for a little while because he had shepherded me through this crisis.”  

 It was a difficult adjustment. At first, the drugs made her feel sick all day. Her doctor suggested she take them at bedtime, which made a big difference. But she feels dizzy at night and sleep does not come easily. She says she has learned to cope with it. 

 "I don't really know if I'm making the right decision about the medication. That is tough to know. But I do know that in the last year and a half, I've gotten back to a more vibrant state of health. I can't know exactly what has contributed to that, but I'm pretty sure it is the dedication to yoga which has rebuilt my strength." 

Ideally, Kathleen would like to get off of the meds but she is concerned that her doctor might refuse to see her if she doesn’t stick to the regimen. So she takes them every day, continues with yoga and has made "a huge commitment to kale and brown rice".

Back in 2005, during an interview, I asked Kathleen if she was worried about being HIV+.  She answered,  “I’m not the kind of person that thinks that bad things are going to happen around every corner. I have a positive attitude, things are good.”  

That always stuck with me – it was not false bravado. It was an genuine outlook on life that most only aspire to, myself included.

 So I asked her about it while we were on the phone a few weeks ago.  Kathleen chuckled a little sadly. “I don’t know if that’s how I am anymore.  I never really had to confront [being HIV+] before because I never got sick. Now I don’t quite know what to think.” 

Does this mean Kathleen now sees her past decisions about HIV as a mistake? 

Kathleen spent some time thinking about that question and emailed her response a few days later. I'm including it here, mostly in it's entirety, because I think that there are many folks out there, like Kathleen, who have come through their experiences with HIV and found themselves down the road -still on the road - with even more questions than answers. I don't want to mince her words. Here's what she wrote:

"I've been thinking about your questions this week, and I think what I can say about it is that no, I would not have changed what I did in the past regarding this. I think we made the right decisions at the time with the information we were able to access. That information would include everything we could find from a dissident point of view, as well as information from the CDC website, National Institutes of Health websites, and published papers on various studies that were done. 

 So no, I don't think we made mistakes, and even now after having had an AIDS diagnosis and recovering from that, and out-living that diagnosis I feel like the only thing to do is to carry on with trying to live the best I can. The AIDS diagnosis was just a big kick in the seat for me, really, a message to get on with living better. So things like diet, stress, how I spend my time, those things all got right up in my face. There is only so much time in life to try and get it right."

For more about the story of Kathleen and other families who have had to make difficult decisions about HIV treatment for themselves and their families,  order This Child of Mine today. 

Tuesday, February 14, 2012

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.

  1. 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. 

  1. 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.

  1. 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+.  

  1. 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. 


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.

Friday, February 3, 2012

HIV and Sex Crimes?

It's been over twelve years since I first set out to make the documentary, This Child of Mine, about parents who faced criminal charges of child neglect, abuse and homicide for refusing HIV medications for their kids, and choosing to breastfeed.

The video below, Perpetuating Stigma, tells another story of the criminalization of HIV, particularly as it affects women. In the US, where 36 states have laws criminalizing HIV and exposure, women have been charged with assault with a deadly weapon and sex crimes simply for not disclosing their HIV status. And yes, people have done hard time for these sex crimes.

Let me say that again. Sex crimes. Meaning if you are HIV+  and have consensual sex but fail to mention your status, you could be prosecuted as a sex offender. Lumped in with with rapists and child molesters, and forced to live with the same stigma that goes along with that prestigious title for the rest of your life.

Wednesday, February 1, 2012

Sex- Edmageddon

The New York City Department of Education now requires that both middle and high schools must include medically accurate sexual health courses in their curriculum. HIV Law Project was instrumental in bringing about this mandate.   "This comprehensive sex education curriculum has nothing to do with endorsing sexual activity," HLP explains.  "It is about acknowledging that over 50% of young people in high school are having sex. We cannot ignore this. We have an obligation to keep our young people safe. It’s a health issue like any other." 

Having just had "the talk" with my own son shortly after he informed me with a tired eye-roll that he "already knew everything," I can say that, yeah, kids will talk and they're not talking about the the things I was talking about when I was nine.  I shudder to think what they'll be mulling over at 13. Or doing.  That awkward filmstrip class that I got when I was in sixth grade might not cut it with our worldly tweeners nowadays. 

But check out this clip of Sean Hannity where he equates New York's new education mandate to basic training in  S&M, oral sex with braces, fetishes, porn stars, vibrators and bestiality.    

Hmm.  If that's the case I guess we can expect more kids to stick it out to graduation. So that's a plus.

But seriously, somewhere between sexless sex-ed and Hannity's scene from Fellini Satyricon  there is a valid issue here:

Does Sex Ed Undermine Parental Rights? 

Authors Robert P. George and Melissa Moschella  ask their NY Times readers,  "Should the government force parents to send their children to classes that may contradict their moral and religious values on matters of intimacy and personal conduct?"

What do you think?

Sunday, November 20, 2011

I’m HIV+ : Can I Breastfeed?

The answer to this may depend more on where you live than how safe it is. 

In a recent podcast with How Positive Are You, Marian Tompson, a co-founder of La Leche League International, talks about her long-time search for answers to questions about breastfeeding and HIV.

Marian remembers back in 1997 when the World Health Organization (WHO) published its recommendation that HIV+ women should not breastfeed. Period.  Marian questioned the science behind these recommendations and began the online chat group, Another Look, to examine current research on HIV and breastfeeding. She invited doctors, nurses, and policy-makers from both sides of the issue to participate in the discussion “because I felt that we really needed to listen to each other.”  

I interviewed Marian while doing research for This Child of Mine in 2000.   Back then, one of her biggest concerns was that the lack of compelling evidence that breastfeeding while HIV+ was dangerous. In fact at least one study showed that among mothers who exclusively breastfed, there was no higher risk of HIV transmission than among mothers who formula fed

Someone must have been listening. In 2010, after a series of new studies that demonstrated strong evidence of positive health outcomes for breastfed HIV-exposed babies, WHO and UNAIDS reversed their earlier recommendations.  Now mothers are advised to exclusively breastfeed for six months in conjunction with antiretroviral treatment (ARV) for themselves and their babies.

The catch is that, in reality, this recommendation only applies to women living in resource-poor countries where formula feeding can be a death sentence because of the lack of access to clean water, and the long-term sustainability and cost of formula feeding. In most countries, while there are no laws prohibiting HIV+ mothers from breastfeeding, choosing to do so can result in a mother losing custody of her child. Marian refers to a recent study of mother-baby AIDS clinics in Chicago where nurses were asked in a questionnaire what to do if an HIV+ mother said she wanted to breastfeed. The unanimous response? Time to call the lawyers. 

In the podcast Marian talks about a few cases where this has happened, including the 1999 case of Kathleen Tyson, one of the mothers in This Child of Mine. In fact, Marian says that for a long time La Leche League counselors were afraid that supporting HIV+ mothers who wanted to breastfeed could land them in jail, and passed all calls of this nature on to Marian.  

She points out that even now, over ten years later, with new research and guidelines,  there are still very few resources for HIV+ moms who want to do something differently than they’re told. Many end up lying to their doctors, their neighbors, their friends -even going underground   to do so.

Tuesday, November 8, 2011

Why am I a better parent when my kids are asleep?

For the past few months I have been leading a fairly erratic double life of substitute teacher by day, dance studio employee by night. (No, I don’t dance. I’m not nearly that cool.)  And lately I miss the days when my husband was at work until 7 or 8 and I was home with the kids, making fish sticks, hearing about handball bullies at school, drawing the lollipop card in Candy Land.

Until the occasional nights when I am actually home doing those things.

I know I should be pleased that the no-homework policy at my son’s school affords us more quality family time. But let’s face it: we don’t play chess, and Jack just got a new IPod Touch for which we can’t seem to hammer out acceptable terms. So family time derails quickly into the familiar:  
“Five more minutes?” 
“No, now."
 “But I’m almost done with this level.” 
“Turn it off now.” 
 We can go for hours on that conversation alone.  So much for quality.

Or there’s my four-year-old daughter whose new favorite game is Neighbor Picnic. Emma spreads a blanket, takes out every pink plastic spoon, fork and dish from her picnic arsenal, and we begin the game on her signal. 

First we double-kiss, Real Housewives style, and she offers me lobster, cookies and miso soup. Sometimes she brings her baby, Sparkle Starfish, for me to rock to sleep while we talk about her job at the pickle factory. I know what you’re thinking. And yes, the first 600 times we played it was super cute. But now, a few rounds of neighbor picnic and I start drumming up excuses to check my computer every 12 seconds, for example, to see if it’s going to rain. You know, in case we’re planning a picnic. She nods knowingly and I feel like a jerk.

Then it’s 14 reminders to brush teeth, and, no you can’t wear your toy pumps and angel wings to bed,  who taught you the word idiot, Halloween is O-V-E-R, don’t point the nerf gun at your sister, and my favorite, this apartment is TOO SMALL for Baby Knight (suffice to say that Baby Knight involves hiding, chasing, lunging  squealing, and eventually tears.)  By lights out (although they fall asleep with the lights on) I’m literally giddy. I know, I suck, but I’m giddy. For about five solid minutes.

Don’t know if it’s all that rich lobster or the emotional toll of being outwitted by angry birds at every obstacle, but these kids crash hard and fast. All’s quiet on the western front and in all that silence I miss them. Every night I come back in the room to shut off the light and watch them sleep. Wait on the edge of the bed for one of those tiny sleep sighs to escape in the darkness. Then I think if I had five more minutes I’d happily read one more book. Go over that student council speech one more time. Join forces with Baby Knight, pick up a nerf gun and fire away at invading dragons. Because tomorrow night I’ll be back at the dance studio. Shortly after that, they’ll be off on real picnics. And they won’t invite me to tag along.  

Someday I’ll learn.

Tuesday, November 1, 2011

Teens on Gardasil: What do they think?

I recently posted some articles about Governor Brown’s new law that will allow children as young as 12 to receive the Gardasil vaccine without their parents’ knowledge or consent.

In case you’re just hearing about the newest vaccine debate, here’s some info about Gardasil from the website to get you started:

GARDASIL is the only HPV vaccine that helps protect against 4 types of HPV. In girls and young women ages 9 to 26, GARDASIL helps protect against 2 types of HPV that cause about 75% of cervical cancer cases, and 2 more types that cause 90% of genital warts cases. In boys and young men ages 9 to 26, GARDASIL helps protect against 90% of genital warts cases.
GARDASIL also helps protect girls and young women ages 9 to 26
against 70% of vaginal cancer cases and up to 50% of vulvar cancer cases.

So why wouldn’t parents want their kids getting this vaccine?

Some parents are concerned about side effects.  Others fear that vaccinating children against STDs will give kids a green light to jump in the sack. Jerry Brown’s law, which takes effect in January, 2012, simply removes parents’ from the equation. Problem solved.

But noticeably missing from all the noise are the voices of those most affected by the whole debate: the kids. If we’re going to plop this responsibility in their laps, it seems fitting that we hear what they have to say about it.

So I asked around.

Let me preface by saying, there is no particular research design here. The 40 or 50 kids I surveyed ranged in age from 14-19 and reside in Los Angeles county.  I explained the law, briefly explained what Gardasil was – a striking number of them had never heard of it – and described the concerns on both sides of the issue.  The quoted answers below represent the most common responses I received. 

Here’s what they said:

What do you think of the law?
“If the child wants to take that risk, I think it’s okay but the child should be informed, given all the information so that they would be smarter on the decision they are going to make.”

“Nobody should be denied vaccines for any reason.”

“Actually [Gardasil] should just be mandated like other vaccines you need for school.”
"It’s wrong because [Governor Brown] should at least talk to the parents or have them vote.”

“This law may expand for other medical uses.”

"This is not okay. It sounds like [the law] was done out of a whim or something.”

Are kids old enough to make this decision?
“As teenagers we know what we are doing.”

“any [kid] can be educated about this if their doctor is willing.”

“When you feel that it’s your responsibility you rise to the occasion”.

“Every kid should have the right [to make the decision]. Because it’s their responsibility and their own body.”

"12 year olds are  are still young and don’t know what they are doing. I mean at least the kids should be a little older, like 15  or 16,  so they can actually think more carefully for themselves."

“[Kids] are more interested in playing and are not going to be able to make a serious decision."

“If kids are able to get their own medicine, they should be responsible to do anything.”

What about the parents?
“Some parents are worried about side effects. But what’s worse, a few side effects or cancer?”

“A lot of parents are uninformed or even ignorant. Look at the whole autism debate.”

“Kids can take this vaccine behind the parents back and if something goes wrong it’s the parents’ responsibility and nobody wins except for the drug company [who]  wins your money.”

"Parents care and they know what’s good and bad for kids.

"If the kids are making decisions like that, what are parents for?”