Thursday, September 15, 2011

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. 

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  1. A coleague of a friend of mine in Scotland has three children aged 18 ,20 and 23. When the mother of these three children gave birth to her children she was tested without her knowlege for HIV. This only came to light around a year ago through a nurse going over her papers. When the mother questioned why hadnt she been told of this , she was told it was standard procedure. When the mother asked , "what if id tested positive" , she was told that they wouldnt have been allowed to tell her as she wasnt told she was being tested. This is probably were they get the numbers from that theres ex amount of people living with this so called virus without knowing. Hardly a bloody health risk then !

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  3. Hi there,
    I believe that in the "early" days, this sort of anonymous testing was done fairly routinely for screening and epidemiological purposes. In the US at least, this changed when critics started to question the ethics of the practice, pointing to exactly the what your friend experienced. How can we test people and not even let them know the results?

    Today, prenatal HIV tests are part of a battery of tests routinely offered to pregnant women in the US. In addition, HIV screening of newborns is mandatory in a few states, including New York. This was largely a result of the findings of the clinical trial 076 which found that AZT could reduce mother-to-child transmission of HIV by 2/3.

    There has been much debate about mandatory testing. In any case, here is a timeline of how it evolved in New York.

    1990 Nick Rango, an AIDS policy coordinator in NY, called for routine voluntary counseling and testing of all women of reproductive age.

    Critics claimed that voluntary programs were not effective.

    Commissioner Axelrod called for unblinding screening and mandatory notification to mother.

    1991 Gretchen Buchenholz, exec director of Association to Benefit Children, (foster care agency) wanted to lead lobbying campaign to unblind screening study and start mandatory testing and assured treatment.

    1993 Assemblywoman Nettie Mayersohn wrote Baby AIDS bill to unblind studies and notify parents

    Richard Gottfried, chair of Assembly Health Committee moved to table the bill arguing the need for informed consent rather than mandatory solutions

    1994 "Blue Ribbon panel" recommended mandatory HIV counseling for all pregnant women

    Landmark study of clinical trial 076 published (AZT reduces mother to child transmission by 2/3) . Dr. Lou Cooper, head of NY American Academy of Pediatrics reversed his earlier opposition to counseling pregnant women rather than focusing on newborns.

    Jim Dwyer (Pulitzer prize for AIDS journalism) opposed view that mandatory testing would drive mothers from medical system

    Anna Quindlan, NYT columnist wrote that Baby AIDS bill was coercive and would not prove effective

    1995-6 Increasing political momentum at federal level for mandatory newborn testing.

    1996 New York State Assembly speaker reversed opposition to mandatory testing and helped pass Baby AIDS bill

    1996 Consented Newborn HIV Testing Program was implemented. Required that women in labor must sign written consent form for baby HIV test notification and that in absence of consent or refusal, doctor could order test in emergency situation.

    Assembly woman Nettie Mayerson negotiated agreement over mandatory testing as part of Ryan White, and called for 5 year trial period of voluntary testing before instituting mandatory testing.

    In June Ryan White Act required states to demonstrate one of: 1-50% reduction of AIDS cases from perinatal transmission compared with 1993 2-HIV testing for at least 95% of pregnant women or 3- program of mandatory testing of all newborns whose mothers had not been tested. Failure to meet one of these resulted in loss of funding thru Ryan White

    1997 Baby AIDS bill implemented in February.

    According to state health dept 957 infants identified as positive out of 236,663 tested (Feb - Dec 1997)