Goody, another potential way to criminalize mothers.

Oh, this kind of thing makes me so danged edgy. I mean, I can't imagine someone not wanting to know that they had HIV, but... We don't do this with any other diseases. I mean, where is this going to go from here?

Hey, this is what I work in (I'm part of a nationwide network of projects aiming to eliminate perinatal HIV transmission), so very relevant.

I don't know. I've been around the legal language, the doctors, nurses, and other medical professionals, and other projects for years now, and I do think this is mostly a good idea. No law is flawless, and it could be interpreted wrongly, but that's not its aim.

The reduction of perinatal HIV transmission is one of public health's greatest success stories in the U.S. From the 90s, when there were thousands of babies born with HIV, to now, when there are estimated to be somewhere between 100-300 babies born per year with HIV, increased testing has helped greatly with this dramatic reduction.

The issue that this law is legislating is taking away the risk-based testing. There are still so many states that will only test pregnant women and/or their newborns if the doctor's believe the woman is at risk for HIV. So they can make all sorts of stereotypes: if she's single/unmarried, if she's poor, if she's a minority, etc. The issue with mandatory HIV testing legislation is to take away that ability to stereotype and to make it NORMAL. We want to make HIV testing another test on the battery of tests that a pregnant woman is tested for. We don't want her to feel singled out, like we're judging her. We want everyone to get an HIV test, and one day, maybe no babies will be born with HIV in the U.S.

This is a battle that is being fought in cities and in the most remote areas in the States. Legislation is crucial because practices vary so much from state to state and area to area.

The CDC recommends "opt-out" HIV testing of women and newborns, which means they are fully informed that they will be offered an HIV test, its importance, but they can SAY (don't have to sign in a waiver) "no thanks". I would like to see what they have to say about making HIV testing mandatory (i.e. women cannot opt out), though I'm not sure if they take a position on each state's proposed laws.

This legislation is very similar to the HPV legislation being fought in nearly every state. Many want to make HPV shots mandatory so that no person slips through the cracks. Poor, middle-class, urban, rural - many want each girl to have access to the shots and to essentially normalize it so nobody is being singled out.

I don't know either. I don't like the government forcing things on anyone, medical or otherwise, but I've always thought governments should get involved in the fight against AIDS, especially when they have the kind of power that New Jersey is demonstrating now. Could it turn out to be a good thing? I think maybe.

Why is it only pregnant women and babies they are forcing to get tested? If the goal was eradication of the illness, and trying to eliminate the number of babies who got it, wouldn't it make more sense to test young men and women /before/ they started reproducing? I definitely don't understand why they would only test mothers.

Hi Nina. It's more difficult to legislate "everybody" because everybody gets their health care in different places and at different times (if they get health care at all). It's easier to legislate HIV testing for pregnant women because they are an easier group to target (and I say easier in a relative sense because sooooooo many pregnant women do not have access to prenatal or even postnatal care). But please know there is LOTS of legislation in place, and more trying to be passed in order to make HIV testing mandatory, such as for people entering or leaving prison.

I am also part of a project to increase rapid and routine HIV testing in emergency departments (so anyone who comes in is offered an HIV test and they get their results right there; they don't have to come back). But other than that, I can't offer more knowledge about legislating for routine HIV testing nationwide for everybody.

I just looked up New Jersey's current HIV testing law in regards to pregnant women (we have a brilliant map of all HIV testing laws of the U.S., but I don't want to link to it because my name and contact info is on there). They currently have "opt-in" legislation, which the CDC does not recommend. New Jersey's law currently states that only FOUR weeks from giving birth will a woman be told about an HIV test, and given information about HIV. Then the woman has to sign a form saying "yes, test please" or "no thanks" (those are my words!) making the whole process quite lengthy and not all that effective and wide-reaching. Not all women will be at the doctor's four week's prior to giving birth. And if a woman is HIV positive and doesn't find out until four week's prior to giving birth, she may have already passed it on to her fetus.

I'm all for HIV testing, but the mandatory thing really bugs me, too. Just like I support an HPV vaccine mandate, but with an opt-out clause. Not because I think some people shouldn't get the vaccine, but because you have to provide some leeway, whether we like it or not, to those who are really, really opposed. You're going to get some of that with the HIV testing.

This confuses me, though-- what about pregnant women who don't get prenatal care. Of course everyone should get prenatal care, but facts are facts, and not everyone does. What is the punishment for NOT getting the test? I'd really hate to see pregnant women criminalized due to this legislation. [the article gives me an error when I try to open it. So my apologies if some of this was answered in there.]

You're right, Cara. There should probably always be an opt-out clause. I am interested to know why New Jersey is jumping from opt-in to mandatory HIV testing for pregnant women and newborns. I will talk to some colleagues tomorrow.

I do not see how women could be criminalized for not getting an HIV test while pregnant or after giving birth if they do not go to a clinic, hospital, or other licensed institution. This law will apply to those institutions. It will NOT apply to women. It will NOT be a woman's duty to get an HIV test, it will be the institution's duty to PROVIDE the test.

Sure they can do a mandatory test, right after they provide free comprehensive healthcare for every pregnant woman and her child regardless of their HIV status.

It's so easy to do the testing, not so easy to provide the services that women and children really need.

I also dislike the intrusion. What next, mandatory ultrasounds? vaccinations?. Why is okay for the state to control women this way but not for other facets of reproduction?

It's not.

Sure they can do a mandatory test, right after they provide free comprehensive healthcare for every pregnant woman and her child regardless of their HIV status.

It's so easy to do the testing, not so easy to provide the services that women and children really need.

I also dislike the intrusion. What next, mandatory ultrasounds? vaccinations?. Why is okay for the state to control women this way but not for other facets of reproduction?

It's not.

Sure they can do a mandatory test, right after they provide free comprehensive healthcare for every pregnant woman and her child regardless of their HIV status.

It's so easy to do the testing, not so easy to provide the services that women and children really need.

I also dislike the intrusion. What next, mandatory ultrasounds? vaccinations?. Why is okay for the state to control women this way but not for other facets of reproduction?

It's not.

As far as the newborn screening, I know Michigan and plenty of other states have state-mandated newborn screening regimens that parents can't opt out of, but I'm pretty sure none of these include HIV. My html skills are minimal, but you can see the Michigan info at: http://www.michigan.gov/mdch/0,1607,7-132-2942_4911_4916-64851--,00.html

For most of these disorders, screening offers opportunities for early interventions that have major implications for future prognosis.

While criminalizing a pregnant mother doesn't make much sense, the potential benefits to a newborn who could receive HIV prophylaxis at delivery might simply outweigh a breach of personal autonomy. I'm not saying that's absolutely true, but its certainly a matter for reasonable debate.

Sure they can do a mandatory test, right after they provide free comprehensive healthcare for every pregnant woman and her child regardless of their HIV status.

It's so easy to do the testing, not so easy to provide the services that women and children really need.

I also dislike the intrusion. What next, mandatory ultrasounds? vaccinations?. Why is okay for the state to control women this way but not for other facets of reproduction?

It's not.

As far as the newborn screening, I know Michigan and plenty of other states have state-mandated newborn screening regimens that parents can't opt out of, but I'm pretty sure none of these include HIV. My html skills are minimal, but you can see the Michigan info at: http://www.michigan.gov/mdch/0,1607,7-132-2942_4911_4916-64851--,00.html

For most of these disorders, screening offers opportunities for early interventions that have major implications for future prognosis.

While criminalizing a pregnant mother doesn't make much sense, the potential benefits to a newborn who could receive HIV prophylaxis at delivery might simply outweigh a breach of personal autonomy. I'm not saying that's absolutely true, but its certainly a matter for reasonable debate.

"While criminalizing a pregnant mother doesn't make much sense, the potential benefits to a newborn who could receive HIV prophylaxis at delivery might simply outweigh a breach of personal autonomy."

I disagree. I don't think anything justifies a breach of personal autonomy.

The only time anyone talks about breaching personal autonomy is with pregnant women. No one would say that the benefits of mandatory blood donation might outweigh a breach of personal autonomy. Pregnant women should not have less rights than anyone else.

Testing is not the same as prevention or treatment. Knowledge does not equal power in all cases.

See Blake Scott's book Risky Rhetoric: Aids and the Cultural Practices of HIV Testing for a better explanation.

http://www.amazon.com/Risky-Rhetoric-Cultural-Practices-Testing/dp/0809324946/ref=pd_bbs_sr_1/102-8025536-2214550?ie=UTF8&s=books&qid=1179172644&sr=8-1

Instead, as others point out, testing becomes yet another way to criminalize mothers.

I am really worried about anonymity with any STD testing. Can legislating a mandatory test also become a public database of some kind? I don't know enough about that kind of stuff.

Well, marle, to clarify my position, I would not only like to see routine HIV tests done on pregnant women, but on all people. I think that HIV tests should be a routine part of physical examinations. I think that it would help to create a healthier society and help remove the stigma from HIV testing. I'm in no way advocating making it mandatory, just highly available and like any other routine test (blood pressure, cholesterol . . .). Of course, it wouldn't solve the HIV problem-- prevention would still be a major issue, and those who do not have health care and therefore don't routinely visit the doctor would be left out. We would still have to work on those things. But I do think that it would be a good start.

I disagree. I don't think anything justifies a breach of personal autonomy.

The medical ethics literature includes personal autonomy as one of the greatest principles in health care decisions, but also includes beneficence and non-maleficence as well as social justice. Personal autonomy is broken all the time in healthcare (for entirely ethical reasons). It just has to be for an amazingly good reason.

Legislation from the state is the wrong way to tackle this problem. There's no law on the books that requires women receiving prenatal care to take their prenatal vitamins, but it has become standard because scientific evidence has proven to the medical boards and associations that it should be.

Should HIV testing be a standard of care for pregnant women? Probably. But standards of care should be initiated by medical professionals not by legislators.

I'm pregnant, and thankfully not planning to step one foot into a hospital. Mandatory stuff like this scares the crap out of me. I think it is important that everyone get themselves tested for HIV, and I have been tested numerous times. Thus, I know that I don't have it; yet under this law, they'd force me to be tested again? The affront to personal autonomy is disgusting.

Similarly, in certain states it is mandatory that all newborns receive an eye ointment to prevent gonorrhea and chlamydia infecting the baby during vaginal birth. The fun thing is, my husband's allergic to the active ingredient in it, and I will not be rubbing a potential allergen into my baby's eyes. Yet under certain state law, I'd have to endanger my baby because the vagina is dirty.

I'm pregnant, and thankfully not planning to step one foot into a hospital. Mandatory stuff like this scares the crap out of me. I think it is important that everyone get themselves tested for HIV, and I have been tested numerous times. Thus, I know that I don't have it; yet under this law, they'd force me to be tested again? The affront to personal autonomy is disgusting.

Similarly, in certain states it is mandatory that all newborns receive an eye ointment to prevent gonorrhea and chlamydia infecting the baby during vaginal birth. The fun thing is, my husband's allergic to the active ingredient in it, and I will not be rubbing a potential allergen into my baby's eyes. Yet under certain state law, I'd have to endanger my baby because the vagina is dirty.

"As far as the newborn screening, I know Michigan and plenty of other states have state-mandated newborn screening regimens that parents can't opt out of, but I'm pretty sure none of these include HIV. My html skills are minimal, but you can see the Michigan info at: http://www.michigan.gov/mdch/0,1607,7-132-2942_4911_4916-64851--,00.html

"While criminalizing a pregnant mother doesn't make much sense, the potential benefits to a newborn who could receive HIV prophylaxis at delivery might simply outweigh a breach of personal autonomy."

- GarretSparks

"I disagree. I don't think anything justifies a breach of personal autonomy.

"The only time anyone talks about breaching personal autonomy is with pregnant women. No one would say that the benefits of mandatory blood donation might outweigh a breach of personal autonomy. Pregnant women should not have less rights than anyone else."

- marle

Just curious, what if the state *didn't* mandate testing for pregnant women and *did* mandate testing for newborns (who aren't pregnant women, and whose birth mothers aren't pregnant anymore give or take a few cases of multiple births that take days)?

You. are. missing. the. point.

What good is testing, if (free) treatment does not follow?

"Just curious, what if the state *didn't* mandate testing for pregnant women and *did* mandate testing for newborns"

I'm not a fan of mandated medical care. If it's really important, fund it so it's affordable or free, and have doctors recommend it as standard.

what if the state *didn't* mandate testing for pregnant women and *did* mandate testing for newborns

The problem with that is that testing newborns will only tell you the HIV status of the mother. If the mother is HIV-positive, the infant's bloodstream will be full of HIV antibodies whether or not the infant itself is HIV-positive (mother-infant transmission is high, but by no means certain). Testing the baby would tell you little about the baby's status, and everything about the mother's.

The problem with this is that it is one of (very few) situations where medical care for the mother may not have a great deal of effect on her, but will have a great deal of effect on the fetus. Prophylactic HAART treatment for the mother can, in fact, essentially prevent her child from being born infected with HIV. In this case, there is some sort of colorable justification for mandated testing, but -- on balance -- I think the bodily autonomy interest is more important.

Actually, I might have less of a problem if they did an OraQuick test, which returns the results in less than ten minutes -- if the law created a procedure where the results of the OraQuick test were provided to the mother and otherwise destroyed, I don't know that I'd have as much of a problem with it.

-- ACS

Here is the other side of mandatory testing:

http://www.aclu.org/hiv/testing/11535pub20010101.html

I had my son at home with a midwife, no testing and no problems. No antibiotic ointments or any other shots of any kind.

Sassy, thanks for the ACLU link. They lay out the worst case scenerio....

"Might a compelled testing program for pregnant women be a good idea? The experiences of one woman in New Jersey may suggest that it is not. The woman, participating in a state-supported prenatal testing program, was counseled about HIV risks for herself and her fetus but, after thinking about whether she wanted to be tested or not, turned down the opportunity for testing. Her hospital continued to "offer" the test, and, despite her insistent refusals, went ahead and tested her blood without her consent. She learned she was HIV-positive. At first, she tried to take AZT, but the side effects were intolerable. She chose to stop taking the drugs in the hopes that she would conserve her strength to carry on with her pregnancy. For that, the hospital considered her an abusive mother and called the state's child welfare services. When she continued to refuse AZT treatment during delivery -- willing to take the one-in-four risk of infection over the unknown risks of high doses of a potentially toxic drug to herself and her newborn -- the hospital obtained a court order for guardianship of her infant. They took away her baby, took away her right to decide what's good for her child, and took control of the child's treatment by injecting her with high doses of AZT. They then turned the child over to foster care."

Not the best choice for herself or her baby, but it should always be a woman's choice.

Sassy, thanks for the ACLU link. They lay out the worst case scenerio....

"Might a compelled testing program for pregnant women be a good idea? The experiences of one woman in New Jersey may suggest that it is not. The woman, participating in a state-supported prenatal testing program, was counseled about HIV risks for herself and her fetus but, after thinking about whether she wanted to be tested or not, turned down the opportunity for testing. Her hospital continued to "offer" the test, and, despite her insistent refusals, went ahead and tested her blood without her consent. She learned she was HIV-positive. At first, she tried to take AZT, but the side effects were intolerable. She chose to stop taking the drugs in the hopes that she would conserve her strength to carry on with her pregnancy. For that, the hospital considered her an abusive mother and called the state's child welfare services. When she continued to refuse AZT treatment during delivery -- willing to take the one-in-four risk of infection over the unknown risks of high doses of a potentially toxic drug to herself and her newborn -- the hospital obtained a court order for guardianship of her infant. They took away her baby, took away her right to decide what's good for her child, and took control of the child's treatment by injecting her with high doses of AZT. They then turned the child over to foster care."

Not the best choice for herself or her baby, but it should always be a woman's choice.

hey

good point about the neo-natal testing.

The debate about how testing the newborn amounted to defacto testing of the mom raged in New York several years ago, where HIV testing was added to the standard newborn testing which screens for multiple metabolic disorders, many of which are fatal or severely disabling if not treated within the first few months of life. From the baby's perspective, HIV is kinda like that; getting anti-retroviral therapy in the first months of life drastically reduces the risk that the baby will end up HIV positive, even if there was no therapy during pregnancy. The state came down on the side (and I believe that) once that child is out, the duty to protect his/her health by detection trumps any potential wish the mom has to protect herself from knowing her own status.

Since prenatal ARV therapy and therapy during delivery are the best way to prevent the vertical transmission, the debate over the madatory testing can be framed the same way. However, by happening during preganancy, it lands you straight in the 'whose body its it' debate that characterizes all the sticky questions about reproductive rights. That story above is horrifying from the perspective of the woman; and the consequences too severe. But it takes that debate right to the line where you go from one patient who can make decisions for herself to where there are two, one of whom cannot speak for itself. Docs walk that line allthe time in treating pregnant women; especially those who provide abortions constantly have to move between thinking of themselves as having one or two patients before them, and which is more important, as decided by the mom. By this I mean, I think the woman has autonomy over her body and the pregnancy; however, some women themselves will want to make decisions that endanger themselves in the interests of the baby who they consider more important than their own lives. For example, a woman with chronic heart failure who wants a baby; the preganancy could realistically kill her, but she wants to keep it, and I have to go with her decision and do my best to keep both her and the baby well. The docs in the NJ case obviously lost sight of this question, or rather, decided that while the woman was delivering, the baby was the primary patient - in my opinion the wrong decision, especially given that giving ARV to the baby after delivery without moms consent was a medically and legally viable option with a comparable outcome.

We test for alot of things in pregnancy; other STDS, diabetes, markers for Downs syndrome, UTIs, cervical cancer via Pap smear; none of them require specific consents - even the other STDs -, though of course if a woman decided to refuse any of them she could. HIV should be treated like that - one of the tests that we say 'hey we're taking blood/a smear/urine today to test for x/y/z, as part of your standard prenatal care, do you have any questions?' Sure, HIV carries a lot af baggage, but so do a bunch of the other things we do - just ask any woman who gets diagnosed with diabetes or any other serious disease in pregnancy. A woman should be able to refuse it if she wants, but I believe that a large percentage of refusals stem from the framing of HIV as something scary, seperate and with huge consequences, rather than another test for another disease.

The story above is, of course, a travesty for the woman, but please remember that it is an extreme worst case scenario - good for the slippery slope debate, but by no means the common story. Requiring the HIV test with an opt out should not, and rarely will, lead to this. Hopefully future patients in this scenario will have better docs who can avoid that kind of cnfrontational, controversial care.