At my hospital (I'm a med student), every pregnant woman goes through routine screening for a number of diseases: rubella, hepatitis B, gonorrhea, chlamydia, syphilis, group B strep, and yes... HIV.

These are fairly important pieces of medical information. Not testing would be a disservice both to the mother and the child.

If a mother turns out to be HIV+, there are steps we can do to reduce the likelihood of vertical transmission. A c-section, for instance, reduces the risk considerably over vaginal delivery. For this decision to be made, we have to know the mother's HIV status.

Then there is the mother's health as well. Like any chronic condition, HIV is better treated sooner rather than later.

As far as privacy goes, HIPAA has that covered. Believe me... HIPAA is stressed so heavily that it is damn near a religion around here. Any provider who carelessly discloses the HIV status of a patient likely gets fired.

I understand patients should have ultimate control over their health decisions, and they can certainly opt out of any screening. But some tests are routine at any hospital: glucose and A1C checks for diabetics... plasma electrophoerisis for sickle cell patients.. and screens for important infectious diseases for mothers. All of these screens have demonstratable health benefits, backed up by research.

NOT screening every mother for HIV and other diseases is a lot less respectful to her or her baby, than making the screenings only at the patient's request.

Forbidden:

1. HIPAA is damn near useless and we both know it. Many people's medical info is stolen and sold by health care providers themselves and any law enforcement joe can request it for any reason. The best way to protect info is not to have it.

2.Why do you test? Is treatment free once you do? If not, what good does it do?

3. When you say the info is important, what you mean is that you have been trained to want that info. You do not necessarily mean that you personally as a health care provider will use it to get long term care and treatment. You just want to know.

4. Would you suggest doing HIV tests on every man who enters your hospital and might be sexually active as a routine? If not, you're buying into misogynist over-medicalization of women's bodies, pure and simple.

I think that its really important to remember that HIV is treated differently as an infectious disease primarily because of the vocal and committed activism of the AIDS/HIV advocacy communities and that this comes out of a history of HIV hysteria and prejudice. Yes, in the 1980's there was talk of "rounding up" HIV positive persons and putting them into camps--even as late as the 90's one of the current front-runners, Mike Huckabee, reiterated this heinous idea!!!

But, HIV is an infectious disease and other infectious diseases, such as TB and syphillus have very strict medical procedures in terms of testing and notification policies for the benefit of public health--HIV does not because activist early on saw how out of control homophobia and racism could turn HIV notification mandates into marching papers to camps--this dystopic view and concern came from a fear born by real and dangerous political policy makers (not medical professionals)!!!

So, as the med student stated, it is part of standard care to test for a variety of diseases/conditions during pregnancy because that is just that--PART OF STANDARD CARE. HIV has been politicized, primarily by the Right at first, but the activist Left (of which I consider myself a part of) has also played its part in just such politicization. Why is it that in the collective imagination HIV is different from Gestational Diabetes, for example? Because of the horrors, imagined or real, that HIV patients have been subject to over the past three decades. HIV should not be politicized, it should be dealt with (without judgment) as a health-care issue. Is it more or less patriarchal to test pregnant women for anemia than for HIV? Both pose serious threats to women and to infants. Yes, the idea that people do not have complete control over the tests that are administered can seem anti-feminist since so much of the feminist movement has to do with bodily integrity and the human rights of women, yet, before one can have any procedure or undergo treatment there are STANDARDS OF CARE one must proceed with to undergo care--a blood pressure test, getting weighed, medical history taken (and all that to see if one has strep throat). That's the thing about medicine--we don't get to pick and choose STANDARDS OF CARE in our individual cases because doctors and nurses (and nurse practioners) need as much information to proceed honoring their oath to do no harm. Men and women, at many points in our lives are dependent upon the good graces and compassion of other human beings and we have to trust that as we individually gain out areas of expertise we respect that. I teach, if my students said in my world lit class that they didn't want to learn anything about Chinese Literature, as a teacher would I honor that and still consider the class a "world Lit class?" No, I have that area of expertise and I know that to truly care for my students as learners of a liberal education the class must present some Chinese Literature and not just focus on the West--okay, the metaphor is a stretch, but what I mean to say is that we are all dependent upon one another and to confuse bodily integrity with the right to determine individual standards of care is incorrect. Medical practice needs those tests to serve the patient, its up to our political/social policy makers to make sure that that test does not result in the loss of healthcare coverage, job loss, or discrimination of any kind as a result of HIV status--these are different areas. Respect the standards of care as well intentioned, just like the tests for gestational diabetes, as part of medical practice, not a deliberate attempt to harm pregnant women socially. Vote vote vote for comprehensive health policies--speak out for the reproductive rights of women, but don't allow the politicization of science and medicine.

This is the main problem I have with mandatory testing like this. I live in NY and had my son at home with a certified midwife. I could opt out of the HIV testing, but had I transfered into a hospital without having been tested, I would not have been allowed to breastfeed my baby. I had been with the same partner for (at that time) for over 7 years. I am pregnant again, same man, now over 14 years, and will need to be tested again. Neither of us have been with other partners (and yes, I know this for a fact) and I have been routinely tested for STDs at my yearly exams. I find this sort of mandated invasion exactly that - an invasion. We ultimately ought to have control of our own bodies and health care choices. I do not have the routine tests done during pregnancy because I know that I will not abort or love a baby any less if there is anything wrong with him/her. I don't see how this is any different. Even if my baby had HIV, I'm not sure how I would proceed. If I chose not to treat the baby with the (nasty) drugs available, that should be my right - just like I can choose to breastfeed, circumcise, vaccinate, co-sleep, send to daycare, etc. or not. Not everyone may agree with my choices, but they are ultimately mine. It is up to me to choose what I feel is best for my child and myself.

thealogian - we cannot wish away the political reality. And your Standard of care line would imply forthcoming treatment. Again, that is simply not the case. Knowlegde (without treatment) is not power, at least not for the patient. But it IS power OVER the patient.

Remember that standards of care are created by people and usually not by feminists. They have more to do with preventing lawsuit than with health care.

I want one proponent of this imposed test (just one) to tell me that these women and their babies will get treatment for HIV (free and accessible) and I will back off. If they will not, then the tests are merely slut shaming and attempts to take babies away from mothers as the example in the initial post.

This is a really complicated issue. If tests were only given at the mother's request, then there's a good chance a lot of expecting mothers wouldn't know to ask for it. Personally, I think it would be a good idea to expand HIV testing to both men and women (not just those that are pregnant). Like any other medical test, patients should be informed about what they are being tested for.
HIV is widespread and the only way to step up prevention is to do more testing. I am not suggesting that individuals with HIV need to be targetted for any kind of discrimination, however it is possible that more widespread testing would allow individuals know about their condition in earlier stages, thus making it easier to treat the condition and stop the spread.
To just test pregnant women is neglecting a substantial portion of the equation. Accordng to the CDC website, men account for more than twice the HIV cases than women do, and about 1/4 of those with it do not know they have it.

Lilah, thanks for your story. Medical professionals refuse to believe that we can (or should) make our own choices, but you prove beautifully that we can and must.

I would be ok with offering women the choice. Tell her the risks and benefits of testing and let her decide what is best for her and her baby.

I have heard too many horror stories of children being snatched from their parents when the parents decide that mainstream medicine isn't the route for them.

mirm: 1. I'm not sure what hospitals you've been in, but if random people can walk in and steal medical information... maybe that hospital's security department needs an overhaul. At our place, even using EMR using someone else's login is grounds for suspension. And as far as the legalities go... the thought of cops snooping without a warrant is ridiculous. (but then again, in George Bush's America, anything goes, so you may have a point.)

2. Why do we test? As I said, there are things that can be done if we have a positive test. C-sections cut down on the risk of transmission of some diseases, including HIV. Also, reducing the mother's viral load with anti-retrovirals lessens the risk for the fetus. These steps obviously won't be taken if we don't know the mom is HIV+.

3. Um... okay. You're right. We are just snoopers and peeping toms, sticking our nose where it doesn't belong... that's the only reason why we ask about your HIV status. Seriously, is that what you really think? It sounds like you've had some bad experiences with judgmental doctors. If that is the case, my apologies, but don't judge an entire profession based on a couple bad apples.

4. If a man is sexually active, you're damn straight that I'm regularly going to test him for HIV, gonorrhea, and chlamydia.

As thealogian says, it's all about "standard of care." I know HIV+ patients were discriminated against in the 80s and early 90s, and I understand why people are still hypersensitive about HIV tests as opposed to tests for other diseases. But not only is HIV a serious condition -- but there are also things we can do these days to manage it, and reduce the risk of transmission. THAT is why we want to know.

I don't know if this is true or not but it came up during a conversation once and if it is then it would definitely be important in this case...

Someone once told me that your insurance can suddenly decide to kick you off (of course, they wait until you have something huge and expensive that you need covered) if they see that you've had HIV tests or other tests of that sort before. Something about a risky behavior clause (needing an HIV test would imply that you have unprotected sex, etc). Anyway, the point is, does anyone know if this is true?

I'm hesitant to jump into this because I feel that I'm not well informed enough to develop a solid opinion, yet. The issue, as it seems to me, is about the standard of care that has been mentioned. ForbiddenComma seems to be advocating that health professionals need as much information as possible. That seems reasonable to me and surely necessary for doctors being able to offer the very best medical advice and services possible. If that's the case, as a feminist, I like the HIV testing for pregnant women. These women deserve the best care possible and know all of their options. On top of that, is it painful, inconvenient or expensive to have that test? Although Lilah's story about needing to be tested twice does seem inconvenient, should doctors been seen as slut shaming or as honestly wanting all medical information possible? I'm not sure and it's interesting to think about the two sides.

It gets complicated when that medical information is used either against the patient or at all outside of the doctor/patient relationship. In the case hte NJ woman who was deemed an "unfit" mother based on her HIV status, that's clearly wrong and ridiculous.

Is it possible to separate the two issues? The first issue being mandated testing and the second issue being the use of the results of those mandated tests? I don't know if they can be, it's a genuine question.

newslang, i'd hope that's not true. being screened for HIV means i'm NOT risky because i'm proactive about protecting my health. i've never had unprotected sex with someone who i didn't know his HIV status, and i still got tested. careful healthy people are the people insurance companies should want to keep.

i grew up and live in NJ, and i'm conflicted about this too. NJ is home to many pharmaceutical companies, so i'm always suspicious that any healthcare legislation might be made to benefit these giant taxpayers and employers more than our residents. on the other hand, i believe we have a trusted and respected healthcare community in the state.

i guess what i'm saying is, what others have said. i would trust the mandatory-ness if it was a highly recommended medical procedure rather than on-the-books law. especially since doctors and hospitals are already highly compromising their care because of threat of lawsuits and legislation.

Newslang,
That isn't true. If you have been without insurance and test positive it could be a pre-existing condition, but nothing can happen to you for having the test. Often there are many places to get tested for free and there is no report the insurance companies at all.

I have worked for an HIV Clinic, non-profit youth program for HIV/AIDS children and adolescents, and speak nationally with HIV positive people about prevention and compassion...so this issue really hits home.

I think that the majority of the people I work with living with HIV would be in favor of mandatory testing, and yes, there are many options out there for getting funding for meds. It isn't always easy, but that is why most (if not all) HIV patients have case workers that intricately know the ins and outs of federal funding. I am not a case worker, but I am fairly certain that if you are under 18 you are provided the meds for free. After you turn 18 things are a little trickier.

Also, in this country, the mother-to-child spread of HIV has been lowered to an extremely low rate because of the precautions you can take once status is shown. Mother to child transmission is anywhere from 25%-50% without precautions and less than 2% with medications/c-sections/etc. It is one of the easiest ways to stop the spread of HIV.

And, the CDC did recommend last year that EVERYONE (male and female) be tested as part of a routine physical. The test takes 20 minutes and is very cost-effective so there is little reason not to. The CDC also estimates that of there are about 250,000-500,000 people out there who don't know their status and are actively spreading the disease and not getting the care they need. This leads me to a point I tell everyone I know...go get tested.

Oh, and HIPAA definitely is not a joke where I come from. I couldn't even get the phone number for a women to drop off Christmas presents that we had sponsored. We had to wait for her case worker to come back because he was the only one with access outside of her doctor who was on vacation. It may not be the case everywhere, but there is no information sharing in our clinic.

I know HIV+ patients were discriminated against in the 80s and early 90s, and I understand why people are still hypersensitive about HIV tests as opposed to tests for other diseases. But not only is HIV a serious condition -- but there are also things we can do these days to manage it, and reduce the risk of transmission. THAT is why we want to know.

I have to say, it is incredibly naive to think that HIV+ patients are not discriminated against anymore. I am guessing you are in a large, metropolitan area. In smaller towns and rural areas, your health isn't so private, HIPPA or no. When your neighbor's kid's friend is the nurse or the med tech or the doctor, your neighbor may very well know your HIV status. Those things aren't kept quiet long in small towns because the fear is still there (I still here a lot of crap like: "I can't get AIDS, I ain't no fag!") So, while you may be surrounded by dedicated, caring, informed, and ethical healthcare professionals, not all of us are as lucky.

Also, just because you can manage HIV doesn't mean you have the RIGHT to test for it (nor should the patient be obligated to tell you if they have it). You job should be to provide the patient with the facts and talk it over with them, but in the patient should ALWAYS make that decision, pregnant or not. Period.

If a man is sexually active, you're damn straight that I'm regularly going to test him for HIV, gonorrhea, and chlamydia.

The key difference is that is not MANDATORY for a man to be tested for any of those things. You can highly recommend he be tested, but ultimately, the decision is his (with no repercussions, i.e. having his child taken away for not testing). That's all we want for women, pregnant and non-pregnant alike.

(when I say "you" and "they," I mean that in a broad sense, not a personal)

Last question, why in world should I be FORCED to pay for a test I do not need (I know I am not HIV+, why isn't my word good enough)?

HIV is widespread and the only way to step up prevention is to do more testing.

I would generally agree with this statement, but AFAIK, it takes patients up to (depending on who you talk to) 3-12 months to seroconvert so that they test positive if they are HIV positive (somewhere on my blog, I blogged about this and Jay, whom you may know from either feministe or pandagon set me straight).

While people are warned about this, I cannot help but think that if you have a bunch of people tested, you'll end up having more than a few people for whom the warning didn't sink in and they'll be going around thinking they're negative when they are really positive and hence will end up spreading the disease.

I'd say that we really do need to still put some money into better testing before we start making it so widespread.

"That's all we want for women, pregnant and non-pregnant alike."

That should say:

That's all I want..

I don't want to speak for any other feminists as we have varied and interesting opinions on this subject.

OT but Re: HIPAA (I think) ... the daycare to which my fiancee sends her daughter once decided that she (my soon-to-be daughter) had pinkeye. My fiancee had to take off work early (I live in another state), etc. (which is a whole 'nother topic of conversation -- supporting single parents: where are the so-called pro-life people on this?) and take her daughter to the doctor.

The doctor said "this kid doesn't have pinkeye: it's just -- and obviously so -- irritation from the cold dry air". The doctor wrote a note, but the next morning the daycare people decided they didn't believe the doctor's note, called the doctor and started asking questions.

Was the doctor really able to divulge things under HIPAA? AFAIC, the doctor said the kid wasn't contagious: anything else, unless it was directly relevent to the ability of the daycare provider to act in loco parentis, was none of their darned beeswax!

I guess whomever answered the phones at the doctor's office handled it discretely and diplomatically. If I were the doctor (or her receptionist) I would be screeming at the daycare people: "what the #@$% is wrong with you? isn't our note enough!?!?"

And, the CDC did recommend last year that EVERYONE (male and female) be tested as part of a routine physical.

I agree with the CDC. However, recommending it as part of a routine physical and requiring for all pregnant mothers is completely different. Recommending it still leaves the decision upto the patient. Not so with madatory testing, even with an opt-out (as someone pointed out, women are often pressured into testing - some at the threat of losing their new baby).

I also think cost HAS to be part of this discussion as well. The cost of having a child, even with insurance, can be astronomical for some. And, until that changes, I have a problem with adding on more mandatory testing.

Forbidden:

http://www.msnbc.msn.com/id/17048911/

“Medical identity theft, on the rise, can threaten lives as well as wallets� Information is not so hard to get.

My medical history is so boring as to be laughable, so nope, not about me. But nice attempt at misdirection.

Your snooping is well-intentioned. You want to provide care, but information about sero-status does not guarantee treatment. For care, you also need time, money, and patient cooperation, none of which come magically with an HIV+ status. While you may laugh at my comments about medical professionals just wanting to know, when you cannot personally assure treatment after the test, what else would you call it?

There are things you can do, when you know a pregnant patient is HIV+, you may not have the wherewithal (insurance coverage, payment, patient permission) to actually do them. Thus, the test itself is not the answer. Those anti-retrovirals don’t come cheap do they? And they are not easy to take either are they? You cannot say that knowledge about serostatus will get them to a patient. These decisions must be made by the patient, not by the system.

You can mock my attitudes and call me paranoid, but I don’t see you actually addressing my points.

as someone who used to work in a doctor's office which dealt with pain management and addiction, i'm befuddled by all the ragging on hipaa that's going around.

i mean, as i understand it (and i'm no doctor, but i did do my share of filing and storage of medical data), medical information cannot be obtained without the patient's consent unless there is a warrant, subpoena, or similar legal document demanding said information.

in other words, your medical info is about as safe as (perhaps more safe than) your house. a police officer cannot just walk into a doctor's office and say "i'm a cop, gimme the files."

further, in a small town, regardless of how neighborly, if a medical professional were to disclose hipaa-protected information, s/he would be liable to face severe consequences, including that the entire facility would be open to censure.

while some people hold backward views, not all of them live in small towns. further, while news tends to get around small towns, that doesn't mean that nurses and doctors have any less grasp of their professional responsibilities and legal obligations.

if you, or anyone you know, has experienced a situation in which medical information has been shared without consent or legal mandate, i implore you to pursue legal action. without proper follow up, the law means nothing.

hipaa was created, in part, to allow for a higher standard of treatment while allowing individuals to maintain their privacy. if that privacy is violated, people (just look at these comments) will doubt the security of medical professionals, make unwise decisions (refusing to get tested for fear of stolen or shared information) and, well, we might as well just throw away the idea of getting tested for infectious disease altogether.

ethics are all fine and good, but there is a powerful legal structure to support your privacy so you don't have to rely on individuals "ethics."

really.

oh, and DAS, when i was working at that office, i've got to say i behaved much more like you than like your doctor :). then again, i was instructed to not even disclose what kind of doctor's office we were, so my skills at being vague and opaque were tremendous (though sometimes a bit rude).

Dear Vanessa,

I'm a bit concerned that the original post here is a bit disingenuous. The ACLU page that you link to recounts the story of the New Jersey woman and the newborn as well. You state that the baby ended up being HIV negative, which makes it sound like the child's status was always negative. What you don't state is that in the ACLU story it says that the baby was given AZT and that there's no way to know whether or not the child was HIV positive or not before the course of AZT treatment. It is quite possible that the state stepping in saved a life here. The original post here makes it sound like the AZT treatment was in vain when no one will ever know if it was or not.

further, in a small town, regardless of how neighborly, if a medical professional were to disclose hipaa-protected information, s/he would be liable to face severe consequences, including that the entire facility would be open to censure.

while some people hold backward views, not all of them live in small towns. further, while news tends to get around small towns, that doesn't mean that nurses and doctors have any less grasp of their professional responsibilities and legal obligations.

Wow, you are putting a lot of words in my mouth. I never said that the only people that hold backwards views live in small towns or that healthcare professionals in smaller areas have any less of a grasp of their professional responsibilities. If I believed that, I certainly wouldn't be living in a rural community. I am saying that it occurs fairly regularly in small areas (maybe I just notice it more often because it is a smaller area or because I work in healthcare).

When you talk about everyone being professional at all times or suffering consequences, you are talking about ideals, not reality.
Some healthcare professionals violate HIPPA and a good portion of those are never held accountable for it. That's the reality. It happens whether it's ethical or not or whether there are consequences or not.

I really don't understand the entire problem here. HIV has a different political status because it is an STD and because it was originally identified with homosexuality. It is controversial, much like the HPV vaccine, but feminists are usually all for the HPV vaccine and prevention of cervical cancer. I don't understand the difference here. HIV tests cost next to nothing, which is why you can get them free in almost any town in the US. Also, unlike testing in physicals, finding that a pregnant mother is HIV + would result greatly reducing her baby's chances of having the disease. The chance would only be about 3%. That child would then not have to face discrimination, meds that can make you sick, and incredible challenges when they reach the onset of sexuality. Having worked with HIV+ children and adolescents, many of whom acquired HIV at birth, I am sure that every one of them would have been grateful if their mothers had been tested. It is true that HIV patients in the US are living longer than ever before and quality of life is usually very high, but you still face meds every day, discrimination, difficulty with romantic relationships, and many other problems. Why wouldn't you want to prevent this for your child? It is similar to the HPV vaccine...if you can prevent cervical cancer for your child, why wouldn't you?

the ACLU story it says that the baby was given AZT and that there's no way to know whether or not the child was HIV positive or not before the course of AZT treatment.

There is no cure for HIV. Newborns are treated with AZT to prevent the transmission of the HIV virus from the mother (through the womb, during labor, or through breastmilk). If the baby was negative after treatment, then s/he was negative before treatment. Babies that are already HIV+ before getting AZT, will still be HIV+.

Hope - the problem is that testing doesn't mean treatment.

Any mandates for women only are bad.

Choice is good for women.

mirm: There are things you can do, when you know a pregnant patient is HIV+, you may not have the wherewithal (insurance coverage, payment, patient permission) to actually do them. Thus, the test itself is not the answer. Those anti-retrovirals don’t come cheap do they?

If your issue is the lack of socialized care in this country, or the cost of medications, then that is a valid issue... but it is entirely seperate from the issue of whether or not to test to begin with.

Or are you suggesting that because some people cannot afford the antiretrovirals.. then we should not test anyone? I'm not sure your argument is entirely coherent.

I also think if testing was mandated or common few women would consider asking for HIV testing during pregnancy. I think it is important because HIV is a serious disease and the prenatal care provider would need to know an individuals HIV status to make sure everything went well during the pregnancy.

It actually scares me that people would consider not getting tested due to concerns about the level of care or treatment they would recieve as an HIV positive patient. Fear shouldn't overrule being safe and doing what's best for your child and your own well being. I think even if you have been with the same partner for a number of years, can you really be positive about your partner's sex life? No.

I also think couples should have to be tested for HIV and other STD before a woman goes on hormonal birth control (I mean assuming they are not going to be using condoms and the woman is not single) or that it should at least be suggested.

The key difference is that is not MANDATORY for a man to be tested for any of those things. You can highly recommend he be tested, but ultimately, the decision is his (with no repercussions, i.e. having his child taken away for not testing). That's all we want for women, pregnant and non-pregnant alike.

Shelby: If you are correct and the tests are MANDATORY, then indeed that is reprehensible. A patient should always have the option of opting out, assuming they are legally competent to make their own medical decisions. After all, it is their own body and their own health.

While HIV screening should be routine, everyone at my place who gets the test has it explained to them and they have a form to sign explaining the test and clearly stating they have the right to refuse. That seems about right to me.

Again -not my issue of socialized medicine or otherwise.

Of course, it's coherent. Why do the test, if there is no useful end result?

If the medical industry was serious about treating HIV and preventing natal transmission, they would devise a treatment plan BEFORE a testing plan.

Explain to me why we should FORCE tests on people who can do nothing about the test results? That seems incoherent at best, and insidious at worst.

You're also ignoring the patient permission part. I know you cannot understand it (med student), but it is their bodies we're talking about. No-one should be able to force any kind of medical treatment, testing or otherwise.

oh, and "not test anyone" is disingenuous, when we're talking about mandating tests for all pregnant women.

redhead - keep your draconian rules to yourself. my goodness!

As hopeisawakingdream said above, it matters that the number of MTCTs has diminished massively over the last many years in the US and Canada, for all the reasons s/he identifies - it is no longer possible in the US, for example, to do large- (or even small-) studies of children who have received HIV in this way, since there simply aren't enough of them.

If the education and treatment programmes have been so effective without requiring mandatory testing, what's the legislative requirement for the testing doing other than making advocates of women's rights angry and frustrated?

I haven't read all these responses, but this is rebuttal for Forbidden. HIPAA is laughable. Anyone who wants any medical information just has to show up in a white coat with a clipboard. Most of the time someone (MD, nurse, records keeper) will let one look at a chart, even without any kind of identification. The bigger the hospital, the more likely this is. And if it's a teaching hospital (where you are more likely to find vulnerable populations)? Piece of cake. Doesn't matter where you are in the US, either.

This is my first time posting but I had to jump in because my mother is a physician specializing in HIV/AIDS. She has run a program in Atlanta that has drastically reduced mother-to-infant transmissions of HIV and works almost exclusively with poor, minority patients. Because of her work, HIV policy and politics has always been an interest of mine.

Anyway, the point of testing pregnant women isn't "slut shaming" - please, claims like that only give credence to the ridiculous "hysterical feminist" stereotype and if it were true, the tests would be required for all women, pregnant or not. Instead, the objective is to ensure another person doesn't get HIV. There are numerous proven strategies to prevent transmission, including C-Sections and/or nevirapine before/during labor. These methods WORK and we are so fucking fortunate that they are available. It makes me sick to imagine how women in other countries would do anything to have the resources to prevent their babies from contracting HIV. And yet we have those resources and are complaining about the "medical establishment" invading our privacy. Talk about a "first-world" problem.

Wow Panda - way to troll.

Those prevention strategies are wonderful.

Mandatory testing is something else.

Do you understand the difference?

I'm through here, but you might all read Blake Scott:

J. Blake Scott
THE PUBLIC POLICY DEBATE OVER NEWBORN HIV
TESTING: A CASE STUDY OF THE KNOWLEDGE
ENTHYMEME
Abstract. This essay analyzes the web of persuasion named the "knowledge
enthymeme " in the public policy debate over mandatory newborn HIV
testing in the United States and especially New York. Bringing together
classical rhetorical theory and Foucault's theory of the knowledge-power
loop, the essay explains how the conceptual/argumentative frame of the
knowledge enthymeme helped shape the knowledge-power relations of
mandatory newborn testing in dangerous ways. Ultimately, the knowledge
enthymeme blocked more responsive approaches to testing by exaggerating
the beneficial effects of testing and its knowledge, ignoring the contingenices
of this knowledge, and bypassing the "situated knowledges " of the women
it targets.

The objection is not to strongly recommending the tests or making them readily available. The objection is to requiring HIV tests or making them unreasonably difficult to refuse. HIV tests are a good thing, but they are not an unmitigated good in all circumstances. We can and should encourage people to get tested, but we have to let people make their own decisions.

What I find especially disturbing though is that this _isn't_ just a matter of ideal medical practice vs individual freedom. I'd object as strenuously to mandatory testing for other diseases and conditions, but gestational diabetes or multiple sclerosis testing are not on the legislative calendar.

Mirm, I'm not trolling. I've read this site for months but feel compelled to comment because I have very strong feelings on the subject, as I mentioned in my post.

FORCING people to do something at a hospital is certainly an ethically murky area and a reason to examine the issue more closely. But your suggestion that mandatory testing of pregnant women is slut shaming and not part of a prevention strategy is stupid. You could argue that pregnant women should be offered testing, encouraged to be tested, told about why testing is important, but not required to have a test. That's fine, whatever. I'm not going to argue that mandatory testing is the answer and shut out all other opinions. But I've seen first-hand the success that prenatal testing has in avoiding new HIV cases, and I've also seen women who have refused testing (it's not mandatory where I am from) either because of their own ignorance or because they were in denial about their own status, and then have HIV positive babies. It does no good to test the infant AFTER it's born (unless, as you said, they are providing free treatment) but testing pregnant women and to prevent mother to infant transmission, I think, should be compulsory both as a public health measure, and as sound OB practice.

ShanaLyns - My apologies if you felt my post was disingenuous, it's a complex issue and there's a lot of information in the ACLU piece to cover; but my intention wasn't to imply one thing or the other.

Ok perhaps I shouldn't have called Mirm's suggestion "stupid". I do think it is misinformed and willfully ignorant.

I am trying to be civil as I'm new around here...

mirm

Um...except that in many cases, testing postitive DOES mean treatment. Especially if you are under 18. Like I said before, I work in an HIV clinic and each patient (many of whom can't pay for their meds at about $1800/month) does get meds every month. We employ many people whose sole job is to ensure this happens, mostly through federal grants. In addition, there are also grants that pay for housing costs, ect. for HIV + patients. I know this isn't the case everywhere, but having worked in various states with different HIV programs, once you are referred to a clinic as HIV+, there are resources available.

No one has yet to address how this is different from wanting all girls vaccinated for HPV. If you can prevent cervical cancer, why not? If you can prevent mother-to-child transmission of HIV, why not? This isn't a "slut shaming" tactic or removing the choice from mother (they can opt-out you know). It is an important step for the treatment and prevention of HIV. Because of the low cost of testing I am also quite sure that it will become a part of routine physicals until the spread is curbed (it is on the rise...check the recent CDC reports).

mirm- please point me to any comment where I said that HIV testing should be "mandatory."

In fact, I specifically called such a policy reprehensible.

Please don't get carried away, and please don't put words in the mouths of others. Especially when I had written the exact opposite thing.

Anyway, the point of testing pregnant women isn't "slut shaming" - please, claims like that only give credence to the ridiculous "hysterical feminist" stereotype and if it were true, the tests would be required for all women, pregnant or not. Instead, the objective is to ensure another person doesn't get HIV. There are numerous proven strategies to prevent transmission, including C-Sections and/or nevirapine before/during labor.

EXACTLY - people should read the above three times before hyperventilating.

Forbidden - the original post is ABOUT mandatory testing.

I'm not hyperventilating - I'm providing sources and arguing.

Whenever someone argues from a counter-intuitive position, accusations come out.

Hope - the New Jersey program is not the same as your mother's Atlanta program. There is no evidence that treatment will be provided. Thus, the testing may NOT keep people from acquiring HIV. Are you following? That means there has to be another reason for mandatory (yes, mandatory) testing. Dare I say, slut-shaming?

My mother's Atlanta program? I'm not following...I did, however, work with two 15 yo's from NJ who were positive and both of them were on federally subsidized meds.

Federal grants (ie...for all states) provide the majority of funding. I find it hard to believe, and quite ridiculous, that someone in New Jersey hasn't figured it out yet. Yes, there have been some waiting lists and those waiting lists are horrible (I spent a good amount of time lobbying for money to end the lists), but even these lists have been reduced recently. You are arguing with people on the front lines of fighting this disease. I have seen first hand how difficult it is to fight this disease. But early diagnosis significantly improves quality and length of life. And yes, in the case of testing the mother...testing DOES, in fact, prevent the child from acquiring HIV. There are resources available for treatment.

From the Kaiser report on federal funding for HIV/AIDS patients 2007:

The Domestic HIV/AIDS Budget
Care: The largest component of federal funding for HIV/AIDS
is health care for people living with HIV/AIDS in the U.S.,
which totals $13.2 billion in the FY 2007 budget request (58%
of the total budget request and 70% of the domestic share).
This represents an increase of 7% over FY 2006. Most care
funding is for Medicaid and Medicare; these mandatory
programs also account for almost all of the increase in the
care budget. As part of the President’s new Domestic
HIV/AIDS Initiative, the Ryan White CARE Act, the largest
discretionary HIV/AIDS grant program, is slated to receive an
additional $95 million, $70 million of which will be for
addressing the ongoing issue of state waiting lists for HIV
medications and $25 million for expanding outreach efforts
through new HIV community action grants to faith and
community-based organizations, and for technical assistance.
Cash and Housing Assistance: Cash and housing assistance
represent $2.1 billion, or 9% of the HIV/AIDS budget (11% of
domestic programs). Overall funding for these programs
increases by 2% in the request, which includes a slight
increase for the Housing Opportunities.

Got you confused w/ another commenter.

How does the testing itself prevent transmission exactly?

Read New Jersey's law. It provides for mandatory testing so doctors "can take steps." It does not mandate or fund treatment.

"Front lines" "Fighting disease" - whose rhetoric is hyperventilating. I KNOW how awful this disease is. I also know how much people want to control the bodies of pregnant women.

hope - Mirm must have gotten you confused with me. My mother works in the medical field in Atlanta and is the medical director of a clinic treating HIV-positive kids.

It sounds like her experiences are similar to yours - they get many grants to treat the kids, but for adults, getting treatment is far more difficult. She's had to jump through hoops to secure meds for her patients who are turning 18. If someone wants to talk about slut shaming, perhaps the discussion should be about why there are grants and federal funds for pediatric treatment, but not so much for adults (those sluts, homos and druggies are too easy to ignore, I suppose. but who doesn't feel sorry for the innocent kids?)

Wow, "hysterical feminists" "hyperventilating"?

This post very clearly says MANDATORY HIV testing. The discussion is about whether or not New Jersey should require HIV testing for pregnant women. No one is being "hysterical" or "hyperventilating." We are stating our concerns with mandatory testing. Here are some quotes from the article in the post:

Riki E. Jacobs, executive director of the Hyacinth AIDS Foundation in New Brunswick, the state's largest AIDS service agency, said the law won't help the women who don't get prenatal care.
"We need to focus on getting people into care and keeping them in care," Jacobs said. "That is our most potent prevention weapon."

The federal Centers for Disease Control and Prevention has recommended all pregnant women be tested for HIV, though it has said testing should be voluntary. (emphasis mine)

Pardon me for siding with the experts!

Shelby - the post says there would be an "opt out". I'm not sure that "opt out" really qualifies as "mandatory", since you don't have to do it. I'd be happy if testing were the norm for all pregnant women in order to prevent transmission to the baby and the opt out were available (but discouraged and hopefully rarely used))

Mirm, testing allows HIV+ mothers to prevent transmission to their babies by

1) notifying them of their status

2) allowing doctors to take steps to prevent transmission--csection, etc.

If the mother was positive and refused testing, doctors would not know to carry out those precautions.

Testing a child at birth is inconclusive at best. No other health testing should be forced in anyone. It is really easy to treat a woman who is pregnant as being less than human, but she has the same right to refuse screening as anyone else.

"How does the testing itself prevent transmission exactly?"

Testing mothers prevents their children from getting HIV by allowing the mother to be put on drugs that lower MTCT rates to about 3%. Without these drugs and the precautions such as c-sections and not breastfeeding, the transmission rate is anywhere from 25% to 50% of children born to HIV+ mothers will also contract the disease Because a baby is covered under federal funding the mother would receive AZT treatments.

Because there is an opt-out clause, it is not completely mandatory. I do support the opt-out clause and think that should be part of every medical procedure. The testing would prevent children from being infected and that is great. Being on meds and using precautions drastically reduces mother to child transmission. Just like the HPV vaccine which prevents cervical cancer, I don't know why you wouldn't want these easy precautions modern medicine affords.

Like Panda said, if we are concerned with slut-shaming, maybe we should be attacking the fact that it is much harder for adults to secure HIV funding than children. The resources are there, but they require a lot more information than just an HIV test. That is a much worse invasion of privacy if you ask me.

In this case I don't see the test as all that invasive compared with the potential benefit. Prevention and care are the motivation for the test, and you can refuse it so I guess I don't see the big deal. If you can prevent something, why not?

OK, I have read a lot more of the comments. Forbidden coma, the original post is about mandatory testing. Panda, no one is arguing that HIV testing for pregnant women isn't a good idea, in fact, a great idea. Forced testing or refusing care to someone who refuses testing is the issue.

I am also a medical student. I may not agree with many treatments or refusals of treatment, but I sure as hell don't want state legislatures to decide which ones are allowed and which ones aren't, especially when it comes to women, and doubly especially when it comes to pregnant women.

While I am no fan of "slut shaming", I would assume the most common way a pregnant woman would get HIV would be from a cheating partner. That is what we heard in our Department of Health mandatory HIV training. What is important is to offer and encourage testing to all women during pregnancy and allow her to practice informed consent, which is more sacred to me than HIPAA any day.

Monkey - people die all the time by refusing screenings and treatment. Is it what I would want for my family member or for a future patient? No. Will I fight for their right to do so? Absolutely.

I'd be happy if testing were the norm for all pregnant women in order to prevent transmission to the baby and the opt out were available (but discouraged and hopefully rarely used))

And there is the problem: discouraged and hopefully rarely used Why do you think it’s ok to coerce someone into a medical test they don’t want? I am not HIV+, I know this. Why should I have to listen to a doctor lecture me on why I should get test I KNOW I don’t need? What happened to patient rights?

I’m sorry, but I’ll take the CDC’s recommendation over yours. The test should be readily available and recommended to the patient. The patient should be given all the information needed to make the decision, but it should ultimately be voluntary (without badgering), not an opt-out clause. Let’s not forget that some patients will never even be informed that they have the opt-0ut alternative.

Pregnant patients should be afforded the same rights as not pregnant patients.

And, with that, I am “opting-out� (probably more like "passing out") as my cold medicine has worn off and the aches and pains are kicking in.

Since it came up earlier, I am not for mandatory vaccines for anyone. My son was damaged by vaccines, so there is now way that I would want every girl to have to be vaccinated. Yes, there are ways to opt out, but most parents are not aware of that option, or it is difficult to claim exemptions in some states.

I am not for any mandatory medical care. I don't think that anyone should have any say with what happnes with my body.

There have been cases of children being taken away from their parents because the parents choose an alternative model of medical care.

Tell the women the risks involved without knowing your HIV status. Tell them what can be done to reduce their babies risks of contracting HIV. Tell them about what would happen if they tested positive and refused treatment. Tell them they have a choice and allow them to make it.

"Last question, why in world should I be FORCED to pay for a test I do not need (I know I am not HIV+, why isn't my word good enough)?"

I do not consider you or any other poster, a liar. But there are patients who are not forthcoming with their medical histories. Some actually lie, and the health care provider is simply unaware. It's a simple fact. There are also others who do not know their own health status, which is why tests such as these routine tests are required (and why health care providers practice "standard precautions" with all patients such as the wearing of gloves whenever there is possible exposure to bodily fluids and secretions - I remember when doctors, nurses and dentists did not wear gloves or eye protection). And the source of funding for HIV testing would be the same as for any other routine tests which patients may or may not agree to have. Insurance, out of pocket, public funds, or the hospital eats it.

Some posters consider medical testing to be for liability, not health promoting purposes. Very well. What do you think would happen if an HIV positive woman, as is her right, opted out of being tested for HIV, gave birth to an HIV negative child, then passed HIV to the infant through breast milk? Why should the hospital be open to liability for the mother's decision if someone gets the bright idea to sue the hospital for "allowing" the baby to get HIV? What would be the public reaction to a hospital "allowing" a baby to get HIV? It would be safest for the hospital not to allow the mother of unknown HIV status to breastfeed while in the hospital. If the mother is indeed HIV positive, it would also be safest for the baby.

Once out of the hospital, if an HIV positive mother decides not to seek treatment, or does not practice better judgment with her own child or partners, that is indeed, and unfortunately, her affair. It is for the hospital to provide professional, nonjudgmental care for all who come through its doors, if mother or child ever return.

As for men or male partners, I am all for routine, but optional testing, as it is for pregnant women.

While indeed unfair that the mother is considered the "only" means of HIV transmission to her baby, how do posters forsee an HIV positive male with an HIV negative female partner passing HIV to that woman's child? Is he sharing needles or directly exchanging bodily fluids with the child? Is that what fathers or HIV positive males are being suspected or accused of? No one is accusing or suspecting HIV positive mothers of this. It is a simple fact that an HIV positive mother, through NO fault of her own (the reason for her own HIV infection, of which there are a number of possibilities - needle sticks in health care providers - is quite irrelevant, thus it is not "slut shaming"), through the natural processes of childbirth, and breastfeeding, can unknowingly transmit HIV to her child.

That said, it is still outrageous and inappropriate for CPS or any other authority to remove a child from a parent simply for refusing HIV screening, or simply for being HIV positive. HIV infection, while currently incurable, can be managed.

Eric: "these routine tests are required"

Sorry, I meant routine tests are offered or performed. They, as the prenatal screenings I have mentioned elsewhere, are not mandatory. I agree that health care providers need to better express the option to refuse.

"1. HIPAA is damn near useless and we both know it."

Indeed. Now that health care providers don't do email anymore, many expect you to call during office hours instead. Do the people who passed HIPAA really think a hacker's more likely to read your email than a boss or coworker is likely to hear you on the phone (now that phone booths are so rare so you can't step out and use one)?

"2.Why do you test? Is treatment free once you do? If not, what good does it do?"

If you knew that you were HIV+ and that you couldn't get treatment, would you still make an effort to not infect other people? Or would you not bother?

"No one has yet to address how this is different from wanting all girls vaccinated for HPV."

One difference I've seen mentioned in another thread is that even if the mother isn't tested, testing the newborn would reveal her HIV status (a HIV+ result means the mother's HIV+ too) and thus violate her privacy. That argument reminds me of this case:

http://news.bbc.co.uk/2/hi/africa/7117184.stm

"...Tumaini Mbogela said her husband beat her when she returned from a voluntary counselling centre in the town of Makete where she took the HIV test..."

If Ms. Mbogela tested HIV+ and there's nobody she could have got HIV from but her husband, then by testing her the centre would have revealed her husband's HIV status without his permission...

"Mirm, testing allows HIV+ mothers to prevent transmission to their babies by

"1) notifying them of their status

"2) allowing doctors to take steps to prevent transmission--csection, etc."

It also allows HIV- mothers to know they're at less risk, instead of leaving mothers and doctors wondering whether to do all the steps for every birth, just in case.

"What do you think would happen if an HIV positive woman, as is her right, opted out of being tested for HIV, gave birth to an HIV negative child, then passed HIV to the infant through breast milk? Why should the hospital be open to liability for the mother's decision if someone gets the bright idea to sue the hospital for 'allowing' the baby to get HIV?"

In that sort of situation wouldn't she and her family be more likely to argue that HIV doesn't cause AIDS, and/or argue that whatever infected her and her baby are parts of their culture, than to sue the hospital?

To posters such as mirm, Shelby Woo, DAS and others:

You are certainly entitled to your views, and I hope people like you continue to speak out. Your concerns have merit. You are not paranoid. I hope your rights and choices are respected if and when you receive medical care. However, I hope no one, male or female, will be prevented from screenings offered to guide patient care (or to the cynical, to avoid liability) or improve public health. I also agree information without action (eg, affordable treatment for the HIV positive) is useless for *that* patient. However, HIV screening of mothers, with measures taken at childbirth, is an attempt to prevent HIV transmission to the *infant*. It is not necessarily meant to directly benefit the mother at all.

"Why do the test, if there is no useful end result?"

Precisely because the costs and complexity of HIV treatment are so great, reducing the number of people with HIV in the future, which is to say with current technology, saving their lives and protecting the health of their future partners and children, by identifying babies in need of HIV transmission *prevention* so they can be treated, sounds very useful. We can have one or two patients (mother/partner) now, or a handful more in the future. You are correct that HIV testing on a baby already born is of limited usefulness, and no guarantee that they will receive further treatment.

Mina,

at your #2, you bring up some interesting points. But again, those results are because of public prejudice against HIV and the HIV positive. The same "violation of privacy" occurs with nearly any disease that can be transmitted through intimate or sexual contact. My wife being found with chlamydia or genital warts would mean she most likely got it from me. Why should this be used in any argument to prevent testing? So my wife and I would both need treatment. I would thank her and the hospital staff for finding it rather than reacting in anger or shame.

Eric: "What do you think would happen if an HIV positive woman, as is her right, opted out of being tested for HIV, gave birth to an HIV negative child, then passed HIV to the infant through breast milk? Why should the hospital be open to liability for the mother's decision if someone gets the bright idea to sue the hospital for 'allowing' the baby to get HIV?"

Mina: "In that sort of situation wouldn't she and her family be more likely to argue that HIV doesn't cause AIDS, and/or argue that whatever infected her and her baby are parts of their culture, than to sue the hospital?"

I hope you are being facetious. Lawsuits are filed for so much less than "killing babies" by "allowing" them to get HIV from their mothers. It is no wonder so many OB/GYNs are getting out of the business, *limiting choices* for women and mothers.

"Cars haven't always been labor-and-delivery units in Virginia's Northern Neck, an 85-mile strip of land on the Chesapeake Bay. Approximately 300 babies were born each year at Rappahannock General, and its two dedicated ob-gyns had been there for more than 20 years. But with the escalating costs of medical-malpractice insurance, obstetrics became such a financial drain that the ward was forced to close in 2004. Scenarios like this are playing out across the country as more and more ob-gyns and hospitals bail out of the birthing business. A survey by the American College of Obstetricians and Gynecologists (ACOG) found that one in seven ob-gyns has stopped delivering babies, and more than 20 percent have cut back on high-risk obstetrics."

http://www.parents.com/parents/story.jsp?storyid=/templatedata/parents/story/data/1166567779265.xml

Hawaii is composed of islands. There was a time recently when the island of Molokai, which previously had five OB/GYNs, lost them ALL to the skyrocketing costs of malpractice insurance (GREATER than ANY possible income). How would any woman like to get on a plane or take a 90 min. interisland ferry ride just to have a checkup? How would you like to plan trips just to have a baby, and pray that everything occurs without incident and on schedule? Would you complain about the medical establishment and doctors if anything went wrong? Would you call it anti-woman? (I would) But it is not THEIR fault they can't afford to be in practice.

Health care providers are extremely liability averse, for good reason. When I was a nursing student, I was extremely sorry to see how facilities had to cover their asses because they were so afraid of being sued. For example, unless you were a direct witness or personally responsible, you cannot write "Patient fell to the floor" in a medical chart. That would be SUICIDAL, implying to any lawyer or jury that the hospital/professional did not have complete control over every aspect of the patient's life and safety, not monitoring and protecting them 100% of the time while on the premises*. No, we were taught, if the time ever came, that we must write "Patient discovered on the floor."

[Lest anyone call this professional negligence, I invite anyone to explain how one nurse at a care home is supposed to monitor up to 20 to 36 patients (I have heard of 60:1 patient:nurse ratio in Honolulu) while also providing them all their medications or treatments on schedule? How about "just" six or seven demanding patients on an acute care ward? How about "just" two in ICU? Better yet, go to school, get your license, and show me how it is done. I want to learn.]

* Note that it is precisely this control or lack of privacy in order to protect them, is what posters are objecting to.

"Mina: 'In that sort of situation wouldn't she and her family be more likely to argue that HIV doesn't cause AIDS, and/or argue that whatever infected her and her baby are parts of their culture, than to sue the hospital?'

"I hope you are being facetious. Lawsuits are filed for so much less than "killing babies" by "allowing" them to get HIV from their mothers. It is no wonder so many OB/GYNs are getting out of the business, *limiting choices* for women and mothers."

True, that does happen a lot. It's just that I heard people caring more about preserving customs than about preventing AIDS happens a lot too.

According to the RH Reality Check report, opt-out-mandatory is only tantamount to actual mandatory testing when the consent isn't written. The specifics of the law should include a requirement for written consent.

Also, the test should be conducted as close as possible to the delivery date, since not all women carry their babies to birth.

With those clauses, saying mandatory testing is flawed would be tantamount to saying that a mother has the right to increase the odds that her child will contract HIV during delivery.

This is what the article says:

In Arkansas, which also has an opt-out testing program that doesn't require written consent, a study found that "16% of women tested did not even know that they had been tested for HIV." Without written consent, "...what they're calling ‘routine testing' will, in practice, be 'mandatory testing," Rose Saxe says.

"It's just that I heard people caring more about preserving customs than about preventing AIDS happens a lot too."

I would welcome any client/patients with views like those of posters to this site. I would treat them as I would any other person who comes through the door. I would, however, also like them to sign releases from liability whenever exercising their right to make their own health decisions, so I or my employer will not go bankrupt for client/patient choices. I would also be grateful if client/patients did not badmouth or sue professionals and their employers when things go wrong, if the unfavorable outcome results from client/patient choices, such as breastfeeding with HIV against medical advice, or against hospital policy. HIV transmission to infants can only be effectively prevented if we know ahead of time that the mother is HIV positive, and the proper measures taken. The client/patient's word is not enough to gamble another life on. We would need to test the mother at some point to know how to proceed. That is, if it is the mother's intent to have a baby without HIV.

"Also, the test should be conducted as close as possible to the delivery date, since not all women carry their babies to birth."

"Without written consent, '...what they're calling ‘routine testing' will, in practice, be 'mandatory testing,' Rose Saxe says."

Good points, SNM. That is one more way to reduce unnecessary testing and costs. Request for consent for each proposed test should also be written and initialed or signed, to inform client/patients, and for legal purposes. Authorization for routine newborn immunization and testing is that way at facilities in my community.

Informed consent is respectful of client/patient rights, and people should not be "surprised" by unauthorized tests, procedures or fees.