Mandatory HIV testing

[Freud]

So, I had another thread on here about this a while back, but it seems the law has since changed. Basically, the law in Illinois states that the mother must have an HIV test during her pregnancy or her newborn will be tested without her consent. It seems that the new law has deleted the part of the old law that allowed for religious exemptions.

What can be done about this? This can't be possible. It's unconstitutional. How would one go about refusing both tests? I'm not pregnant, but this outrages me. The only people who are mandated by law to get HIV tests are felons and pedophiles, now we're adding women and newborns??

[ishyfishie]

I've been told this is the law in NY as well.

[MaterPrimaePuellae]

The midwife told me this was the case in SC as well. The whole thing makes me pretty angry, too

[frugalmama]

Law in TX here too - they tested me not once, not twice, but THREE times during my pregnancy and after the birth.

[Freud]

Yikes! I wonder how this passed in so many states. It's for sure unconstitutional. I wonder if those who homebirth with a midwife are subjected to that same protocols.

[nia82]

I was told that in CA two years ago. I did it cause I didn't want DS to go through the blood draw. I am sort of used to it, had to do it for immigration and tried to see if that test was ok with them, but of course they say you could have caught it recently.

[littlecityfarmer]

HIV test is mandatory in NY, with every pregnancy-- not sure about in homebirths, though. I'd imagine that unless somebody UC'd, mom and/or baby would be tested.

I don't have any overwhelming philosophical opposition to HIV testing, though I do think it is a waste of resources to mandate testing across the board, since people who are in a long-term monogamous relationships with clean partners and/or diligant about practicing safe-sex (when not TTC, that is .) are at low-risk for contracting HIV. It would be sensible, however, to test people with a history of risk factors (IV drug use, risky sex with multiple partners, early 1980s blood transfusions, etc)-- some women may only receive medical care, or only have insurance, during their pregnancies, and universal testing probably helps get some people into treatment that otherwise wouldn't have been diagnosed, and for that reason it makes sense to me from public health standpoint. I doubt medical professionals want to be punative with the results-- that would be highly unethical, anyway--but they do want to make sure that any potential complications that might occur in an HIV+ pregnancy are accounted for.

Every pregnancy, I've been counseled about testing. Every pregnancy, I've said "I'm in a mutually monogamous relationship with my husband. I have no doubts about his fidelity, and I would be extremely surprised, but would have plenty of family and community support, if I tested positive." Every pregnancy, I've (as predicted) tested negative. However, the test itself was relatively painless-- what's another tube of blood when you're already having 7 drawn (I have complicated pregnancies and have to get lots of blood drawn, anyway)?

[ishyfishie]

I'll ask my homebirth midwife about it tomorrow--I think I was tested along with the other "pregnancy bloodwork" she sent me for at the beginning, but with my last pregnancy, the (hospital-based) midwives specifically talked about the state law stuff so maybe it wasn't included this time. I'll find out and report back after my appointment tomorrow evening!

[emnic77]

I have no problem with HIV testing. It's possible to get HIV without involving sex or dirty needle sharing, however slim, and my midwife is going to be dealing with all sorts of my bodily fluids, so I have no issue with being tested along with the initial blood draw.

That said, I have HUGE issues with any state MANDATING any sort of testing, just like I have problems with any sort of mandated vaccination or any other mandated health policy. Leave it to hospitals or health care providers. If they want to have a policy that says we won't provide care unless you have this test, that's their prerogative, but it's absolutely no business of the state IMO.

[soso-lynn]

Originally Posted by Freud

The only people who are mandated by law to get HIV tests are felons and pedophiles, now we're adding women and newborns??

That statement is just horrible on so many levels.

I think that every pregnant woman should get tested for HIV. With proper care, the transmission rate becomes practically non-existent so there is a huge benefit to finding out as soon as possible. If a newborn is tested immediately after birth, medication can be given to prevent sero-conversion and that is very much time-dependent. The whole "I trust my partner" line as been proven to put a lot of people at risk in many situations and there are other ways of catching it. I also think that for HCPs to try to distinguish between high-risk and low-risk people is a great way to start being judgemental and discriminating.

That being said, any law that forces any kind of medical procedure or testing on anyone is obviously wrong. I do think that that kind of extreme measure is to be expected in American culture. A lot of it has to do with the health care system that is run as a business. In most other countries, a simple directive encouraging a certain standard of care is sufficient to achieve public health goals. Informed consent is still the official standard an anything can be opted out of with a simple no, no need for religious or other exemptions. With the American system, the only way the government can force doctors to do anything is through a law and the only way people can circumvent a law is by invoking some other legal right like freedom of religion.

[Freud]

I totally agree with the previous two posters. There is nothing inherently wrong with HIV testing or even having a policy that all pregnant women be tested. The problem is the mandating of such procedures (without writing into the law the right to religious exemption) which are unconstitutional. I think we've been on a slippery slope with health care, as the government thinks they know how to better manage our health care than our trusted (hopefully) doctors whom we have chosen to entrust our general health and the health of our unborn babies. HIV testing in pregnancy, especially mandated testing, is a touchy subject because of the risk of a false positive and then being forced to take very strong medications that can impact the unborn baby. Can you image the outrage if a woman received a false positive and was given AZT during pregnancy and then found out that she was in fact negative? Huge legal, medical, and ethical ramifications.

[mamabadger]

If I understand the statistics correctly, when you test a low risk population for a relatively rare condition, you tend to get many more false positives than true positives. Considering the consequences of a positive HIV test, for both mother and baby, the potential for harm is enormous.

[RedPony]

Originally Posted by soso-lynn

I think that every pregnant woman should get tested for HIV.

If I tell my HCP provider that there's NO CHANCE of me having HIV, why should I be tested? I haven't been (tested) during pregnancy nor have my babies. There's ZERO chance I've contracted HIV, which I didn't have to prove to my midwife, which is one of the millions of reasons I chose to have a homebirth. I'm glad I had this freedom and I think all women should have it.

[Belle]

I declined to have an HIV test during my first pregnancy and the OB nurse was very pushy about it. She said scary stuff like I could kill my newborn if I tried to breastfeed and I was HIV positive. I still declined. I knew I would not be positive.

My HB midwives for my second pregnancy offered it to me. They were not pushy, just letting me know that it was available if I wanted it. I declined and it was no big deal. I miscarried that pregnancy and ended up with a blood transfusion so...

My third pregnancy with the same midwives I opted for the HIV test. I wouldn't have done it if I hadn't had a blood transfusion. I'd have passed on the prenatal blood testing altogether.

It may be no big deal for some women to give another vial of blood but for me it is nothing less than torture to draw blood. I completely freak out and go into full blown panic mode. For some reason, having my finger pricked to check my iron doesn't bother me at all but a needle in my vein is terrible. This has gotten worse since my miscarriage. I think being completely unable to move and having people unsuccessfully try to stick needles into both arms while I was bleeding to death may have contributed a little to this.

[elmh23]

Originally Posted by RedPony

If I tell my HCP provider that there's NO CHANCE of me having HIV, why should I be tested? I haven't been (tested) during pregnancy nor have my babies. There's ZERO chance I've contracted HIV, which I didn't have to prove to my midwife, which is one of the millions of reasons I chose to have a homebirth. I'm glad I had this freedom and I think all women should have it.

How do you know that there was no chance? Presumably you had sex to get pregnant, which is a way to contact HIV. While you trust your partner, they might be seeing someone on the side that you don't know about. This is one of the ways HIV is transmitted.

[soso-lynn]

Originally Posted by Freud

I totally agree with the previous two posters. There is nothing inherently wrong with HIV testing or even having a policy that all pregnant women be tested. The problem is the mandating of such procedures (without writing into the law the right to religious exemption) which are unconstitutional. I think we've been on a slippery slope with health care, as the government thinks they know how to better manage our health care than our trusted (hopefully) doctors whom we have chosen to entrust our general health and the health of our unborn babies. HIV testing in pregnancy, especially mandated testing, is a touchy subject because of the risk of a false positive and then being forced to take very strong medications that can impact the unborn baby. Can you image the outrage if a woman received a false positive and was given AZT during pregnancy and then found out that she was in fact negative? Huge legal, medical, and ethical ramifications.

False positives are more frequent suring pregnancy for the SCREENING test aka the antibody test that is done as a first step. These tests are MEANT to catch every possible case so they have an inherent rate of false positives. Whenever a positive result comes up, it is automatically sent for confirmation, usually to a specialized public health lab, to get more specific and precise testing done. Those tests DO NOT have a high false positive rate. A woman would never be diagnosed with HIV from an initial screening test. Most people followed by a doctor would never even know that they had a false positive as the doctor would ALWAYS wait for confirmation. so yes, it would be outrageous if a pregnant woman was treated for HIV if she did not have it BUT IT DOES NOT EVER HAPPEN.

Originally Posted by RedPony

If I tell my HCP provider that there's NO CHANCE of me having HIV, why should I be tested? I haven't been (tested) during pregnancy nor have my babies. There's ZERO chance I've contracted HIV, which I didn't have to prove to my midwife, which is one of the millions of reasons I chose to have a homebirth. I'm glad I had this freedom and I think all women should have it.

I think that you have the right the refuse the test. However, that kind of attitude is just ignorant. I work at a fertility clinic and we have to test every patient whose reproductive material will be in our lab for the whole slew of STDs and other diseases. Most people who get positives are people who think they had zero chance.

In the past several years, it has been noticed that the groups that are getting more and more STDs are people considered low risk. Many doctors have focused their attention on people they considered high-risk and might have not offered testing for their middle-aged, married patients. Studies on this looked at chlamydia, gonorrhea and such but it would likely old true for other STDs as well.

[MegBoz]

Originally Posted by elmh23

How do you know that there was no chance? Presumably you had sex to get pregnant, which is a way to contact HIV. While you trust your partner, they might be seeing someone on the side that you don't know about. This is one of the ways HIV is transmitted.

Ok, so should women be tested on a monthly basis then? Presumably, if they continue to be in a relationship, they'll have sex throughout the pregnancy & could contract it then.

How about Herpes? That can be trasmitted to the baby during birth, so should women be tested monthly for that as well?

Honestly, that is just ridiculous. If you're having sex with a partner, you MUST trust them. You could be wrong, but you as the mother have the right to decide to get tested "just in case." As another poster wrote, your HCPs could release you as a patient & decline to care for you if you refuse. But you still can't, and shouldn't be forced.

No provider or anyone should make you feel paranoid & perpetuate a belief system that would shatter the foundations of marriage (if you're telling me I ought not to trust my husband, they you're endermining my whole marrige.)

I got tested with my DS because I don't mind blood being drawn & they were doing it for other stuff anyway. I will refuse whenever we conceive #2. And if some HCP encouraged me to do so "just in case your DH has cheated" I would take offense to that.

[Plummeting]

Originally Posted by soso-lynn

Most people followed by a doctor would never even know that they had a false positive as the doctor would ALWAYS wait for confirmation. so yes, it would be outrageous if a pregnant woman was treated for HIV if she did not have it BUT IT DOES NOT EVER HAPPEN.

I got a false positive on an HIV test about 11 years ago and I did know it happened. I'm glad policies are different now, and that experience didn't convince me to forego the test during this pregnancy or my other - although tbh I don't even know if they were doing it routinely 6 years ago; I just know I didn't decline - but it does make me very, very nervous about HIV tests in general.

At the same time as that test, I also got a false positive on a syphilis test (boy, that was a fun week) so it was explained to me as highly likely that both were related to an immune thing I had going on at the time. At any rate, I'm glad to know that they handle things a little better nowadays, by following up with further testing before they scare the pants off of people.

[Plummeting]

Originally Posted by MegBoz

How about Herpes? That can be trasmitted to the baby during birth, so should women be tested monthly for that as well?

Just as a practical matter, there's not really a reliable test to tell if the woman has contracted genital herpes versus oral herpes or herpes gladiatorum (herpes elsewhere on the body). The only test for that would be swabs, but those would only detect genital herpes during active outbreaks or asymptomatic shedding, which doesn't happen every day or even most days. The risk of transmitting herpes to the baby in the absence of an outbreak is very low. A provider should notice most herpes lesions and in that case a c-section would be performed. In the absence of lesions, vaginal delivery is considered safe.

[soso-lynn]

Originally Posted by MegBoz

Honestly, that is just ridiculous. If you're having sex with a partner, you MUST trust them. You could be wrong, but you as the mother have the right to decide to get tested "just in case." As another poster wrote, your HCPs could release you as a patient & decline to care for you if you refuse. But you still can't, and shouldn't be forced.

No provider or anyone should make you feel paranoid & perpetuate a belief system that would shatter the foundations of marriage (if you're telling me I ought not to trust my husband, they you're endermining my whole marrige.)

So, you are actually saying that it would be acceptable for a doctor or midwife to refuse care if someone did not want to get tested. I find that equally as horrible as a law requiring testing. What happened to informed consent. Doctors HAVE to treat people and give them the opportunity to make decisions on every aspect of their care. They canot just get rid of patients who disagree. I know it does happen in the US, but it is just so wrong.

If getting tested for HIV would shatter your marriage, then your marriage has a problem regardless. No one is telling you not to trust your husband, just not to put that blind trust above the health of your children. Perhaps we have different definitions of trust, but this just does not make any more sense than when I hear people saying gay marriage undermines their heterosexual marriage.