Mandatory HIV testing for during pregnancy

I have participated in a few discussions on New Jersey’s new opt-out policy regarding HIV testing of pregnant patients, such as here and here. When I saw Rachel talking about it here, I decided it would be easier to not start from scratch again on her thread. I had wanted to compile my thoughts on this issue in a complete essay, anyway. Some of it is in response to other comments, so sorry if it sounds like I am arguing with an invisible adversary. If you have any question as to what the arguments are for forcing HIV testing on pregnant women, follow any of the links.

New Jersey passed a law that is an opt out law. If it is like the one we have in Florida, it means if a woman refuses, she has to sign something stating that she is refusing. The part that bugs me is that they can apparently test the newborn if she refuses. This is a useless test for determining the HIV status of a child; a positive test would only reflect the HIV status of the mother. It would also set into motion, probably, a series of painful tests on the child for the first few years of its life if not longer to see if the antibodies clear.

The opt out part does not bug me as much – it means that they have to offer it to everyone. My experience at the birth center where I trained meant that not having opt out (it was instituted late in my training) means many practitioners do not offer HIV tests to people they don’t think are high risk. So, HIV tests got offered to poor women, single women, women of color, etc., and not to married women, white women, or women who dressed conservatively in the center where I worked. I would sit it the room with midwives who would say “We re-offer the HIV test at 34 weeks, but since you’re married…” and leave it at that. With the new “opt out” policy, they had to sign something saying they were refusing the test, but we had a sheet in every file with lists of tests they could refuse, and allowed many prenatal tests to be refused.

Now, this facility did require a mandatory HIV test upon admission to deliver with them or be treated with them. I do not think it would be legal for midwives to deliver an HIV positive woman in Florida, where out of hospital birth is highly regulated. I did not agree with the refusal of treatment, but it is the right of a private facility to screen and refer patients, and they can choose to go to another facility. I do not know of many facilities, private or public, that would allow you to refuse any and all HIV testing and still treat you, but I have not researched if there have been any showdowns over it in Florida. I suppose ultimately, a public hospital should treat you, but that would probably be if you came in in labor, not if you came in for prenatal care regularly as patient. Now that rapid testing is available, I see this as mainly a problem for women who come in with no prenatal care in labor, who can now be given a 20 minute test on the spot. I read recently that California is no longer going to require written consent for HIV testing, and I can only assume the abuses will start piling up.

I haven’t heard anyone 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 a woman who has been pregnant, a parent, and 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.

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.

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.

It is typical and insulting to single out birthing moms and target them for mandatory policies. It treats them as a vessel, not an autonomous patient. Again, no one is arguing that screening and intervention are effective and may save lives. What we are arguing is that women still have the right to refuse.

The right to refuse screening or medical treatment is a fundamental right guaranteed by the bill of rights (prevention of search and seizure) and other significant legal precedence. I may think many medical procedures are valuable and/or necessary, and many aren’t. This makes a difference in what I choose for my family, screening and treatment wise, and what I refuse. I really like this right, and wish to have it extended to others. Including my patients. It is called informed consent.

Mothers should be told the benefits of the screening, the risk of HIV to the child, the reduction of risk of transmission if they are tested and treated and certain interventions are chosen (like cesarean section) and then should be allowed to make a very valid choice about their medical care. And if the practitioners do not know her HIV status, they should treat her as if she is infected (except for antiviral meds, of course) which would involve universal precautions, which they use for everybody anyway. What if she does get coerced into the test, finds out that she is HIV positive, and then is unwilling to take the antiviral meds or have a scheduled cesarean? How far do we go to we subjugate her desires to prevent transmission?

It is really easy to treat pregnant women as merely a vessel for their babies, and ignore their rights when someone, usually a doctor, judge, or legislator, decides that they “know better”. You may agree with them in this case, but don’t forget what this may do to your rights or other pregnant women’s rights down the slippery slope.

I went to a lecture recently on pediatric ethics. It was fascinating. There was a recent case in which a 12 year old (I think he was twelve – he was a younger teenager if not) refused cancer treatment and died. His parents had issues earlier in his life and gave him to an aunt to raise. An aunt who happened to be a Jehovah’s Witness. The parents took the aunt to court. They lost, and he died. People die from refusing care all the time. People infect people with HIV all the time too, not just through childbirth.

Again, no one is arguing that screening and intervention are effective and may save lives. What we are arguing is that women still have the right to refuse. Just like anyone else, just like the case I posted about the boy refusing blood transfusions. He died. People die from refusing care all the time. Men walking all over the world can infect other people and kill them eventually with the AIDS virus, but we do not pick one point in their lives (like childbirth) and say “Hey! You need an HIV test before you can get this vital care.” Men in prison infect other men in prison with HIV.

I am sure testing men when the are initially incarcerated and even coming up with an HIV prison and a non HIV prison would do SO much more in preventing the spread of HIV in America than testing moms in labor. Would it be ethical? Not sure. Do they do it? No. As far as I know, they are not testing when they show up or when they leave prison, and the HIV rates there can be in the double digits. So can the rape rates.

The 20 minute test (which I think is a rapid ELISA) and the tests that take longer (Western Blot, etc) are not true indicators of HIV status. I do encourage people to “know their status”, but it isn’t definitive. All HIV tests test antibodies, and only indicate if one has been exposed in a certain window. Someone who has regular exposures (unprotected sex, while pregnant, say…) with anyone, even a spouse they trust, can be exposed at any time. People have sex and lie to their spouse. People use drugs and lie to their spouse. Unless we start hauling in partners (ALL partners, needle sharing and sexual) and require them to submit, no true universal comprehensive testing could occur. A positive partner could infect a negative mother and she could pass it on to the baby, even after birth, if she is breastfeeding.

I think refusals will be extremely rare, and not necessarily among HIV positive individuals. The strong arguments about the effectiveness of preventing transmission would be more persuasive to me if I thought many HIV positive women would refuse.

I hope that people who think that women who are pregnant should lose their rights will always agree with what people who have control over them thinks is best for them and their families. If not, remember this.

I hope that people who disagree with me never have to go through a situation where someone who has control over their families’ health care does not agree with them about what is best. If that is the case, I hope they get the right to make an informed decision, and maybe they will remember this discussion at that time.

8 Comments

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8 responses to “Mandatory HIV testing for during pregnancy

  1. Pingback: Mom’s Tinfoil Hat » Archive » Back pattin’

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  5. Hanna

    This is really such a difficult subject. The reality is that we don’t allow parents to decide to treat their child’s leukemia with rosemary oil.

    So I’m not sure why mandatory HIV testing (and the known result of an HIV positive child not receiving testing/treatment – look up the case of HIV=AIDS denialist “Christine Maggiore” and her daughter “Eliza Jane Scovill” who tragically died at 3 1/2 from a very preventable and treatable illness brought on by HIV) is unpalitable to anyone when it could save the life of the innocent child who had no choice in the matter.

    • MomTFH

      But, we do allow refusal of treatment even in leukemia cases.

      And, refusal was allowed in the case of Christine Maggiore. I disagree with her and think what happened to her child is tragic. But, legal and protected behavior.

      When we look at individual anecdotes, it is easy to be upset about bad individual outcomes. For both cases above, a child died. But, many more children die every day in car crashes.

      I think the good in allowing people to have informed consent (and freedom to refuse, and freedom to practice religion, and to have autonomy in parenting) is more important than forcing medical care, regardless of isolated lives that may be saved, or prolonged (generally, still with illness and with a very upset family, or termination of parental rights).

      Just like allowing people to drive freely, with children in the car, is more important than preventing deaths due to refused testing or care.

  6. Pingback: When is a person old enough to refuse treatment? | Mom’s Tinfoil Hat

  7. Ariann

    I know this is a very old post, so I hope you will see this comment. I’m a frequent reader of your great blog. I am 20 weeks pregnant and live in NJ. As I understand it, the law is to test twice – at the initial prenatal visit and at 28 weeks. At my first visit, I was not informed that I was being tested for HIV (or Syphilis, or that they were taking samples during my pap smear to test for chlamydia and gonorrhea). Beyond the lack of informed consent, there was no opportunity to opt-out because what I thought I was agreeing to was not ALL I was apparently agreeing to.

    I’ve been in a monogamous relationship for 8 years, have been tested for all of these things during that period, and have donated blood within the past couple of years and also been tested as a condition of working in a hospital in the past year. I know I don’t have HIV. I know there is no risk of me getting HIV unless I am somehow involved in a needle stick accident. I am horrified that I was not informed that I was being tested for HIV the first time around – how can a health provider (in this case a midwife) test for such a thing without doing even a moment of pre-testing counseling? What if it were positive and I didn’t even know I had been tested? How could I continue to trust such a provider?

    I have no problem with public policy encouraging health care providers to offer HIV testing to all pregnant women (and to all patients, period), but I do have a problem with the resultant abuse that comes out of it – they’ll consider it absolutely okay to test you with absolutely no consent whatsoever and no opportunity to opt out unless you’re going to opt out of all care. When you complain they say, “That’s the law.” It’s certainly NOT the law that my person or my medical privacy can be violated in that way. Even if it’s stupid not to know one’s HIV status, each individual has the right to know or not know as they see fit and to do with that information what they will.

    So now I have to gear up to prevent my child from being needlessly tested as well.

    Beyond the insidious loss of personal autonomy and the right to make medical decisions for oneself and one’s family, we are also forced to bear the cost of unnecessary testing!

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