28 August 2008

and so it begins

I was at a birth recently where, for the first time, the nurse sort of made a whole big thing about explaining that the mom was required by law to submit to another HIV test (though some who question HIV/Aids research call it the "so-called HIV test"). NJ law was recently changed (and changed and changed...the written legislation just kept getting worse & worse as it went along and the legislators got all emboldened by thinking they were on the side of the angels*). Women are now required to...well, I'll let the NY Times explain:

Under the law, women will be tested early in their pregnancies and again in their third trimesters unless they refuse. If a woman refuses, it will be noted, and an H.I.V. test will be performed on the newborn unless the mother has religious objections.

This mom had recently switched from an OB to midwives and had maybe not been retested (maybe - the nurse, let's call her Nurse Ratched, took the mom's recollection rather than asking the midwife or checking the records) in her third trimester. So she was given the option of donating some of her own blood to be tested now or waiting for her baby to be stuck. Of course she submitted. She was not told that she could decline. (we had talked about it in class & this mom was OK with being tested)

Why do I care? Not too long ago, I wouldn't have thought a thing about it...until I was asked to do an interview for a feature piece in The MotherHood (for which we took some heat and got lots of appreciation) and learned about the possibility of false positives on HIV tests during pregnancy or in newborns.

In a nutshell, here are my concerns (& the concerns of The MotherHood publisher, Lisa Duggan), published in an editorial in The Times of Trenton and relayed to our legislators in the state senate, where I spoke at hearings along with members of NOW, ACLU et al:

Today, bill S-2704, which proposes mandatory HIV testing for all pregnant women and newborns in New Jersey, is up for a vote. If the bill is approved, New Jersey would become the first state to require pregnant women to be screened for HIV twice -- once in the first trimester and again in the third trimester of pregnancy. The bill does include a provision allowing mothers to opt out of the screening, but this supposed freedom of choice is false, given that the bill also requires testing of newborn babies if the HIV status of the mother is unknown. This amounts to de facto testing of the mother's HIV status without her consent, as newborns carry their mothers' antibodies for the first 18 months of life.

Screening for HIV is currently an "opt in" choice for New Jersey women. The sufficiency of this method is borne out by a recent study conducted at the Johns Hopkins Bloomberg School of Public Health, which states in part: "A targeted campaign of testing and counseling aimed at those who are at high risk for HIV would be more effective than the mass patient screening proposed by the Centers for Disease Control and Prevention."If the legislative body of New Jersey is convinced that mass HIV testing is warranted, let its members begin with their own families: We challenge all members of the Senate, Assembly, the governor's office and each member of their respective households to submit to an HIV test before mandating mass testing for their constituents.

When Senate President Richard Codey proposed the bill most recently, he referred to it as a "no-brainer," despite the fact that HIV screening tests are known to cross-react with some 70 factors or conditions, including pregnancy and flu or other vaccinations, generating false positive test results. And in spite of the well-known fact that 60 percent of infants who test positive at birth will test negative at 18 months without anti-retroviral treatments.

An HIV positive test result, false or not, implies a prognosis of death in seven to 10 years and a lifetime prescription of toxic anti-retroviral medication to commence during pregnancy. It requires that a woman have a surgical birth. A woman testing positive will be prohibited from breastfeeding her child. Having a surgical birth and not being able to breastfeed are two factors known to contribute to postpartum depression, a serious public-health issue.

If readers are thinking that some false positive test results are a small price to pay for identifying true positives, we ask that they consider what testing positive actually means. If a woman's first HIV screening test is positive, she will have to carry this psychological burden for about two weeks, until confirmatory tests prove it to be negative. However, many wrongly diagnosed women will have to wait much longer than that before learning that they are truly not infected. More than half of all persons with primary false positive screening tests in low-risk populations (e.g., blood donors or pregnant women) can be expected to test indeterminate on their rapid confirmatory test. Test results can only be resolved as truly negative by repeat testing on samples taken one to three months into the future, and as the manufacturer of one confirmatory test states, "The psychosocial and medical implications of a [false] positive antibody test may be devastating."

When examining the fiscal realities of mass testing, we can look at the national analysis shown in the recent Johns Hopkins study. It determined that the CDC's mass testing strategy, on which the New Jersey bill is based, is likely to cost $864 million for one year: "For the same price, a targeted testing and counseling approach would identify more than three times as many people with HIV and could prevent four times as many new HIV infections compared to the CDC's testing strategy."

We're concerned that the bill is silent on many critical issues. No language in the current bill indicates, for instance, where funding for mass testing and requisite treatment will come. The bill does not address how state-mandated testing would compromise New Jersey's current medical privacy laws (HIPAA) or potentially result in the loss of insurance coverage for individuals and families.

Further, child custody or public assistance to families could be unfairly tied to compliance with this testing and advised treatment protocol. With the specter of child custody hanging over their heads, mothers and babies who test positive will be forced to take the currently recommended anti-retroviral drugs. These drugs are associated with serious potential side effects and are known to cause cancer and birth defects in animal studies. This is especially troubling for those mothers and children who are later proven through confirmatory testing to have been HIV negative all along.

Mandatory mass testing is neither dependable, nor cost-effective nor legally sensible for New Jersey. It violates a woman's right to make her own childbearing and medical decisions and can potentially lead to unwarranted and drastic medical treatment in the case of false positive results.

It is most certainly not a "no-brainer."

We urge each member with the power to vote on this legislation to study carefully all the available information on HIV testing and consider the fiscal and legal implications for the state before making testing and treatment mandatory for the women and children they serve.

I am NOT against testing when it is done out of informed choice. Especially when it is targeted. What I am against is yet another taking of women's ever-eroding dominion over their own bodies and the bodies of their babies.

Oh - and now apparently NJ has now made Vitamin K injections mandatory at birth for infants too...even the midwife didn't know about this one yet.

If you're still reading, thanks for hangin' in - I know this was a long one. But I should stop writing now - I need to make an appointment to take my kid in for that extra shot he now needs in order to be legal for middle school in NJ.

*at the hearings, I believe experts said there were some 6 cases of HIV positive infants last year in NJ - I'm going from memory of the specialist's testimony though


Christine said...

Thank you for taking a courageous stand against mandatory testing which in the case of HIV is actually worse than what you describe. A fact not mentioned in the article is that there are no HIV tests that can tell who really has HIV. All so-called HIV tests look for substitute markers for the virus such as antibodies or bits of genetic material, and apparently there is no scientific substantiation that testing positive for HIV substitutes means someone actually has HIV. If anyone reading this believes otherwise and can find a study published in the medical literature that demonstrates HIV can be directly purified from all or most people who test positive for HIV substitutes, you can collect a $50,000 award. Details are found on the home page of http://www.aliveandwell.org. In the meantime, thank you for pointing out some of the other problems with HIV testing.

The Mommy Blawger said...

Great post. I'm so glad to have stumbled across your blog.

DoulaMomma said...

Thanks, mommy blawger...just checking your blogs out too. Wow - were we separated at birth? Three boys, non- practicing attorney, birth...
Nice to "meet" you.

Christine said...

Thanks for taking a courageous stand on the issue of mandatory HIV testing. Your article brings up a lot of important information left out of most discussions on the topic and goes far beyond the typically superficial coverage that assumes any action taken in the name of AIDS is good and right.

There is however one enormously important point missing from your piece: the sorry fact that there are no HIV tests that actually look for or find HIV itself. All so-called HIV tests are only able to detect substitutes markers for the virus like antibodies or genetic material associated with HIV, and there are no tests for these substitutes that has ever been validated for its ability to identify the truly infected.

Maybe this point is too frightening to consider, but absent a study demonstrating that all or most all people who test positive for the substitutes have virus that be directly purified from their blood, there is no scientific or ethical basis for declaring that positive results means someone is infected with HIV.

In a world that worked, doctors and attorneys would be up in arm over the lack of a scientific or ethical basis for pronouncing someone HIV infected and altering the course of their lives and those around them.

By the way, anyone who believes that so-called HIV tests have been validated, if you have evidence for this belief it's worth $50,000. See the $50,000 Fact Finder Award at http://www.aliveandwell.org

Thanks for initiating an important discussion.

DoulaMomma said...

Thanks for your comment & the test information, Christine.