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re: Bill S2704:
Mandatory HIV Testing for Women & Babies of NJ
Hello. My name is Kimberley Collins. I am a birth doula,
childbirth educator and mother. Like many who govern our state,
I am also a non-practicing attorney. I write together with
fellow mother and concerned constituent, Lisa Duggan, publisher
of NJ parenting publication, The MotherHood. We reside in New
Jersey and likely voted for those of you whose job it is to
govern our state. It is our hope that you care as deeply as we
do for the mothers and children of New Jersey. We write on the
eve of the vote on Bill S2704 and respectfully ask you to vote
down this proposed legislation.
If approved, Bill S2704, proposed by Senate President Richard J.
Codey,
would make New Jersey the first state to require both pregnant
women and newborns to be screened for HIV. The bill would
require all pregnant women be tested for HIV twice, once early
in the pregnancy and a second time in the third trimester.
Every birthing facility in the state would have to test all
newborns in their care. This proposal seeks to replace the
existing “opt-in” testing currently in use in the state.
ARE THE TESTS ACCURATE?
Mr. Codey referred to his proposal as a “no brainer” in spite of
the fact
that the 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.1
An HIV positive test result, whether a false positive or not,
implies a diagnosis of death in seven to ten years and a
lifetime prescription of toxic anti-retroviral medication, to
commence during pregnancy. It generally confers the advice to
contribute to the cesarean epidemic (as you may know, NJ carries
the shame of having the highest cesarean rate in our nation) by
submitting to a surgical birth, to formula feed instead of
breastfeed and will likely contribute to postpartum depression,
all serious public health issues in NJ and all over the US.
Each legislator should be required to possess intimate knowledge
of the HIV test process and all its potentially fallibilities
and associated dire outcomes before mandating said testing to
the women and children of New Jersey.
Thus, before this legislation is passed, on behalf of the women
and children of NJ, we request the following:
That all members of the Senate, Assembly, governor’s office and
each member of their respective households submit to an HIV test
before casting their vote.
But before consenting to the test all members should be made
aware of the following:
For 66 true positive test results, there were 30,000 false
positives, according to one study published in the medical
journal Lancet.2
60% of infants who test positive at birth will test negative at
18 months without anti-retroviral treatments.3
In case you’re thinking that false positives are a small price
to pay for
finding true positives, please contemplate what a false positive
will
actually mean for New Jersey families.
"Since the blood from all infants scoring preliminarily positive
on rapid
tests will be subjected to confirmatory testing, many of the
mothers who were erroneously told they are “likely to have HIV
infection,” will only have to carry this psychological burden
for a week or two (i.e., until confirmatory tests prove them to
be negative). However, many of these wrongly diagnosed
women will have to wait much longer than this before learning
they are not infected. The reason for this is that many
persons with false positive screening tests (e.g., rapid tests)
will test “indeterminate” on follow-up testing, and these
results can only be resolved as truly negative by repeat testing
on samples taken 1-3 months into the future4.
According to the package insert of one FDA approved confirmatory
test, more than half of all persons with false positive
screening tests in low risk populations (e.g., blood donors or
pregnant women) can be expected to fall into this category.5
"
DOES MANDATORY TESTING MAKE FISCAL AND LEGAL SENSE FOR NEW
JERSEY?
We don't think so. At the very least, we are concerned that the
bill is
silent on many critical issues.
Who is expected to pay for state mandated HIV tests?
Individual families, the state, or health insurance companies?
Will there be a central diagnostic facility or company
responsible for processing all state mandated HIV tests? Does
New Jersey state currently have a contract with any such
facility and does any member of legislative body responsible for
passing this legislation have financial connections to these
facilities or companies? Who will have the final word in
determining a test result to be ultimately “positive” or
“negative” when the returned test results are “indeterminate”?
Will test results be reported to other state or federal agencies
and will HIV positive test results cause women and families to
lose existing health insurance, or be prevented from obtaining
health insurance in the future? Will women who test positive be
allowed to re-test until they are satisfied that the result is
accurate? Who will pay for the re-testing? Who will pay for the
medical treatment(s) recommended to women and babies who test
positive? Does the bill include plans for and monies allocated
to on-going psychological counseling for women testing positive
that will be (1) advised to terminate their pregnancy and/or (2)
be at an increased risk for suicide and/or (3) will be required
to take drugs associated with serious potential side effects,
and are known to cause cancer and birth defects in animal
studies or to administer these drugs to their infants?If an
infant or mother dies while receiving these drug therapies, will
families be permitted to file suit against the state for
financial and emotional damages? Does the bill provide for
funding for legal assistance for those women testing positive
who dispute the outcome of their or their children’s HIV tests?
Will child custody or public assistance to families be tied to
compliance with this testing and the advised protocol if found
positive?
Mandatory testing violates a woman's civil rights to make her
own childbearing and medical treatment decisions and potentially
can 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 a decision on mandatory
testing for the women and children they serve. And be willing
to submit to that which you may require of your constituents.
(Supporting documentation is available immediately by request to
themotherhoood@comcast.net.)
Thank you.
Kimberley Collins, JD, CD(DONA), AAHCC
Lisa Duggan, Publisher, The MotherHood
themotherhood@comcast.net
1. Roche Pharmaceutical’s amplicor HIV-1 monitor test
packaging, 1996.
2. Lancet issue 339; 1992.
3. Stramer et al. "Detection of HIV-1 and HCV Infections among
Antibody-Negative Blood Donors by Nucleic Acid–Amplification
Testing. New England Journal of Medicine, Volume 351:760-768,
August 19, Number 8, 2004.
4. An indeterminate supplemental test result may represent an
incomplete antibody response in persons who have been recently
exposed to HIV. Since it may take 1-3 months to develop a full
antibody response in such cases, the only way to rule out
infection is to repeat the test on a sample taken at that time.
If the follow-up sample also tests indeterminate or negative,
the patient can then be told they are not infected.
5. Epitope, Inc., Beaverton, OR. Package Insert for HIV-1
Western Blot Kit. US License No. 1133, March 20, 1991. Epitope,
Inc., Beaverton, OR. Package Insert for OraSure[R] HIV-1 Western
Blot Kit. US License No. 1133, January 10, 1996.
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