Lost in the Shuffle: Women's Right to Choose, Not Just Refuse, HIV Testing
March 4, 2009
A flurry of outraged discussion has continued in the wake of the voiced objections of Colorado State Senator Dave Schultheis to a bill, SB-179, which would, among other things, require HIV testing of all pregnant women who don't explicitly object to the testing.
Schultheis provoked the ire of Colorado Democrats, and AIDS and gay rights advocates, when he said he planned to vote against the bill because AIDS "stems from sexual promiscuity" and because the Legislature shouldn't "remove the negative consequences that take place from poor behavior and unacceptable behavior." Schultheis cast the lone vote against the bill, which passed the Colorado State Senate 32-1 and now goes to the Colorado House of Representatives for their consideration.
The bill mandates that blood be drawn at the woman's first prenatal visit and submitted for syphilis and HIV testing, but also states that the pregnant women can decline to be tested for HIV. If the bill passes and is signed into law, we can only hope for reasonable regulations that resolve the possible confusion of when the woman's right kicks in, and softens the coercive tone of the legislation.
The outcry and criticism of Schultheis' seemingly invincible ignorance and of the larger pattern of Colorado Republicans' acquiescence to the overtly homophobic commentary accompanying legislation that is not at all gay-related, is of course warranted and understandable. What is hard to understand is the acquiescence of these same critics to the assault on the autonomy and dignity of women that SB-179 and similar measures represent.
HIV (still without a cure) carries multiple implications for a woman's health and life well beyond pregnancy. With the persistent social stigma attached to HIV, a positive test result forever changes the personal life of the person diagnosed, and can trigger domestic violence, lost housing or employment, and social isolation. These real consequences of an HIV-positive result merit explicit discussions with patients. Yet SB-179 assumes a pregnant woman doesn't merit an explanation of the purpose and meaning of an HIV test, nor can she be trusted to make an appropriate decision if offered one. Colorado Democrat Nurse Thornton explains that the reason it's so important to test a woman for HIV when she's pregnant is "to protect the unborn baby" so that if she's HIV positive "treatment is started immediately to protect the baby." So much for mom.
Thornton and the rest of them may want to read the July, 2008 USPHS Task Force Recommendations on the use of antiretrovirals (ARVs) with HIV-positive pregnant women. In fact, healthy HIV positive women who don't need ARVs for their own health should wait at least until the second trimester before starting treatment. More to the point, the 2008 recommendations, which reaffirm the right of an HIV-positive woman to retain control over treatment decisions that affect her and her fetus, stress the importance of information and counseling to pregnant women. The recommendations state: "After counseling and discussion, a pregnant woman's informed choice on whether to take antiretroviral drugs either for her treatment or for prevention of mother-to-child transmission or to follow other medical recommendations intended to reduce perinatal HIV transmission should be respected. Coercive and punitive policies are potentially counterproductive in that they may undermine provider-patient trust and could discourage women from seeking prenatal care and adopting health care behaviors that optimize fetal and neonatal well-being."
Our friends who unanimously voted for SB-179 may also want to re-read Colorado's Patient Bill of Rights, similar to that adopted in nearly every U.S. jurisdiction. This gives hospital patients the rights to give informed consent for all procedure and treatments following an explanation in layperson's terms; and to participate in all aspects of one's care plan and decisions, to refuse any test or drug, and to be involved in any decisions that might involve ethical issues, or the patient's personal values and beliefs.
Prior to the recognition of informed consent as an affirmative legal right in several states beginning in 1972, and before the development of patient-centered care, the philosophy of "doctor knows best" applied in physician-patient relationships. The average patient, and particularly the average woman, was considered too uninformed to contribute anything to medical decision-making. The doctor's presumed superiority in knowledge and his good intentions trumped any obligation to ensure the patient's understanding of, let alone full consent to, whatever the doctor deemed in the patient's best interests. Sound familiar? It continues to reflect many physicians' comfort zone in patient interactions, and persists in much of medical care where states haven't intervened with specific statutory directives.
In contrast, the relatively modern concept of informed consent is a communication process between health care provider and patient and must involve at least two components: the provision and discussion of information, and the patient's act of consent. Failing to object to a procedure is not informed consent.
The Patients Bills of Rights that were adopted in the 1980s and 1990's, paralleling in many respects the philosophy of the Denver Principles and the patient-centered HIV testing laws that developed over the same period, had both supporters and opponents in the medical community. The ongoing battles to eliminate patient protections from state HIV testing laws track some of those earlier debates.
There are physicians who continue to support a patients' right to understand and take part in HIV testing and care decisions; Kaiser Permanente, the second largest provider of HIV-related care in the country, and the Association of Nurses in AIDS Care, are two such examples. On the other hand, much of the medical establishment, as in the past, oppose informed consent, and even the documentation that consent was provided at all.
If one accepts HIV testing as a gateway to care, and patient health literacy and engagement in treatment as central to that care, then one might think that counseling and communication that breaks down mistrust and misunderstanding at the time of HIV testing is vital. Even the CDC acknowledged that in an opt-out testing program in Arkansas, more than 15% of pregnant women tested didn't even know that an HIV test had been conducted. At the same time, the most impressive statistics on HIV testing uptake over recent years comes from New York, a state that has kept written, informed consent on the books. Here also, where counseling and written consent still must precede HIV testing of pregnant women, prenatal testing rates are near 100% and perinatal HIV transmission is rare.
So with no evidence that documented informed consent is a barrier to pregnant patients' testing -- indeed, there is evidence that informed consent increases prenatal testing rates and alleviates fears and mistrust that many patients report in their health care experiences -- why the persistence and energy in eliminating this nonexistent barrier?
If many health care providers, notably the nurses who draw the bloods and counsel patients, see counseling as part of patient care, then why the rush to change policies to suit the lowest common denominator? Are improved testing rates and ending the epidemic really served by accommodating providers who believe that patient counseling requirements are a waste of a professional's precious time, rather than accommodating the patient with fears and misconceptions who needs information and is empowered by respectful care?
It's worth noting that greater than 99% of pregnant women screened for HIV will test HIV-negative. Meanwhile, 100% of pregnant women are at-risk for HIV because of unprotected sex. A short pre-test educational session can ensure women of child-bearing age learn the facts about HIV/AIDS as well as the strategies they need to remain HIV free. And, provided the facts of the benefits of HIV testing for themselves and their children, the vast majority of women will voluntarily accept testing.
Asking pregnant patients to consent to HIV testing is not a burden. With patients required to fill out and sign a multitude of forms -- HIPAA, release of records for insurance purposes, etc. -- why is it acceptable to eliminate a process and form that exists to benefit the pregnant patient, in order to accommodate doctors who for the most part don't offer the tests anyway? Is it based on a belief that the less women know or are told, the less likely they are to object to testing? Is it because it makes involuntary testing easier by making it nearly impossible to prove, putting the burden on the pregnant patient to argue against what her doctor has already drawn blood, and stated an intention, to do? Is it in any way connected to the race and economic status of those women who are disproportionately affected?
A number of those in the AIDS and medical establishments see these questions as besides the point. These women are better off knowing their HIV status. If these women know their status, even if the testing is a little coercive, it will help prevent further transmission, and allow them to start treatment for themselves and their potential offspring. A reasonable, responsible woman would choose testing, and all of the explanations and the technicalities of consent get you to the same place, so what's the difference?
The answers likely hinge on one's view of whether good intentions ethically warrant the imposition of healthy choices on people rather than allowing them the autonomy to choose, or fail to choose, what the professionals, or they, think is best for them.
The view that such interventions are justified, I believe, misses, forgets or severely minimizes the experiences that led to the Denver principles, the patients' bill of rights, and HIV testing legislation, all of which are far more modern than the centuries-old "doctor knows best" approach that the medical establishment is battling to extend to HIV care.
It also overlooks a significant part of what drives the HIV epidemic to this day. Namely, that women and people of color and gay men and poor people of every stripe have been marginalized and left vulnerable by a society, including the medical establishment, that has demeaned them and encouraged the powerlessness and invisibility that in fact drives people to take risks because their selves are worth less.
And so the real outrage, and irony, is that apparently not one person stood up for a woman's right to dignity and autonomy, and that the only correct vote on SB-179 was cast by an ignorant bigot for all the wrong reasons.
If any of you agree with my take on this, it would be great if you let our so-called friends in the Colorado state legislature know. The bill is now before the Colorado House Health and Human Services Committee -- it's 11 members are: Representatives Jim Riesberg, Chair; Sara Gagliardi, Vice-chair; Cindy Acree, Cheri Gerou, Gwyn Green, John Kefalas, Jim Kerr, Anne McGihon, B.J. Nikkel, Dianne Primavera, Spencer Swalm.
Contact info for these legislators is located at www.leg.state.co.us/Clics/CLICS2009A/csl.nsf/directory?openframeset.
This article was provided by The Center for HIV Law and Policy. Visit their website at www.hivlawandpolicy.org.
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