"Baby AIDS," Mandatory Newborn Testing, And Preventing Mother-To-Baby Transmission Of HIV

Right-wingers are attacking Democrats for scuttling “the Ryan White Early Diagnosis Grant Program,” or as they often call it, the “baby AIDS” bill. Why are liberals against helping babies with AIDS, they cry? Isn’t helping AIDS babies something we can all agree on? (See these links, for example: 1 2 3 4 5 6 7 8). This outpouring of “baby AIDS” related anger is being led by the Family Research Council’s Joe Carter, who sent a mass email-mail that virtually all the above-linked bloggers are cribbing from.

Of course, none of this is as simple as conservatives claim.

In fact, the bill Carter is so angry about is almost entirely irrelevant to HIV prevention; the mandatory newborn testing Carter favors is useless for telling us if newborns are HIV positive, is overly controlling of mothers, and will do almost nothing for preventing HIV transmission; and virtually all the effective policies for reducing mother-to-child HIV transmission involve improving the effectiveness and availability of prenatal care.

1) The omnibus bill Carter is angry about has almost nothing to do with HIV prevention.

The specific legislation that set Joe Carter and the FRC off is an omnibus legislation intended to eliminate dozens of so-called “earmark” programs. In order to prevent the anti-earmark bill from having dozens of anti-anti-earmarks hanging off of it, the Democrats decided to accept no amendments at all, on any subject, to the anti-earmark bill. The no-amendments provision doesn’t seem like an unreasonable approach to an anti-earmark bill, and it certainly has nothing to do with the Democrats being against AIDS prevention funding.

(For further discussion of this aspect, read Kevin Keith’s arguments in the comments of Evangelical Outpost.¹ )

2) Mandatory newborn testing can’t tell us if newborns have HIV. It can only tell us if mothers have HIV.

It’s important to understand that HIV-testing a newborn doesn’t tell us if the newborn is HIV positive. For the first 18 months of life, infants who aren’t infected with HIV will nonetheless test as HIV-positive if their mother was HIV positive while she was pregnant. (This happens because anti-HIV antibodies, which is what the standard test looks for, are transmitted from mother to child in the womb. Source.). 75% to 85% of infants who “test positive” for HIV do not have HIV.

There is a newer test which tests for HIV virus in the baby, rather than just testing for antibodies. However, this test is only 33% accurate on a newborn; it’s not until a baby is two months old that this test becomes 90% accurate, and not until six months that it’s 95% accurate. (Source).

So there’s no effective way of finding out if a newborn baby has HIV. What testing the babies actually provides is a way of finding out if the mother has HIV. “Newborn” testing avoids the sometimes uncomfortable and slow work of getting a mother’s informed consent for HIV testing — by testing for the mother’s HIV status indirectly. It’s about avoiding the need for the mother’s consent. As Senator Tom Coburn, the leading proponent of mandatory newborn testing, say: “If they didn’t want to be tested, their baby was tested.”

Labor, childbirth and the hours immediately after birth is the time when a mother has the least choice about being in the hospital, and about submitting herself and her baby to medical tests; it is therefore the time that conservatives have been most eager to test women for drugs and for HIV. With a mandatory newborn testing law, there’s no need to muck about with counseling and informed consent and all that; you just do the test, wam bam no need for thanking you ma’am.

3) Mandatory newborn testing is mostly worthless for preventing HIV transmission.

The FRC’s Joe Carter asks “what could possibly be more important than preventing babies form contracting HIV/AIDS?” But the only controversial part of the Ryan White Early Diagnosis Grant Program is mandatory newborn testing — and mandatory newborn testing is mostly worthless for preventing mother to child transmission.

Consider this real-life story from The Body, an advocacy group for people with HIV and AIDS. Rosa, a 27-year-old mother, lives in New York. (New York’s mandatory newborn testing program is often cited by advocates as a success story). When Rosa found out she was pregnant with her second child, she went for prenatal care and counseling, and was counseled about the importance of breastfeeding. But at no point was she counseled about HIV or advised to get tested. Six weeks after giving birth to her daughter, the hospital called Rosa.

A phone call summoned her to the mental health division of the hospital. There, during a meeting that lasted less than fifteen minutes, she learned that her daughter had been tested under New York State’s mandatory newborn HIV testing program and that her results were positive.

No one had informed Rosa ahead of time that her daughter would be tested. No one informed Rosa now what the results of the test meant. It was only later, through her own research efforts, that Rosa learned that the temporary presence of the mother’s viral antibodies in a newborn’s blood means that all infants of HIV-positive women will test HIV-positive at birth. It was only later that she learned that only 15 to 25 percent of these newborns will themselves be infected by the virus. It was only later that she learned that screening newborns for HIV antibodies reveals the HIV status of the mother, not that of the infant.

Rosa immediately told her boyfriend about the test results. A few weeks later, however, a visiting nurse who came to the apartment when Rosa was not at home implied to the boyfriend that Rosa had known her status before her daughter’s birth but hadn’t told him. When Rosa got home, her boyfriend beat her up, forcing her and her children to leave her apartment and stay in a shelter for several days.

“I definitely would have tested prenatally if anyone had asked,” says Rosa. “If I had known earlier, I would have planned. I probably would have taken AZT because I would have wanted to increase the chances that my child would not have the virus. I would never have breastfed.”

Does anyone believe that New York’s mandatory testing program did a good job of reducing Rosa’s odds of transmitting HIV to her daughter?

By definition, testing newborns happens too late to prevent most mother to child transmissions. Serious efforts to prevent mother to child HIV transmission have to be prenatal, before the virus is transmitted. And that requires working with mothers, not bulldozing over them. The good news is, prenatal testing and treatment have already been successful at vastly reducing mother to child HIV transmission nationwide. So why do we want to take $30 million dollars away from existing programs (which are already critically underfunded) and give it instead to programs that include mandatory newborn testing — a “prevention” effort that’s guaranteed not to be very effective?

Supporters of mandatory newborn testing often claim that such programs have worked miracles preventing HIV transmission, usually citing New York as an example. But there have been enormous improvements nationwide, not just in New York and other states with mandatory newborn testing. According to a CDC factsheet on mother-to-child HIV transmission, “Over the course of the epidemic, the number of perinatally transmitted AIDS cases has decreased dramatically. The number of infants infected with HIV through mother-to-child transmission decreased from an estimated peak of 1,750 HIV-infected infants born each year during the early to mid-1990s to 280–370 infants in 2000 (CDC, unpublished data, 2000). This decrease is largely due to the use of antiretroviral therapy during pregnancy and labor.” (Emphasis added).

4) What we should be fighting for.

• Prenatal care for all pregnant women.
• Information and counseling on prenatal HIV testing for all pregnant women, and on pregnancy, childrearing and HIV for HIV positive pregnant women. These should be available in a variety of languages and designed for a variety of cultural backgrounds.
• Free anti-HIV drugs for all HIV positive pregnant women (and all HIV positive people, but that’s a topic for a different post, I suppose). Being treated for HIV drastically reduces the chances of a mother transmitting HIV to a child in the womb or during childbirth – from around 20% to less than 2%. (For those who are interested, here (pdf link) is a detailed discussion of the medical issues.)
• Attention to the economic and other issues that often prevents women, especially non-white, immigrant, or low-income women, from getting adequate prenatal care. This is too large a topic for this post, but issues to be considered include low-cost transportation, language and cultural barriers, how difficult it is to get prenatal care outside of regular working hours, childcare for mothers expecting new children, and the impact of abuse. This may sound like a grab-bag of irrelevant issues, but in fact it’s a central issue: Readily available prenatal care is the number one way we can prevent mother-to-child HIV transmission.
• A model of medical care that assumes that all women — including women with HIV — need to give informed consent for all medical treatment and tests.

Sources/ Further reading:

HIV Infection in Infants and Children
Whose Virus Is It Anyway?, from The Body
Routine Testing Must Include Informed Consent
Mother-To-Child (Perinatal) HIV Transmission And Prevention (CDC factsheet)
Striking A Balance: HIV Testing For Pregnant Women And Newborns

1. From one of Kevin’s comments:

   HJRes20 is the omnibus “anti-earmark” bill. As many people have noted, getting rid of “earmarks” is harder than it looks, because there is no legal distinction between an “earmark” for “pork-barrel spending” and an ordinary appropriation for an ordinary program. But both parties have declared they are going to do something about “earmarks”.

   The approach they have taken is to submit a huge bill that comprehensively strikes out hundreds – possibly thousands, there were too many for me to count – of targeted allocations for named programs. The same bill stipulates specific levels of funding for different departments, and in some cases specifies that that funding should be used in certain ways.

   …The bill is an attempt to clear the decks of the thousands of small allocations for individual projects, in order to start a systematic attempt to decide what should or should not be funded. Along the way, a huge number of specific funding initiatives – most of them probably reasonable – have been undone. (Note that this does not mean that these programs will not get funded, or that the money will “just sit there”. It means that all those funding decisions will have to be revisited, hopefully with greater oversight. Every single one of the rescinded “earmarks” could be funded if Congress chooses to do so, even after passing this bill.)

   So what’s up with the Baby AIDS program? It is one of the hundreds of line items that is being taken out of the budget.

   Why are the Democrats holding it up? They’re not. A Republican member attempted to re-insert a specific earmark for that program in the bill designed to eliminate earmarks. Reid has said he will not allow specific programs to be exempted. I don’t think Reid has said anything about the Baby AIDS program – just that he wants the entire earmark bill dealt with at once, and not a bunch of earmarks on the earmark bill.

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