Patricia Nell Warren

Reality vs. Ideology: A Closer Look at HIV Testing for Pregnant Mothers

Filed By Patricia Nell Warren | March 15, 2009 2:00 PM | comments

Filed in: Living, Politics, Politics
Tags: CDC guidelines, pregnant women should be tested for, screening for mental illness, universal HIV testing, universal STD testing

Recently Bilerico aired the Colorado Senate's hot debate over SB 179 and HIV testing of pregnant mothers. Both parties focused on ideology. A lone wing-nut Republican voted against the bill, insisting that it promoted "sexual promiscuity." But Democrats and Republicans who voted for the bill were busy doing their own posturing. To them, the bill is about "saving the unborn baby."

As the bill goes before the Colorado House Health and Human Services Committee, debate continues. Yet this question of pregnant mothers, and how their health affects their unborn babies, goes way beyond testing for HIV. So do cost issues involved. SB 179's sponsors insist that the bill will have "no fiscal impact," since testing is already covered by standard care under Medicaid.

But...HIV testing of pregnant mothers will have a national fiscal impact, as I will show. So will all the other moters' testing that is being demanded. Is the financially devastated U.S. ready for it? Ready for the truly awful choices that we are already having to make about who to "save," because of budget shortfalls? The gap between ideology and reality is pretty wide here.

For many years, public-health talking heads have alleged that testing and early treatment of an HIV+ mother and child is more "cost-effective" than treating advanced HIV disease later on. Typically optimistic was a 1993 World Bank report, which looked at 4 million live births per year and an estimated rate of 1.9% of U.S. women testing positive. The Bank quoted a single test cost of $79 as part of its figures, and concluded, "This equates to an annual cost of approximately US$ 318 million. In the context of health expenditures in the region of US$ 690 billion per year, this appears affordable."

But the World Bank evidently wasn't factoring the cost of overhead, nor the pre-test counseling that is required.

Pregnant women who get routine healthcare are already tested for a long list of items ranging from blood type and TB to PKU. But I've been looking at current real-life costs of all the additional testing that is now being demanded, and suspect that the national total will be staggering.

Reality of What the Feds Require

Updated federal guidelines recommend that all Americans between ages 13 to 64 get HIV tests as part of routine healthcare. They recommend further that all pregnant women be offered the test when they arrive at the hospital for delivery, if they have no test history. Testing is still voluntary. But if a woman's HIV status is unknown at labor (and that could include situations where she has opted out of testing), her baby must be tested. The latest guidelines suspend earlier requirements for pre-test counseling and written consent -- a cost-saving measure, apparently.

CDC faces the fact that it probably costs Americans $ 1 billion a year just to identify what the CDC estimates as 100 to 200 HIV+ babies born every year, as per their 2007 surveillance figures. At 200 babies, that is $5 million per baby per year.

So, to justify their demand for universal testing, public-health academics have come up with sophisticated calculations around the old cost-effective arguments -- insisting that the cost of testing and treating X number of pregnant women and babies must be balanced with savings down the road, measured by not having to treat advanced disease and what they call "quality-adjusted life years." The idea is that later savings will hopefully equal the present expenses, creating a break-even point where the U.S. gets back the money it invested in testing. . But there is a big flaw in the cost-effective argument: the national bill for testing has to be choked on the front end, with the hoped-for savings coming only years later, on the back end.

So these calculations may be illusive. Three years ago, one expert who sounded a warning about this was Dr. Judith Auerbach, vice president of public policy and program development of amfAR. Ms. Auerbach said: "The question of who will pay for all this has not been answered by the very governmental agencies and policymakers who are advocating for increased HIV testing and diagnosis."

Human-rights activists deplore the CDC's recommendation that pre-test counseling and written consent be dropped. They continue to protest that pressuring a woman to be tested invades her privacy and her right to make medical decisions, not to mention the possibility of exposing her to AIDS stigma if she tests positive. Many women may avoid prenatal care in order to avoid testing, as well as mandated treatment if they are found positive. There are still questions about the safety of AIDS drugs for mothers and children, as the pharmaceutical industry continues to reel under escalating revelations about dangerous side effects of some drugs that some corporations tried to hide. Even the advocates of treatment now admit that there are risks, though they insist that the benefits outweigh the risks.

But the juggernaut of legislation is rolling forward anyway -- states are moving to conform with CDC guidelines, and many have HIV laws like the one being considered by Colorado. According to a Kaiser Permanente table, many states have opt-out testing of pregnant women, while most have opt-in (meaning that women won't be offered the test unless they actually request it). Ten states mandate newborn testing if the mother opts out.

Reality of STIs

But -- and here is where costs start to get even scarier -- CDC guidelines now recommend that pregnant women be screened for sexually transmitted infections as well.

Some years previously, AIDS science had put out the word that STI infection can contribute to, or be exacerbated by, HIV infection. When this CDC recommend gets translated into state law, there's no opt-out allowed. Forty-six of the 50 states mandate prenatal syphilis screening. Some also require hepatitis B testing, though states have been slower to add screening for other STIs. Colorado's SB 179 will modify its Statute 25-4-201, which already requires screening for one STI -- syphilis.

According to the CDC, "The harmful effects of STIs in babies may include stillbirth, low birth weight, conjunctivitis (eye infection), pneumonia, neonatal sepsis (infection in the baby's blood stream), neurologic damage, blindness, deafness, acute hepatitis, meningitis, chronic liver disease, and cirrhosis."

Even herpes simplex can be fatal. As I wrote this commentary, headlines aired the case of an English newborn who died of an HSV infection transmitted from the mother by kissing. Some anti-herpes drugs can have dangerous side effects for pregnant women. But, given the fact that 1 in 4 pregnant American women now have genital herpes, some medical authorities continue to insist that herpes testing be done.

Not surprisingly, few of the talking heads are pointing to the costs of escalating demands for testing all mothers.

Some Real-Life Figures on Testing

According to the American Pregnancy Assn., around 6 million American women are pregnant every year. Those result in 4,058,000 live births. A certain percentage of the 1.9+M women who later lose their pregnancies will receive prenatal care before doing so, so for drill I'll use an arbitrary estimate of 5 million pregnant women whose testing could happen.

Real-life figures of large-scale HIV testing can be found. In 2002, Massachusetts committed to CDC's guidelines. The program was funded by the MDPH AIDS Bureau (which gets federal funding). Overall cost of the program: $349,400 for one year. 10,025 people were offered the test, and 68 percent of them opted out. During that year, 3,068 people were screened, with 60 (2 percent) testing HIV+. Cost: $119 per person. This also amounted to $5,823 for identifying each of the 60 new HIV cases identified. So, going by the Massachusetts yardstick, the national cost of testing 5 million pregnant women could hit $595 million a year.

Medicaid accounts for possibly one third of pregnant women's tests. In recent New York State billings to Medicaid for the initial test and pre-test counseling, the real-life bill per person was $199. That billing, when stretched across 5 million pregnant women, would be just short of $1 billion a year.

If the cost of STI screening is added -- say, a 7-test panel covering HIV, syphilis, gonorrhea, chlamydia, herpes, hep B and C -- the cost would balloon higher. Labs advertising on the Web are billing such a multi-test panel as high as $450. Five million pregnant women x $450 comes to $2.25 billion. That looms pretty large compared to the $17 billion that President Bush's last budget spent overall on domestic AIDS in 2008. And that doesn't include the cost of counseling -- just the lab results.

Yet, according to some recent reports, Medicaid often cuts corners on STI testing. Several years ago, in a paper published in Health Affairs, titled "Medicaid Managed Care and STDs: Missed Opportunities to Control the Epidemic," the investigators found that often the cost of screening was the reason why a particular guideline on treating STDs was ignored.

Can Women Opt Out?

Some critics of my cost caveat will say, "Okay...but states have opt-out or opt-in provisions. Meaning that not every one of those 5 million pregnant women will actually be tested. Estimates are that 30-50 percent will opt out. This will result in a far lower nationwide cost."

But I question whether the HIV opt-out window will remain open for much longer. Public-health scrutiny of pregnant women is intensifying and getting very punitive. Indeed, mothers face a growing "nanny state" attitude by legislators who focus on "protecting the unborn," often at the cost of the mother's rights.

Many state legislators are talking about mandatory screening for a laundry list of additional substances that are "harmful to babies." Minnesota screens for blood lead. South Carolina is infamous for its punitive attitude on pregnant women who use illicit drugs. Tennessee is considering a law to require mandatory smoking and alcohol screening. Kaiser Permanente advocates that this kind of substance screening be made as routine in prenatal care as HIV testing.

Some medical authorities insist that pregnant women also be screened for the following medical conditions -- at a varying but additional cost per woman: Down Syndrome ($700); fragile X chromosome syndrome ($240); Group B streptococcus ($28), gestational diabetes ($75-$85), and hypothyroidism (two types of tests, ranging from $3,500 to $18,000). Taking the lower figures, these five tests would total $4303 per woman. Multiplied by 5 million, they total $22.7 billion a year.

Scariest "nanny state" trend: the Mothers' Act (S. 3529), which has been quietly introduced in Congress. It will mandate the screening of all 4 million+ new mothers for post-partum "psychosis," requiring that those who fail the test be referred for treatment with antidepressants. What the Mother's Act will cost, per woman per year, can only be estimated (I can't find any figures), but most of it will get done through Medicaid. The Mother's Act is linked to another federal mandate, Teen Screen, for testing all 5 million U.S. schoolchildren under 18 for "mental illness." States are busy complying with Teen Screen, and the government would be buying all drugs for treatment -- an absolute bonanza for the pharma industry, which explains why the pharmas were involved with creating this "mental health" initiative from its very beginnings.

My point is: the Mother's Act has no language for women to opt out. If it is signed into law (and President Obama's position on national mental health will make this pretty likely), then pregnant women will likely lose their right to opt out of HIV screening.

Will the Taxpayers Pay?

As we've seen, combined HIV/STI screening of 5 million pregnant women could run the country into around $2.25 billion a year. Add the cost of testing for Down Syndrom et al, and the cost jumps to $25 billion a year -- more if we add substance screening for smoking and alcohol et al. If we add "post partum psychosis," the testing cost will surely soar into the higher billions.

Much of this testing would be supposedly covered by Medicaid -- yet cash-strapped states are already slashing desperately at Medicaid. In California last year, the legislature was so desperate to trim the budget that it cut Medi-Cal reimbursements by 10 percent, in spite of loud protests from patient-advocate organizations that many deaths would result. In other words, money is so scarce that some people's lives are saved by bureaucratic decisions that are, in effect, death sentences -- since they deny vital healthcare to other people -- seniors, perhaps, or low-income people with special medical needs -- and result in their deaths.

It's easy to see the craziness that America is now mired in, the tragedy of economic triage, as the imperatives of ideology clash with the ugly reality -- "what we should do" versus "what we can't do."

Some pregnant women will be covered by private insurers. California recently passed a law requiring private healthcare plans to pay for routine HIV tests (STI tests are evidently not included). But increasing the burden for private insurers will drive up premiums for everybody, and taxpayers won't be happy about that. Meanwhile many pregnant women (especially low-income women of color) are among the estimated 1.6 million U.S. females who are uninsured. Shortly after taking office, Obama covered this base -- he signed the State Children Health Insurance Program (SCHIP) bill, which had languished in Congress for years (Bush vetoed it twice). SCHIP has a clause extending coverage to uninsured low-income pregnant women.

Either way, taxpayers will be paying for all this expanding testing of pregnant women - either in higher insurance premiums, or in higher taxes. Are we willing -- and able -- to shoulder that extra burden?

Ironically -- even with all the feverish urgency around surveillance of mothers' health and social habits, our shoddy, collapsing, patched-together healthcare system isn't working for them. The U.S. ranks 33rd in the world on infant mortality -- even developing countries like Cuba are higher on the list than we are. As Colorado's SB 179 festers in the House, we need to be thinking about all this.

Further reading:
Table of state-by-state parameters for HIV testing

Patricia Nell Warren writes a monthly column on AIDS politics for A & U Magazine.

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Hmmm on the impact this has, Patricia again what an eye opener article.

Rick Elliott | March 16, 2009 1:54 AM

I know I'm not up to date on gestational concerns, but it seems that once the HIV+ mother is pregnant the child is infected also. HIV is spread by bodily fluid exchange. I can't imagine more bodily fluid exchange than that of a mother with her fetus. If my assumption is correct, it seems the whole point of testing is a matter of anyone who could be exposed getting tested.

Robert Ganshorn Robert Ganshorn | March 16, 2009 6:27 AM

Actually Elliott there are drugs that can be given the mother to prevent transmission of HIV to the fetus if done early in the pregnancy. That is what makes the screening so important.

Rick and Robert, this is a complicated subject, which is why there has been so much controversy about it. Even the CDC admits that "much work needs to be done yet." I encourage you both to read up on it if you're concerned.

Testing and treatment are not a slam-dunk. Testing a newborn with the rapid antibody test doesn't always give you an accurate result, since the baby is still loaded with its mother's antibodies. Which is why several other tests may often follow the initial test. Treatment (usually AZT, these days) does not always work magically in every individual, which is why the language of treatment advocacy is always hedged, saying that it "reduces" the risk of developing serious disease.

AIDS stigma is still a huge problem, especially for women in the black and Latino communities, which is why many of them seek to avoid testing and treatment. Treatment advocates are also wrestling with the growing problem of drug-resistant strains of HIV, which are now proliferating. Which is why one of the confirmatory tests is to look for drug resistance. Nevirapine, once a drug of choice, is now out of favor because even the single dose once recommended at birth was found to prompt drug resistance.

There ARE documented problems with side effects -- AZT and nevirapine are powerful and toxic drugs that carry "black box" warnings, so even adults can develop severe or fatal side effects. There are still unanswered questions about how these drugs affect the systems of newborns and very young children...which is why treatment advocates are careful to say that they believe the benefits outweigh the risks.

Right now HIV drug research is focusing on clinical trials involving children, which have generated their own controversy, because of the toxic nature of the drugs, and because of documented scandals around the manner in which some trials have been run (for instance, using system children from group homes, which is in direct violation of federal regulations barring the use of such children in medical experiments.

All these piled-up questions have resulted in a wide concern -- even in many state public-health agencies -- to protect the mother's right to written informed consent and to opt out. Which is why the CDC's recent decision to stop recommending counseling and written consent is a jolt, because state laws require that women must be counseled and informed when the test is offered and she must consent in writing. The CDC change puts federal law at odds with state laws.

With all the piling-up of testing requirements for other diseases, you can see how complicated treatment is going to get...because it isn't safe to pile so many treatments on a mother and baby.

Either way, taxpayers will be paying for all this expanding testing of pregnant women - either in higher insurance premiums, or in higher taxes. Are we willing -- and able -- to shoulder that extra burden?

It's an interesting question. A lot of the testing is already happening and already being covered, and a lot of the proposals you mention aren't going to be passed, and definitely not at the federal level. I doubt post-partum depression or down's syndrome will become part of national, mandatory health screenings. Or alcohol or tobacco, for that matter.

But what's interesting about the question is how little we ask it. An optional war with a country that wasn't going to attack us? Asking that question is unpatriotic. Bailing out failing banks with no strings attached funds? There's no time to ask that question. Giving tax cuts to wealthy people? No one in the media with prominence is willing to ask that question (for obvious reasons, since they're usually a part of the "wealthy").

HIV screening for poor pregnant women? Well, now, hold your horses! Let's not get too crazy with the spending here!

I'm not saying that everyone who questions the costs of these sorts of things is inconsistent in their questioning, but when the Congressional debate happens on these sorts of tests, the right will predictably use the "costs" (quotation marks since I'm already expecting Republicans to lie to inflate the numbers) as a reason not to fund health care reform, even if it's a fraction of the costs that they previously approved.

I know that in France, 4 medical visits are required by pregnant women, and it includes a whole lot of testing as well. People generally understand the need for STD testing, and with a government that's willing to negotiate prices with the pharmaceutical industry, it's more cost-effective than in the US, which is part of why they pay less than half per person for medical care than Americans do. There are ways to have these tests and keep costs down if we're willing to do them.

Either way, though, the way we debate funding in the US is too messed up to rely upon a "Should tax payers shoulder this burden?" argument. Considering how far below the highest marginal tax bracket is today compared to where it was between the Roosevelt and Nixon presidencies, there's no reason to assume that raising that bar will hurt America.