Chicago Tribune - January 20, 2006
By Judy Peres, jperes@tribune.com and Maura Possley, mmpossley@tribune.com

The bill, approved Thursday by the House Human Services Committee, has the support of the Illinois Department of Public Health. That's an about-face for the department, which did not support mandatory testing in 2003. That year the legislature passed a voluntary testing program to prevent the transmission of HIV, the virus that causes AIDS, from pregnant women to their infants.

Dr. Ram Yogev, a pediatrician at Children's Memorial Hospital and leading advocate of mandatory testing, said it's critical to know whether a newborn has been exposed to HIV because starting drug treatment immediately after birth could prevent at least two Illinois babies a year from becoming infected.

"There's a very small number of children for whom this [mandatory testing] is the last chance," Yogev said, but "who are we to decide how small a number is too small?"

Opponents argue that informed consent to testing is the cornerstone of all AIDS prevention efforts, since a positive test can lead to lifelong stigma and discrimination. Testing newborns could inadvertently divulge the HIV status of thousands of women a year against their will.

"When you test a newborn, you're only testing for the mother's antibodies," said Ann Fisher of the AIDS Legal Council of Chicago, explaining that it takes months for babies to develop their own immune system. "This makes a mockery of the whole notion of voluntary testing for pregnant women."

Yogev said Illinois already requires testing of newborns for genetic and metabolic disorders. But AIDS activists said HIV has a unique stigma on the child and the mother.

The federal Centers for Disease Control and Prevention guidelines say HIV testing "should be voluntary and free of coercion." Only two states, New York and Connecticut, require testing of infants.

The rationale for voluntary testing, according to the CDC, is to preserve a woman's right to decide what is in her best interests and to ensure a trusting relationship with her doctors so both she and her baby can receive optimal care.

A 2003 Illinois law calls for all pregnant women to be counseled about HIV and offered a blood test. If the woman's HIV status is not known when she delivers her baby, the newborn is given an HIV test; but the mother has the right to refuse testing for herself and her child.

All sides agree that program has been extraordinarily successful. Currently, 98 percent of Illinois mothers know whether they have HIV before they leave the hospital, up from 72 percent at the start of the program in August 2004. In Chicago, more than 99 percent of new mothers have been tested for HIV.

There were 13,205 deliveries in Illinois last month, according to testimony presented to the House committee by the task force monitoring the voluntary program, Perinatal Rapid Testing Implementation in Illinois.

Of those, only 260, or 1.9 percent, went untested. In Chicago, where HIV is most prevalent, only eight of 2,751 infants born in December, about 0.2 percent, went untested.

"The system is working pretty well," said Anne Statton, director of Pediatric AIDS Chicago Prevention Initiative and a member of the task force.

But some doctors and state officials believe it isn't good enough if even one baby falls through the cracks. The new bill, proposed by state Rep. Mary Flowers (D-Chicago), would force hospitals to run blood tests on all newborns whose mother's HIV status is unknown, whether or not the parents consent. The only exception would be if the mother objects on religious grounds.

Her legislation, Flowers said, is "about saving the infants who do not have a voice."

Each year, about 180,000 women in Illinois give birth. If 2 percent of them failed to get HIV tests, 3,600 babies would be forcibly tested; seven would likely test HIV-positive. Treating all seven babies for the first six weeks of their lives could prevent two or three from developing HIV, according to Yogev.

Tom Hughes, deputy director of the state's Office of Public Health, said Yogev had persuaded him.

"We have a moral responsibility to eliminate HIV where we can," Hughes said.

Asked about the conflict between the mother's right to privacy and the baby's right to be screened and treated, he said, "I think you have to resolve that dilemma in favor of quality of life for the infant."

The bill's chances of passage are unclear. Although the vote in committee Thursday was 9-3, committee members asked Flowers to hold it for additional changes.

State Rep. Elizabeth Coulson (R-Glenview) said she would vote for the bill even if it mandated testing. "I can't imagine a mother not wanting her child tested," she said.

State Rep. Larry McKeon (D-Chicago), a longtime opponent of mandatory testing, conceded it would be hard for legislators to vote against saving babies. He said the current law was working.

Cathy Gray, who runs the perinatal network at the University of Chicago Hospitals, agreed. "We've made such strides," she said. "We're moving toward 100 percent compliance. We need to let it work a little longer."

Gray said mandatory testing would alienate new, HIV-positive mothers and destroy their trust in the health-care community just when they need help most.

David Munar, director of the AIDS Foundation of Chicago, was concerned that mandatory testing would give busy health-care workers an incentive to skip the time-consuming counseling and education that are required by the 2003 law.

Eva Powell, a suburban mother living with HIV who testified against the bill last week, said: "I really believe mandatory testing will only perpetuate the stigma and discrimination around HIV and AIDS. If people hear doctors and lawmakers talking about mandatory testing, they'll think 'maybe this is something I should be scared of,' rather than 'maybe this is something I should learn more about.'"

Statton said a possible compromise would be to drop mandatory testing in favor of a measure that would make it easier to agree to the test. The current law says pregnant women have to sign a consent form before they have an HIV test. Under the compromise, health-care providers would test them automatically unless they opt out in writing.

An estimated 300 babies nationwide are born each year with HIV.
060120
CT060103

Always watch for outdated information. This article first appeared in 2006. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 2006. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .