Earlier this year, the Centers for Disease Control announced that reports of new HIV infections and AIDS cases had risen for the first time in a decade. About half the new HIV infections occurred in women. Given that 80 percent of HIV positive women are of childbearing age, this data has prompted a number of states, including Indiana, to consider whether to require HIV testing for all pregnant women.
Although only 1 percent of new HIV infections in Indiana occur in infants, the vast majority of pediatric AIDS cases are caused by transmission from the mother to the child during birth, or through breastfeeding. The Indiana State Department of Health reported 45 cases of pediatric HIV infection or exposure to HIV in 2000. In an effort to lower that number, Rep. Peggy Welch (D-Bloomington) introduced a bill to mandate HIV testing for pregnant women in Indiana. SB 1630 represents the bill's third incarnation in recent years; it was unanimously recommended for passage by the Senate Health and Provider Services Committee last week, and will likely become law in July.
The current bill would change Indiana's HIV testing policy from a voluntary "opt-in" policy to an "opt-out" approach, under which pregnant women will be tested unless they refuse; a woman's refusal would be documented in her medical records, and on the confidential section of her child's birth certificate. The CDC has recommended that states adopt an opt-in approach, in order to "preserve women"s right to participate in decisions regarding testing and to ensure a provider-patient relationship conducive to optimal care and support."
The Indiana Civil Liberties Union has expressed concern over mandatory HIV testing bills on the grounds that the practice infringes on women's civil liberties. "Everyone agrees that it's a good idea for people to get tested," says the ICLU"s John Krull, "but if you make it mandatory, it often chases women away who are part of the most threatened population. Thinking women ought to be concerned any time the state decides to assert that it has proprietary rights over women's bodies or their choices." The ICLU does not plan to actively oppose SB 1630.
The Indiana Minority Health Coalition has opposed past versions of SB 1630, concerned that low-income women would be cut off from HIV treatment once they gave birth. The IMHC pushed for stronger language on treatment and counseling, and supports the current bill. "Testing alone does not equal prevention," cautions IMHC President Stephanie DeKemper. "What we hope will happen is that as women are talked to by their healthcare providers, they will better understand what puts them at risk for HIV, and feel empowered to make better decisions in the future."
It remains unclear how effectively the new policy will be implemented among minority women. According to the ISDH, just 63 percent of black women in Indiana receive adequate prenatal care. "Minority and low-income women may not receive the type of care we envision," DeKemper says. "The bottom line is that a provider"s cultural beliefs and biases will impact the counseling women receive, and who will and won't be advised they can opt out."
Supporters of the mandatory testing approach, including Dr. Elaine Cox, a pediatric HIV/AIDS specialist at Riley Hospital, argue that it will remove the stigma associated with HIV testing, and reduce transmission to infants. "[Under the current law] you're asking a doctor to assess something you can"t tell by looking, so what happens is that groups that have been identified as being high risk populations are more likely to get counseled and screened," Cox says. "[HIV infection] can occur in any group, at any time. There wouldn't be any discrimina tion under this law." According to Cox, 25 to 30 percent of women with undiagnosed HIV will transmit the infection to their children during or after birth; with diagnosis and interventions, including treatment with an AZT regimen and delivery via caesarian section, the risk of transmission can be reduced to 1 percent.
If a woman refuses HIV testing, the bill allows the attending physician to order testing of the baby within 48 hours of delivery, unless the mother objects "for reasons pertaining to religious beliefs." The bill requires that eligible women and infants who test positive for HIV be immediately accepted into Medicaid, CHIP, the AIDS Drug Assistance Program (which already has a waiting list of more than 70 people) and other services.
Welch believes the testing program will save the state money in the long term, as the average cost of caring for an HIV-positive infant with a life expectancy of age 14 is $500,000. "This bill will not only save lives, it will save the state money," Welch testified before the Senate committee. The state estimates that mandatory HIV testing will cost Medicaid $116,900 a year. While both opt-in and opt-out approaches have been shown to increase the number of pregnant women tested for HIV, a 2002 CDC study comparing the two strategies found little difference in results.
In Illinois, which has an opt-in policy, 72 percent of women had received HIV testing during their most recent pregnancy, while in Arkansas, an opt-out state, 71 percent of pregnant women had been tested. Cox and her colleagues at Riley are eager for HIV testing to become a routine aspect of prenatal care. "When you're sending children home to die, this is a no-brainer," Cox says. "This is a very specific population where we can intervene and prevent disease. Is it the end of the AIDS epidemic in the U.S.? No. Is it the beginning of the end of the pediatric AIDS epidemic? Yes."