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HIV positive mothers and babies will be at greater risk if budgets are cut for the Pediatric AIDS of Chicago Prevention Initiative.

Care for HIV positive mothers and their babies at risk

by Jessica Whitfield
May 31, 2012


Jessica Whitfield/MEDILL

Laurie Ayala catches up on office work at the 24/7 Illinois Perinatal HIV Hotline.


Jessica Whitfield/MEDILL

Laurie Ayala and Sarah Carter catch up on office work at the 24/7 Illinois Perinatal HIV Hotline.


Jessica Whitfield/MEDILL

Six medical centers in Chicago (CORE Center, University of Chicago Medical Center, Mount Sinai Hospital, Northwestern Memorial Hospital, University of Illinois Chicago Medical Center and Rush University Medical Center) offer rapid HIV testing in conjunction with the 24/7 Perinatal HIV Hotline.

PACPI Infographic1

Graphic produced by Jessica Whitfield/MEDILL

State budget statistics from the Illinois Department of Public Health. Federal budget information quoted from the Kaiser Family Foundation.

For Jennifer Stone, health insurance has never been a problem, despite being diagnosed with HIV almost four years ago.

Stone says the Pediatric AIDS Chicago Prevention Initiative helped her gain insurance and stability in her life.

“I was diagnosed at 12 p.m. and they were there by 3,” said Stone, 27, who has two children and asked that her name be changed to protect her identity. “I wouldn’t have housing, a great doctor or furniture if it wasn’t for them.”

Yet, if proposed state budget cuts go into effect, advocates say that they could lose $4 million in annual funding that goes toward helping HIV positive mothers like Stone.

Gov. Pat Quinn’s budget proposal for the 2013 fiscal year, calls for “serious spending reductions and efficiencies across state agencies and constitutional offices.” Affected programs could include the Pediatric AIDS Chicago Prevention Initiative and some Medicaid groups and services.

For mothers such as Stone who receive financial and mental support through the initiative, the budget cuts would mean the elimination of services through the prevention initiative.

“When I was first diagnosed, it was devastating, but the counseling has helped,” Stone said. “They helped me with everything.”

The Illinois Department of Public Health HIV/AIDS Surveillance Unit and Reporting System estimates that there have been approximately 16,000 HIV cases in Illinois since 1981 with an additional 8,300 Illinois residents who do not know they are HIV-positive. Women represent almost a quarter of new infections.

In 2009, Illinois had eighth highest cumulative number of AIDS cases, according to the Kaiser Family Foundation, with more than 39,000 reported cases and 20,000 deaths since 1981.

The state legislature passed the Perinatal HIV Prevention Act in 2008 to help provide information and awareness to HIV positive women who were pregnant or hoping to become pregnant.

Some of the mandates include the offer of HIV testing and counseling to all pregnant women, rapid tests during labor and after delivery for women without a documented HIV status, mandatory testing of newborns and a preliminary report from hospitals on HIV positive women and/or infants to the 24/7 Illinois Perinatal HIV Hotline within 24 hours.

Infants of HIV positive women receive immediate treatment that can help prevent the HIV virus.

Rapid HIV testing for pregnant women, which provides preliminary results in 20 minutes as opposed to a week or even more for a standard HIV test, helps in providing immediate treatment to mothers. Without that treatment, mothers have a one in four chance of infecting their children. However, with treatment the transmission rate is less than one percent.

Averting cases of HIV results in hundreds of thousands of dollars in savings in medical care for the state, for mothers and their children, advocates say. And that is in addition to the human victory of potentially saving the lives of mothers and their babies.   

All these services could be at risk, said Laurie Ayala, who serves as statewide co-coordinator for the Illinois Perinatal HIV Hotline. The hotline acts as a resource for perinatal health care providers designed to identify pregnant, infected women and link them to care with organizations like the Initiative.

The hotline is centered in Illinois and works with 120 hospitals statewide to offer care to high-risk women.

“Illinois has been ahead of the curve and way more progressive than other states with rapid testing and treatment for women, there’s no reason this care shouldn’t be provided,” Ayala said.

According to the Illinois Department of Public Health, 563 people are also in danger of losing medical care, food, and mental health treatment, things that all helped Angela Davis when she was diagnosed last December.

“In the beginning it was a shock but [the Pediatric AIDS Chicago Prevention Initiative] has helped with diapers, transportation to and from the hospital for my appointments and a car seat,” said Davis, a Chicago mother who also asked that her name be changed.

Through the Initiative’s support, Davis is able to maintain a routine life caring for her five-month-old son, whose tests have come back negative for the HIV infection.

“I just take my meds and I’ve been good so far. Everything happens for a reason and my case manager has been like a mom to me. They do whatever they can and it does help a lot,” said Davis.

With such a high HIV/AIDS population, Pediatric AIDS of Chicago Prevention Initiative case manager Lucy Rios said that while her own job may be at risk, cuts to Medicare and the AIDS Drug Assistance Program will have an even bigger impact on her clients.

“Our case managers will probably be cut in half to around two to three people and most clients may have to go to clinics where they’ll be working with a different case manager each time. It’s tough because in that situation it’s hard to build trust,” Rios said.

Rios also stated that her position and relationship with her clients goes beyond just education.

“I usually to talk to them first, educating them on HIV and also drive them and go with them to that first [doctor’s appointment] because I know it can be nerve wracking. Whatever they need, I link them to it,” said Rios.

The AIDS Foundation of Chicago recently started a ‘Take Action’ campaign that urges Illinois residents to call their legislators and speak out against Quinn’s proposed budget cuts.

Quinn is scheduled to sign the finalized budged later today.