By Ruojing Liu
“They saved my life.”
When LeSherri James was pregnant with her first baby in 2003, the homeless 21-year-old HIV positive mother-to-be was not left to face the pregnancy on her own. Anne Statton and the Pediatric AIDS Chicago Prevention Initiative (PACPI) she led was there to help.
The organization helped James through every step of her pregnancy: they made sure she get to doctor’s appointments, filled her prescriptions, set up a perinatal training course to teach her how to take care of her child, helped her secure a health care plan, signed her up for the federal Special Supplemental Nutrition Program for Women, Infants, and Children, and got her an apartment.
This hand-holding model in Illinois has been recognized as a successful model of prevention for mother-to-child HIV transmission by the Centers for Disease Control and Prevention. The daughter James had that year was healthy and HIV negative.
“I wouldn’t be the mother I am today without them, I probably wouldn’t even be here,” James said. “I can’t even imagine not having them in my life.”
However, starting from as early as June this year, pregnant women with HIV in Illinois might not be as lucky as James.
The state’s fiscal year 2016 budget might as well be a miscarriage, as perinatal HIV prevention organizations like PACPI face closure.
Usually, organizations should be well capitalized in order to be eligible for state funding, because they have to pay the money upfront, then wait to be reimbursed. Such reimbursement could take as long as nine months. However, an organization cannot run forever without funding.
Right now, the state of Illinois has been running without a state budget for more than 8 months, and as the new 2017 fiscal year starts on July 1, there is still no sign of an agreement of the 2016 budget between Governor Bruce Rauner and the General Assembly, and strong opposition is also growing against the Governor’s proposed fiscal year 2017 budget.
About 90 percent of PACPI’s funding comes from the state. Statton said so far only about $91,900 federal funds have been passed along from the state; and the state, on its own part, still owes the organization more than $500,000. The whole fiscal year’s funding would add up to $845,000.
The question lying before Statton and her organization is, even if a 2017 budget is reached on time, they’ll also need to pay that cycle of services upfront; but if they’re not reimbursed by the 2016 budget, they won’t have enough money on hand for another nine months, while waiting to be reimbursed by the 2017 budget.
Death of perinatal HIV support is looming
PACPI serves about 120 HIV positive women each year. They either are pregnant or have recently had a baby.
“The women that we focus on, for the most part, are the ones who are most likely to transmit the virus to their babies,” Statton said. “These are the women who are suffering from
community and domestic violence, or suffering from addiction and dependency issues … these are women who are suffering from poverty, stigma and racism.”
Of the approximately 120 women PACPI served in 2015, no HIV positive baby has yet been found. It takes four months until a baby can be identified as HIV negative, leaving only babies born after November to be confirmed as free of the virus.
The estimated life-time cost of treatment for an HIV positive baby is $1 million. The national average of women who will transmit the virus in the absence of treatment is about one in four cases. By that rate, within the 120 women PACPI helps each year, 30 of them could deliver an HIV positive baby, the potential money PACPI saved is $30 million.
The transmission rate can be cut to less than 1 percent only if the mothers receive proper care. However, even with four pregnancies, James still thinks she could not navigate through another pregnancy by herself.
PACPI, under contract with the state, runs the state perinatal HIV hotline as legally mandated by the state’s HIV Perinatal Prevention Act. The hotline is for individuals and health organizations to report HIV pregnancy cases as required by the state. For the hotline itself, PACPI hasn’t received any reimbursement of the annual $191,000 total from the state since last July.
Statton said PACPI has been holding back on anything that is non-essential. But as the organization resides at the AIDS Foundation of Chicago’s place for free, they have very little administrative spending to begin with.
“The challenge is: with pregnant women, if she delivers today, she needs a car seat to take the baby home from the hospital. We cannot hold that expense,” Statton said. “Prevention of perinatal transmission is right now.”
Statton said if no 2016 budget is reached before the end of June, they’ll have to make the difficult decision to gradually close up and transfer the current 70 HIV positive women to regular care, leaving them navigating the complicated health system by themselves.
If no 2016 budget is ever approved, with the contracts they hold, PACPI could also take the state to court and demand reimbursement for the services they have provided. However, those legal negotiations are not going to yield the money anytime soon.
Statton said they have already informed the HIV/AIDS section of the Illinois Department of Public Health about their difficult situation. Although the state’s health department expressed its intention to help, the Department’s hands are tied without a budget to appropriate the needed money.
A very likely scenario is that when a 2017 budget is reached, there will not be an organization to receive the money and provide the services to support HIV positive mothers. As a consequence, more HIV positive babies could be born in the state of Illinois.
“They could save money by not paying us in the short term only,” Statton said. “If we go away, the system of care here in the state of Illinois is not prepared to work with our clients.”