This article is the first in AFC’s Cuts to the Cascade series, which focuses on the people, programs and communities representing columns of the HIV treatment cascade. All of the Cuts to the Cascade subjects are under threat of losing vital state support as a result of Governor Rauner’s proposed cuts to the Illinois budget.
If one pill could help bring an end to the HIV epidemic, affecting thousands of Illinoisans per year, what is a government’s responsibility to ensure its distribution among the most vulnerable populations?
This question was answered — albeit temporarily — in December 2014 when the Illinois Department of Public Health (IDPH) publicly unveiled a program aimed at increasing access to the drug Truvada for pre-exposure prophylaxis (PrEP) to help HIV-negative people remain uninfected. Scientific studies have shown that when Truvada is taken daily by HIV-negative people, the risk of HIV infection is dramatically lowered by well over 90%.
The Illinois PrEP assistance program, PrEP4Illinois, was designed as a pilot project. Funded initially with $1 million set aside in state general revenue funds, PrEP4Illinois would fill in any remaining coverage gaps around the cost of Truvada once an individual’s health insurance and the drug manufacturer’s copay program were tapped.
On Jan. 28, the AIDS Foundation of Chicago (AFC)’s Director of Prevention Advocacy and Gay Men's Health Jim Pickett and others were invited to a pre-launch walk-through of a PrEP4Illinois online portal. Consumers would have been able to visit the site and enter their personal information, and then the back-end database would have billed their insurance for whatever it would cover, added the Gilead copay and sent the remaining bill to IDPH.
“Overall, the site was awesome, and [the IDPH] team was very open to hearing feedback,” said Pickett.
The IDPH team did share that PrEP4Illinois was still in “approval channels” as of the Jan. 28 meeting and was still waiting for an official green light from the director.
But shortly after Governor Bruce Rauner took office, he issued an Executive Order that halted all “nonessential” spending in Illinois, which included PrEP4Illinois. This turned the green light bright red. Rauner’s proposed budget for FY 2016, which was released on Feb. 18, reiterated the cut in funding for PrEP4Illinois.
Many HIV activists, service organization leaders and medical professionals remain disappointed and angry.
“Illinois was set to be the second state in the nation, after Washington, to provide this level of PrEP support,” said Pickett. “We were going to be national leaders, and we were going to keep people healthy and save money doing so, but that vision was tossed in the garbage. “
Dr. John Schneider is another outspoken critic of the governor’s decision to pull the plug on PrEP4Illinois. He’s an associate professor in the departments of Medicine & Public Health Sciences at the University of Chicago. Schneider is involved in citywide PrEP studies and clinics, and sees growing trends in new cases of HIV in Chicago.
“Even with Medicaid expansion and the Affordable Care Act, there are groups of people who … don’t have the right coverage to cover for PrEP,” said Schneider. He believes that people who are earning too much money to qualify for Medicaid programs but don’t have adequate insurance or financial resources to cover the cost of Truvada will miss out on this vital prevention tool. “South Shore, middle-class Black neighborhoods and Black men who have sex with men — this is going to impact their ability to stay HIV-negative.”
Others have lamented the loss of PrEP4Illinois’ planned streamlining of a complicated payment process for an expensive drug (currently, the average wholesale price of Truvada is $1,539.90 per month, according to the 2015 Positively Aware HIV Drug Guide).
“I have been shocked by the number of times people have contacted me to inform that their insurance was causing so much grief, said Bryan Bautista-Gutierrez, PrEP Coordinator for Howard Brown Health Center, which established a demonstration PrEP clinic in Chicago in 2014 and prescribed PrEP to many patients before that. “This program would've taken care of that right away.”
“The major benefit was it was going to be a state-run program like ADAP that theoretically could have been easier [for consumers],” said Dr. Dave Barker, medical director at the Ruth M. Rothstein CORE Center. The CORE Center focuses on treating patients living with or vulnerable to HIV and launched its own PrEP clinic this past Friday. “It would have been a streamlined, single source of PrEP medication for patients.”
Separate from the state’s proposed program, several strategies have emerged from the HIV community to improve PrEP access in Illinois. PrEP clinics, including clinics at Howard Brown Health Center, the CORE Center, the University of Chicago and ACCESS Grand Boulevard Family Health Center offer assistance in navigating the complicated dance between PrEP, insurance plans and Gilead’s assistance program.
The CORE Center’s new PrEP clinic aims to get more vulnerable Chicagoans access to PrEP, especially young gay men of color and transgender women. “[We provide] access to young gay men of color who may have other health problems and need a primary care physician,” said Dr. Margo Bell, Director of Inpatient Pediatrics for the Cook County Health and Hospitals System, which oversees the CORE Center. As part of the Cook County Health & Hospitals System, the CORE Center accepts all residents of Cook County regardless of their ability to pay.
Additionally, the Chicago PrEP Working Group, led by AFC and the Chicago Department of Public Health, fosters collaboration and coordination between local PrEP researchers, prescribers, programmers, educators, trainers and advocates in support of improving PrEP access to all who would benefit from this important intervention. The group is working to add PrEP clinical capacity throughout Chicago and will be launching a citywide social marketing campaign later in the year.
IDPH continues to champion PrEP as a needed resource in ending the HIV epidemic in Chicago, which affects 43,500 people across the state. In a statement released on March 26, IDPH Medical Director of the Division of Infectious Diseases Dr. Craig Conover writes, “The Illinois Department of Public Health supports the provision of PrEP as an evidence-based biomedical intervention to prevent HIV infections.”
The open letter cites an estimate from the Centers for Disease Control and Prevention that as many as 275,000 HIV-uninfected gay men and 140,000 HIV serodiscordant heterosexual couples in the U.S. could benefit from this intervention — many of whom likely live in Illinois. But without PrEP4Illinois, that support is compromised.
“I hope that Governor Rauner's administration thinks about [HIV-vulnerable people] and mentions them when they talk about these budget cut proposals, said Bautista-Gutierrez. “I hope they tell voters and residents that their legacy will be that they are singlehandedly creating a public health disaster in the state of Illinois, and that they directly contributed to the rise of new HIV infections in some of most underserved communities in state.”