Fetal Infant Mortality Review – HIV

Systemic Case Review Process for HIV and Congenital Syphilis (FIMR-HIV/CS) 

MACA helped develop the 2015 national methodology for ensuring case review of successes and failures in prevention of HIV in babies. This expanded the work we began in 2010 in collaboration with the Illinois Department of Public Health (IDPH) to assess “holes” in our Illinois perinatal HIV prevention safety net that were missing key steps in treatment and prevention. We leveraged an approach based on Fetal Infant Mortality Review (FIMR) to look at morbidity and disease outcomes. 

The bottom line is this: We have methods that can, and should, ensure that no child begins life with HIV infection and put women on track after pregnancy to remain HIV-free long after their children become adults. The FIMR/HIV Prevention Methodology is an effective way for communities to ensure that these methods are used.

Our safety net for prevention of transmission of HIV from mother to child can also be used to prevent Congenital Syphilis. We must look at both successes and failures of prevention to make sure the safety net is effective. By looking at failures or missed opportunities, we can identify where we need to strengthen the net and close the holes. 

The FIMR-HIV/CS brings together key partners in an action-oriented quarterly community process convened by IDPH. Participants include MACA, the Hotline, Illinois Perinatal Network, DCFS, Cook County Department of Public HealthCook County Jail, John Stroger Hospital, Northwestern Memorial, University of Chicago Hospitals, CDPH, moms and dads living with HIV, and various statewide partners.

We review how pregnant women living with HIV or pregnant women diagnosed with syphilis in Illinois were connected to care and treatment for optimal birth and pediatric outcomes. Each session assesses, monitors, and identifies areas of improvement in service systems and community resources for women, newborns, and families.

Lessons Learned From FIMR-HIV

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The closed-door group of experts reviews conducts in-depth case reviews of all potential perinatal HIV or Syphilis exposure or transmission in the state. We identify system strengths, missed opportunities for prevention and, more rarely, failures of interventions to prevent perinatal transmission in Illinois. We can then develop and implement improvements to systems of care. 

MACA’s Role with FIMR-HIV/CS

  • Coordination of list of cases for review across all stakeholders
  • Chart abstraction and write-ups
  • Analysis, preparation and presentation of case summaries
  • Integration of data from our Hotline and Enhanced Case Managers

It Works!

Our reviews have demonstrably helped improve the systems of care in Illinois. Many improvements have been implemented thanks to this system.

Every touchpoint matters. For example, a pharmacist and HIV medications expert from Walgreens, was invited to attend the review of a case where the lack of an onsite outpatient pharmacy complicated treatment and delayed discharge of an infant exposed to HIV. As a result of that review, leadership from Walgreens met with MACA and the Hotline to develop a state-wide protocol for urgent medication process assistance for hospitals. This helps solve challenges filling prescriptions for newborns allowing them to be discharged home with pediatric syrup antiretroviral (ARV) treatment in hand.

For more information on the success of FIMR-HIV/CS, please email us at


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