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Episode #16 – Fresh stART: Baby Steps

16 Cover Art OPT

Summary

Dr. Leslie Enane walks us through her steps to caring for an infant born to a mother with HIV and approaching an adolescent living with HIV.

Credits

Host: Sara Dong

Guest: Leslie Enane

Writing/Producing/Editing/Cover Art/Infographics: Sara Dong

Our Guest

Leslie Enane, MD, MSc

Dr. Enane is an Assistant Professor of Pediatrics at Indiana School of Medicine, in the Ryan White Center for Pediatric Infectious Disease and Global Health. She also serves as the Medical Director of the Pediatric HIV Clinic at Riley Hospital for Children. She conducts international research on HIV and TB care for children and adolescents in partnership with the AMPATH Program in western Kenya, and the multiregional IeDEA Consortium. Her NIH-funded research investigates adolescent disengagement from HIV care in western Kenya, as well as clinical tools and interventions to promote adolescent retention in HIV services.

Twitter

Culture

Leslie gets a lot of joy from podcasts and uses them as a window to hear about different experiences around the globe!

Consult Notes

Consult Q

Assistance with an infant born to a mother with HIV

One-liner

A term infant born to an adolescent mother with HIV

Key Points

Jump to:

Resources
Terminology
Questions for a new perinatal exposure
Low vs High risk
Neonatal ART recs
Neonatal HIV testing
Infant feeding & HIV
Notes from adolescent discussion
Ryan White

A few resources to start:

You are the pediatric ID fellow on call and get a page about an infant born to a mother with HIV.  What are the initial questions we should be asking?  What additional information do you need for risk assessment and determining recommendations for this infant?

You want to understand the maternal HIV diagnosis and management history!

  • History and timing of maternal HIV diagnosis and other pertinent medical history
      • Was diagnosis known prior to pregnancy?  
      • Or identified during pregnancy?  If so, which trimester? Is there any concern for acute HIV infection?
      • Other STIs that may impact pregnancy?
  • Maternal HIV treatment and virologic response
      • Was ART started prior to or during pregnancy?  Which medication regimen?
      • What is mom’s most recent viral load?  What has been the recent trend in VL during pregnancy?  
      • Any issues with adherence?
  • Intrapartum details
      • Mom’s VL near time of delivery?
      • Mode of delivery?
      • Any issues or complications during labor and delivery?

How to assess risk for perinatal HIV transmission?  In general, a low risk scenario is a mother who has known HIV, is adherent with ART, and remains virally suppressed.  There is a spectrum of what would be considered higher risk, and that risk is largely driven by the maternal viral load.

Low risk features include:

  • Maternal viral suppression (HIV RNA<50) near delivery
  • Mother on ART in pregnancy
  • No adherence concerns

Risk of perinatal transmission less than 1%

High risk features include:

  • Maternal ART concerns 
      • Did not receive antepartum or intrapartum ART
      • Received only intrapartum ARV drugs
      • Received antepartum and intrapartum ARV drugs but did not have viral suppression near delivery (defined as confirmed HIV RNA level <50 copies/mL) near delivery
  • Acute or primary infection during pregnancy  (**highest risk scenario**) or breastfeeding

Risk of perinatal transmission is upwards of 25-40% in the highest risk scenarios (including whole period of time with pregnancy through breastfeeding).  This is a spectrum though that is driven by maternal VL, and a mother with a VL of 50-200 copies is different than a mother with a highly elevated VL or acute HIV.

The example case in the podcast episode is an example of a missed opportunity as several weeks elapsed from her HIV diagnosis and initiation of ART.  

  • All pregnant women with HIV should receive ART right away to help drive down the HIV VL and prevent perinatal HIV transmission and secondary sexual transmission.
  • If there are concerns or difficulty with initiation of therapy, can call the local pediatric ID specialist or consider the National Clinic Consultation Hotline for help with perinatal cases.
    • National Perinatal HIV Hotline 1-888-448-8765

Defining a few terms that can be confusing.  Remember that when we use these terms, sometimes we are talking about the same medications.  It is really based on the purpose or rationale for treatment, and this can shift within the same clinical management scenario.

  • Antiretroviral prophylaxis
      • Use of 1 or more drugs for newborn without documented HIV infection to reduce risk and prevent perinatal acquisition
  • Presumptive HIV therapy
      • 3-drug ARV regimen to newborns at the highest risk of perinatal acquisition of HIV
      • Intended as preliminary treatment for newborn who is later documented to have HIV, but also serves as prophylaxis against HIV acquisition to those exposed in utero, during birthing process, or during breastfeeding and don’t acquire HIV
  • HIV therapy
      • 3-drug ARV regimen in patient with documented HIV infection

For more info on intrapartum management, check out the DHHS guidelines and episode infographics.

 

***The PACTG 076 (Pediatric AIDS Clinical Trials Group) paper is the landmark efficacy trial that established the use of ARV prophylaxis with a ZDV regimen (mothers given ZDV alone during pregnancy, intrapartum period, and to their infants).  It demonstrated reduction in perinatal transmission by 67.5% when compared to placebo.

 

Neonatal ART regimens

  • All newborns exposed perinatally to HIV should receive postpartum ARV drugs to reduce risk of perinatal transmission
  • In our podcast scenario, presumptive HIV therapy with 3-drugs was recommended for this baby because they were high risk features)
  • Presumptive HIV therapy for an infant at high risk of perinatal HIV transmission includes:
      • Zidovudine (ZDV)
      • Lamivudine (3TC)
      • Nevirapine (NVP) OR Raltegravir (RAL)
    • How do you decide between RAL and NVP?  
      • Both are recommended by guidelines and have a low barrier to resistance
      • Your local availability may impact the selection of this third agent
      • Raltegravir (RAL) pearls
          • RAL granules are tricky to give: come in packets, parents have to create the suspension, and then throw away the remainder of the packet.  Needs good teaching on administration for parents
          • No dosing recommendations for preterm infants <37wks
          • Need weight over 2 kg
          • More potent.  If really worried about in utero transmission, Leslie probably would prefer to use RAL
          • Of note, if you get resistance with RAL, might lose DTG in the future as an option
      • Nevirapine (NVP) pearls
          • Liquid formulation, well tolerated
          • Dosing can be tricky (traditional recommendations had a slightly unusual schedule)
          • Preferred for infants <37wks because lack of dosing and safety data with RAL

Neonatal HIV testing

  • Virologic assays (HIV RNA or HIV DNA nucleic acid tests) that directly detect HIV must be used for diagnosis in infants and children <18months 
      • Antigen/antibody immunoassays for HIV-½ and HIV-1 p24 Ag should not be used in infants!! The median age of seroreversion is 13.9 month, but 14% of infants remain seropositive after 18 months, 4.3% after 21 months, and 1.2% after 24 months (Red Book HIV Diagnostic Tests Section)
      • RNA or DNA are equally recommended.  DNA PCR detects proviral DNA while HIV tests measure viral RNA in plasma, so there is potential for DNA testing to be more sensitive in infants with very low viral loads — but studies have shown RNA and DNA NATs to produce comparable results
  • Children should have a CBC/diff with baseline evaluation
  • Testing recommendations vary based on whether the infant is low risk or high risk and include HIV NAT at following times:
      • Low risk: 2-3 wks, 4-8 wks, 4-6 mo
      • High risk: at birth (within 48 hrs), 2-3 wks, 4-8 wks, 2-6 wks after ARV drugs are stopped, 4-6 mo
          • So high risk infants receive two additional tests: HIV NAT at birth to assess for infection in utero and a test a few weeks after stopping therapy
          • The birth test has the advantage of early detection (which helps reduce loss to follow-up), but it’s disadvantages are that it can be relatively insensitive (38-57% in first 2-3 days) and a negative result is falsely reassuring.
  • Definitive exclusion of HIV infection in a non-breastfed infant:
      • 2 or more negative virologic tests, with one obtained at age >=1 month and one at age >=4 months
      • 2 negative HIV Ab tests from separate specimens that were obtained at age >=6 months
      • Some experts confirm absence of HIV at 12-18 months with a test to document loss of maternal HIV Abs — but since children 18-24 mo with perinatal HIV exposure occasionally still have residual maternal HIV Ab, definitive exclusion or confirmation is based on HIV NAT (children 18-24mo may still have residual maternal HIV Ab, see rates in first section of bullets above)



We briefly discussed breastfeeding in episode 15, but we spent some additional time talking about infant feeding with Leslie as well.

You can find some notes from the discussion with Rebecca in episode 15 here.  There are several papers that summarize the topics and speak to the ethics/conversations around the topic of breastfeeding and HIV

Other tips: Leslie spoke about the importance of supporting these mothers through what may be a difficult time.  There is widespread impact of stigma, trauma, and vulnerability in these women, particularly with pregnancy and delivery.  They may even experience some trauma just with engagement in health care.  We must be recognize this and work to provide trauma-informed care to our patients.

We know that adolescents and young adults struggle more with adherence than their adult counterparts and leads to lower rates of viral suppression. Leslie spoke a little bit about barriers that adolescent patients with HIV face and strategies to guide conversations with adolescent patients that may be struggling.  This is a huge and complex topic, but just a few notes from the discussion

  • Remember that barriers to adherence in these patients are often part of normal adolescent development
      • At this stage, adolescents are developing identities and learning who they are as a person.  It is normal to develop separation and independence from their families — and to prioritize peer relationships. 
      • It is normal that they may engage in more risk taking and experimentation
      • Stigma has a huge influence for anyone with HIV, but this can be particularly impactful in adolescents who are already at risk for mental health challenges and really focus on peer relationships
      • Cognitively they are moving from concrete thinking → more complex.  They may have more limited ability to understand consequences or long term health considerations
      • Our focus is to try to support them through this time period of normal development until it is a bit easier for them
  • Some barriers to ARV adherence to consider:
      • Depression or comorbid mental health diagnoses
      • Disruption of daily routine
      • Denial, fear, forgetfulness
      • Substance use
      • Lack of family or social support
      • Structural barriers like homelessness
      • Limited health literacy; Poor understanding of adherence and its importance
  • Ask open-ended questions about HIV, viral suppression, health
  • Then try to get to the basics of medication taking
      • How are you taking the medication?  What time?  How many pills?  Is it the same time every day or is there variability?
      • Is this a part of a routine or are there changes in the routine (work/school/life)?
      • Do you use a reminder system?  Does a person help remind you?
      • What happens when you forget?  Is it a change in routine or something else?
      • Has support in their home changed?  Was there a change in where they are staying, who they are living with, change in romantic partner?
      • Does simply looking or taking the pills cause them to feel depressed? Or remind them of an initial trauma?  

 

Leslie mentioned the possibility of long acting injectable cabotegravir as a possible option for a patient who might be experiencing pill fatigue, like Darcy talked about in episode 13.  There is limited experience with this in adolescent, but might be a consideration if they are virally suppressed.

 

Another thing to consider for the management of adolescents that is part of routine care is thinking about assessing readiness for and preparing for eventual transition to adult HIV care services.  Perhaps we can have a future episode just speaking to helping pediatric patients navigate the jump to adult care!  

We wrapped up the episode and series with a quick note about legacy of Ryan White.  Here is the brief bio and some links to learn more

Ryan White was a young man diagnosed with HIV/AIDS following a blood product transfusion for his hemophilia in December 1984.  He was 13 yo at the time and living in Kokomo, Indiana.  He was one of only a few children known to have the disease in the US at the time and was unfortunately only give a few (up to 6) months to live.  When he regained some of his health and tried to return to school though, he encountered AIDS-related discrimination.  Despite doctors advising that he posed no risk to other students, AIDS was very poorly understood — and many parents and teachers argued against his attendance.  Along with his mother, he rallied for his right to attend school and gained national attention — and so became the face of public education about HIV.  He lived 5 years longer than predicted, but died in April 1990: one month before his high school graduation and a few months before Congress passed the legislation bearing his name in August 1990 – The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.  The Ryan White program provides a comprehensive system of HIV primary medical care, essential support services, and medications to people with HIV. Riley Hospital and Indiana play a large role in his story as this is where he was given his diagnosis, treated, and ultimately died.  His mother continues to be an advocate for PLWH.

  • More about the Ryan White HIV/AIDS Program here 
  • You can find the book he authored here:  “Ryan White: My Own Story”

Leslie explained how his story shows the power of young people leading the way, speaking to their own needs, and advocating for increased access to medical care, science, and research.  His legacy reinforces that some of the highest impact activities for young people with HIV is to have access to peer support groups.  

 

Other miscellaneous mentions and notes:

Episode Art & Infographics

Goal

Listeners will be able to apply guideline and evidence-based recommendations to provide care to an infant born to a mother with HIV

Learning Objectives

After listening to this episode, listeners will be able to:

  • Compare and contrast high and low risk features for perinatal HIV transmission in pregnancy 
  • Construct a guidelines-based antiretroviral regimen for an infant with high risk for perinatal HIV transmission
  • Recommend appropriate HIV testing for infants born to a mother with HIV
  • Discuss infant feeding in the setting of an infant with perinatal HIV exposure

Disclosures

Our guest (Leslie Enane) as well as Febrile podcast and hosts report no relevant financial disclosures

Citation

Enane, L., Dong, S. “#16: Fresh stART: Baby Steps”. Febrile: A Cultured Podcast. https://player.captivate.fm/episode/b4a5124e-78a3-4bac-a322-bd1a6960440c

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