Top 5 Takeaways from CMV 2019
We’ve been to two previous International CMV Conferences, 2015 in Australia and 2017 in the Netherlands, but this was National CMV’s first time participating as a gold sponsor, keynote speaker, and podium presenter, with several parents sharing posters and commenting on panel discussions.
And while our wheels are turning about all of the immediate action items stemming from so many meaningful interactions, we’d be remiss to not reflect on how far we’ve come since incorporating in July 2014. We’re now advising, consulting, sharing. We’re in the room where it happens.
Before we dive into the key discussion points – one underlying theme was ever-present from our perspective – it was and continues to be deeply moving to see how many global professionals are devoting their lives to advancing congenital CMV research. Please know that we see you. And we appreciate you.
Here are our top 5 takeaways –
- CMV continues to be a serious public health issue. Education is critical, protocols are required. The national awareness rate is alarmingly low. At large, healthcare providers are not well-educated about how to counsel, diagnose or treat congenital CMV. It’s considered rare; unlucky. We must approach OB/GYNs, MFM specialists, nurses, midwives, doulas, daycares, and childcare providers about the benefits of protective measures and proactive counseling.
- Universal screening is broadly supported. Experts agree that we’re no longer talking about IF but WHEN this rolls out in the United States (see RUSP nomination). With screening, families can avoid the ‘diagnostic odyssey’ (Gantt). Vestibular dysfunction, hearing loss and other issues (e.g. autism, epilepsy) often present past the age of congenital diagnosis. It’s critically important to identify every child so he/she may refer for monitoring, services, and clinical follow-up as necessary.
- We need to redefine ‘treatment’. The term treatment is not always equivalent to anti-viral therapy or medical mediation. Early intervention (EI) is an available, successful treatment option! The law mandates that every state have an EI program and comprehensive child find system to identify infants and toddlers with disabilities or a high likelihood of developmental delay. Congenital CMV is an automatic qualifier in 34 states. Hospitals, birthing centers, and physicians must identify and refer!
- The ‘actual’ burden of CMV is extremely hard to quantify and not yet fully accounted for. At present, Grosse et al shares that the median cumulative per child cost for first 4 years of life in children with symptomatic CMV is $610k, and the average 4-year cost of healthcare for child born with symptomatic CMV and CNS involvement is $1.6M. While this data is inclusive of many larger considerations, we still don’t understand other “soft costs” such as necessary at-home and mobility equipment, out-of-pocket expenses, counseling for child or family members, other behavioral considerations or therapies, full-time dependent care, or loss of wages for caregivers.
- Seemingly safe and effective vaccines are emerging! Several biopharmaceutical companies are developing immuno-therapeutics, messenger RNA (mRNA) medicines, live virus vaccines, and prophylactic therapies. Phase I and II clinical trials are underway, “powered to demonstrate protection against congenital CMV transmission as the key prelicensure endpoint” (Schleiss, 2017). Advocacy groups can help promote vaccine confidence and education to drive enrollment in these trials.
While it’s clear that organizations like ours will have to continue to push for progress in these areas, we feel confident that we’re prioritizing the right programs and services at this time.
There’s much more work to be done. We’re encouraged and inspired.
Category: Advocacy, Clinical, Community