What I Took Away from the CMV Public Health & Policy Conference
Wow. I always leave these meetings exhausted and yet completely rejuvenated. Our community of parents, advocates, early interventionists, state health employees, clinicians, researchers, scientists, and stakeholders, were well-represented in Burlington last week, and what was extremely encouraging to me, is that both individually and together, we all continue to operate on full cylinders at the very epicenter of what we’re each trying to ultimately do – save babies and prevent birth defects due to congenital CMV.
Our community is a passionate, resourceful and forthcoming bunch. Everyone is working very hard to combat this virus and in all sincerity, I think we have made tremendous progress these last few years. BUT, I am also humbly reminded that there is a very long way to go. Why? Because this virus is complicated and misunderstood, or maybe even underestimated, and it does not receive the attention it so rightly deserves.
From my perspective, this is the state of the state in 2018 –
- There remain numerous challenges associated with counseling, screening, diagnosis, and treatment of women with an active CMV infection during pregnancy, yet:
- Women want to feel empowered to make informed decisions about their baby’s health.
- Women need to counseled at point of care about simple yet effective prevention methods, especially if they have children at home or work closely with children.
- And women most often want this information from their healthcare provider above all other communication or education methods.
- There needs to be greater collaboration amongst clinicians, researchers, midwives, nurses, parents, advocates, public health departments, and early interventionists to promote open communication, knowledge sharing, and best practices.
- Babies must be identified. Universal screening of babies to better diagnose, monitor, treat and track those with congenital CMV and any of its affiliated outcomes, will eventually equate to better routine care, more standardization, and greater cost effectiveness.
- We need large-scale, federal funding to fast-track multi-center treatment studies.
- We need a vaccine.
As an advocacy organization working to educate women of childbearing age, National CMV’s laundry list is long and getting longer. And we’re green, driven, and agile. We are constantly trying new things and evaluating our programs to best prepare for future growth. And as we learn what works and what doesn’t, we will continue to narrow our programs & priorities because if we are going to be at all effective in moving the needle – we have to make extremely SMART choices about our dollars and resources over time.
National CMV remains dutifully committed. And tremendously inspired.
For those who have been doing this a long time, we salute you. For those who are new to the network, we welcome you. Now everybody, take a deep breath, sort through your notes, and find 15 minutes of your time to lend towards the cause per month. A rising tide lifts all boats.
Now let’s get going.
Category: Advocacy, Community