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UTAH STATE UNIVERSITY – CASEY JUDD

EHDI 2019 – PRECON – PARIS – ACTION PLANNING: INCREASE EDUCATION
MARCH 3, 2018
1:30 P.M. ET

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>> SPEAKER:  Hi, everybody.  Thanks so much for joining us early on Sunday.  My name is Kristen Spytek, I'm the President of National CMV Foundation, and I'm joined here today by Erica Steadman, who is the parent sponsor of the Illinois ‑‑ off mic ‑‑ we'll introduce ourselves a little bit more, but just really quickly to start things off, how many people in the room know about the CMV virus and its effects?  Awesome.  Fantastic.  So, um, we have a pretty robust agenda for you guys today, but we realize it's a long session and we're just getting started, so we will take a break in the middle, and then there will be a lot more interaction, um, in the second part of the session.  So, um, we want to make this as engaging as possible.  Please ask questions, please, you know, raise your hand, and let's have an engaging discussion.  If anything comes up or jogs something that you want to talk about, um, and we'll work together on it.  So, without further ado, we'll kick it off.  
So, a little bit about me.  I am currently living in Tampa, Florida.  My, I have three beautiful kids.  My daughter, Evelyn, unfortunately, is no longer here.  She was my baby with congenital CMV born March of 2013.  My pregnancy was fairly normal.  During the later part of the pregnancy, some abnormal scans were showing up with echogenic vowel, but I did not receive any prevention or education counseling during pregnancy about CMV, and it was not until my daughter was born, um, and the neonatologist said I think this is a case of CMV was the very first time I had learned that word, that term, and what it meant, and my daughter was born very profoundly impacted.  Um, microcephaly, hearing loss, cortical vision impairment, epilepsy, cerebral palsy, and other disability due to all of that, CNS involvement.  She otherwise was a total light.  We, you know, had the most amazing time with her.  She was our first child, and we, um, spent every waking moment, you know, between travel and laughing with her and playing in therapy and treatments and doctor's appointments.  That was our life for 21 months, and she passed rather unexpectedly, but due to outcomes from the virus.  So, um, so we miss her terribly.  
My son, Jack, was born three weeks after she passed, so it was a very impossible time.  I was working full‑time, my background is marketing, um, and, so, um, somewhere in the middle of all that, I started the National CMV Foundation and connected with other parents who were doing some regional efforts within their states.  There were three other organizations at the time that were doing advocacy work, and in January of 2016, we decided to join forces, and now, we have, we are the only organization doing awareness, education, and advocacy for CMV in the United States, and we have a tremendous network of parents working with us to achieve a lot of these accomplishments we've set out.  So, um, we have a long way to go, but I'm very, very proud of sort of where we started and where we're headed, and as of last year, National CMV Foundation finally hired some staff members, and I am the official President of the organization, and I quit my day job, and this is sort of where I'm at now.  So, this is not only a passion project for me, it's incredibly personal, but it's also, um, something that I'm really delighted to do, if it means helping future babies.  So, um, I now have a third child named Tom, and he's 2 years old, and, um, the boys keep me busy, and they're a blast, and, um, they will certainly learn all about their sister and why my husband and I do the work that we do.
>> SPEAKER:  Hi.  I'm Erica Steadman, and I am a resident of Illinois.  So, as Kristen mentioned before, I was the parent sponsor of the CMV legislation that we have here today.  I have three children as well.  My oldest is Justine, she's 6 years old, um, my second child, Evelyn, I didn't steal your name, we have two Evelyns, she's 5, she was born with congenital CMV, and then I have a very busy 2‑year‑old, Lily, um, and I've been married to my husband for nine years, and, um, similar to Kristen's story, I had a pretty routine pregnancy with Evelyn, I didn't have any sort of scares or, um, monitoring that was happening, it all just kind of unfolded naturally when I was, um, went into early labor with her at 34 weeks, and, um, everything sort of cascaded down from that moment.  We were in the hospital, she was born via emergency c‑section, I was overwhelmed, but excited that we had our little premie and she was going to come home with us in a couple days, and the neonatologist on staff at the hospital, um, was very nervous and started talking about complications and problems, and that's where our CMV journey started.  So, she got transferred the next day, um, day two of life, to Culmer Children's Hospital at the University of Chicago, and we stayed there for about a month.  We were told everything, um, about CMV.  I met with countless amount of specialists, all in one week.  
Um, it was a very, um, jarring time in my life, for me and my husband, and we also had a 16‑month‑old daughter that we were trying to take care of, but, um, you know, we were told Evelyn was, um, one of the worst cases of CMV that they had seen, which is just every parents' nightmare to hear in the hospital, to prepare for her not coming home with us, and, um, you know, or get used to a lifetime of extreme challenges.  So, out of those, um, challenges, I think we've risen to meet them with a smile on our face and all the love in our hearts.  Evelyn has cerebral palsy, she's deaf, due to the virus, so she wears cochlear implants.  She has cortical visual impairments, epilepsy, microcephaly, global developmental delays, um, and, yeah, and is wonderful in every way.  So, that's a little bit about myself.
>> SPEAKER:  So, today, um, we're going to walk you through a little bit about CMV, just simply what it is and the transmission of the virus and, you know, some of that counseling in terms of what we're talking about at the foundation and else where about prevention.  We'll talk a little bit about sort of the incidence rates and, um, versus awareness, which is what we're really interested in, and then a little bit about the foundation in terms of how we're sort of mobilizing for public health policy and passion.  We'll talk about CMV as a public health issue and what else, you know, has been done from a public health campaign and the importance of that and what we're trying to do moving forward, and then just simple strategic advocacy, what can the folks in this room do, what can you bring back to your states and your departments of health and how can we kind of mobilize within the states to sort of ground‑swell this effort, because, um, the top‑down approach with, um, you know, AAP, ACOG, peds, for example, is slow, and, so, I think the bottom‑up will be a lot more effective, and we just are always looking for folks to join the movement and help get the word out and educate and counsel and monitor, um, these kiddos.  So, that is what we're talking about today, and then just simply the learning objectives that we mentioned in the abstract, um, identifying key stakeholders, so want to have a lively discussion around that in terms of who in your state can you tap to help you with some of these efforts, um, and when we talk about efforts, we talk about education, screening largely, um, developing appropriate educational messages, so we'll have a little bit of a brainstorm to talk about messaging, and then learning about the existing resources available to help pass legislation, if that's a route that makes sense for your state.  Otherwise, there are some other options that we can certainly explore and talk about as well, but before we sort of jump into the text, we wanted to share this video.  This is, um, one of our CMV kiddos, her name is Caitlin Hill, she resides in North Carolina.  This is a few years old, she's actually a little bit older than this now, but she was born with congenital CMV, and we'll let her parents kind of tell her story here.
>> SPEAKER:  Tell me about you.
>> SPEAKER:  I'm Caitlin Hill, and I love to play.
>> SPEAKER:  Caitlin is my second child, and my first pregnancy was so easy.
>> SPEAKER:  A couple of ultrasounds before Caitlin was born, um, there were things happening medically, you know, with the ultrasounds that made us nervous.
>> SPEAKER:  And I just assumed when they said, well, we've got this problem, but this one cleared up, that it really wasn't that big of a deal.
>> SPEAKER:  I always felt a little bit let down in that way, that we didn't have a whole lot of information, nobody said, hey, this is actually a big deal, your baby could be in danger.  They, I think, I don't know if they wanted to protect our feelings or what, but it seems like it was underplayed a little bit.
>> SPEAKER:  She was quiet when she was first born.  They did a c‑section, and they had her, and we kept waiting for that cry, and we did hear it, but it was little.
>> SPEAKER:  She was 4 pounds, 10‑ounces, so she was very small.  She had all these health issues.
>> SPEAKER:  It's really common, it's the most common congenital virus.
>> SPEAKER:  When I know somebody's pregnant, I always say, hey, do you know about CMV?  And they almost always say no.
>> SPEAKER:  I would like it to be just another thing that women know about, something that women know to avoid.  So, I'm educated, I know about CMV, and I still got told it was never going to happen again, it's so rare, your case was kind of isolated, and it's not rare, it's pretty common, and they're just not getting the education that they deserve.  I didn't think that, you know, seven years down the road, we would still be in speech therapy and going to doctor's appointments and dealing with effects of this one virus that caused so much damage.
>> SPEAKER:  So, whenever I was at least 4, I got my hearing aid.
>> SPEAKER:  So now, she is 7, and she is completely deaf in her right ear, and she's got a moderate loss in her left ear, and so she uses a cochlear implant on the right side and a hearing aid on the left side.
>> SPEAKER:  I'm pretty happy that Jesus made me with my mom, because I don't get in trouble a lot.
>> SPEAKER:  She doesn't see those kind of dividing lines that we see.  Everybody's her friend, it doesn't matter who they are, how they look, how old they are, they're all her friend, and she's so open, and she's so happy, she'll give anybody a hug, and when she grows up, she wants to bake cookies and give them to people, and that's just Caitlin, she's just, she just is loving.
>> SPEAKER:  You know, nobody knew what it was, but I wish we'd been given a little bit more information.
>> SPEAKER:  It's not hard.  It does take a little bit of a shift and some intentional behavior, but you do that all the time when you're pregnant anyway.  You're accustomed to that, you understand the importance, and I think that moms are willing to do anything to protect their kids, as long as they know about it.
>> SPEAKER:  I love how I am.  I am a perfect girl.  I have a perfect home, perfect mom and dad, and most of all, perfect sisters and brothers.  I'm the perfect girl in my family.  I'm a little too perfect from the others, because they are not deaf, so too bad for them. 
>> SPEAKER:  So, we love that story.  We think it really resonates with this conference in particular.  Caitlin's doing very well.  Unfortunately, she has had, um, a little bit more loss in her left ear in terms of hearing, so they are continuing to monitor that, but she is doing very, very well from an outcome perspective in school.  So, really, really exciting, again, topic for us, because I think that CMV is finally making some traction, and this audience in particular is doing a lot of work around it, so we're really inspired by what you guys are doing and, you know, we really look forward to working together today and beyond.  So, just a little bit about CMV, for those who are not as knowledgeable.  Um, it is the most viral infection and the leading non‑genetic cause of hearing loss that infants are born with in the U.S.  So, every pregnant woman, whether you're positive or not, is at risk of acquiring CMV or having re‑infection.  Um, 91 percent of women do not know about it, and that is according to some awareness surveys that we have conducted through the years.  So, our messaging is that CMV is common, it's serious, and it's preventable.  CMV is a public health issue, and that is what we're largely talking about today, but, um, since this is sort of your area of expertise as well, we'd love to sort of brainstorm together on how we can make end roads in terms of infectious disease and just simple health policy around this issue. 
>> SPEAKER:  Sure.  Um, so, one out of three pregnant women who become infected with CMV will pass the virus to their unborn child.  One child is permanently disabled by congenital CMV every hour, and one in 200 children are born with congenital CMV every year.  So, just by looking at that, the statistics, I think, showcase how prominent a public health issue this really is.  And just kind of going into more of the medical scientific background of CMV, um, one thing that we'll, I'm just going to kind of go to the third point here, which is it's the most common cause of, um, congenital infection in the developed world, more common than down syndrome, fetal alcohol syndrome, pediatric HIV/AIDS, spina bifida, and Zika, and the primary infection usually happens within early childhood, adolescence, child‑bearing years, um, and then serial prevalence increases with age, varies with socioeconomic status.  One of that is 50 percent of middle and 80 percent of lower, um, socioeconomic status adults are serial positive.  Transmission, so, um, it's transmitted through bodily fluid.  These are just some of the examples of how it can be passed, but women who work with young children or have young children of their own are at a greater risk for contracting CMV during pregnancy, and one of the studies showed that in childcare settings, that 75 percent of toddler age children have CMV in their saliva, so they are definitely active spreaders of this virus and pose a great risk to women who are pregnant and working amongst this population.
>> SPEAKER:  Another thing I wanted to add here is that, um, you know, it is largely transmitted through these bodily fluids, and CMV virus can certainly last on hands and/or crackers or pacifiers for up to 15 minutes, so, um, the hygiene, um, in terms of being a mom or someone who works with these children just has to be overly conscious.  You know, you don't have to necessarily change your behavior, but you have to be hyperaware and make sure that you are taking those measures, if you do, in fact, come in contact with something like this during pregnancy.
>> SPEAKER:  So, possible outcomes.  There's a spectrum here.  Um, my daughter and Kristen's daughter were born more, what we would call more symptomatic, more severe, um, and, but a lot of children don't have any sort of outcome, or any sort of incidence.  So, one out of five children are born with permanent health problems, as well as 400 infant deaths annually can be contributed to that, so the spectrum here, I don't know if everyone can kind of read this graph, but, um, severe is death, miscarriage, still birth, infant or child loss, medically fragile, which is where Evelyn resides, as cerebral palsy, seizures, that kind of thing, and then asymptomatic is nothing is showing up, but there's a lot of different range here and what CMV can cause.  Do you want to talk about screening a little bit?  Okay.
>> SPEAKER:  So, in the numbers that we're using, one in 200, or 30,000 per year, 400 deaths annually, these are what we know about.  There is not great mechanisms for tracking data, and part of that is because we do not screen for CMV at birth.  So, um, pregnant women are not routinely screened, and in fact, they're rarely counseled about it before or during pregnancy from their OBs or doulas or midwives.  Newborns are not routinely tested after birth.  This has progressed in the last couple of years, there's some active studies going on that are multi‑institutional across the U.S., but it is, um, there is no routine standard of care, there is no routine practice in terms of how and what the methodology is for screening, so there's a few tests and trials going on, but, again, nothing concrete, and if you ask the parents, it's not good enough, so how can we help progress that?  Um, and CMV can only be accurately diagnosed within 21 days of life, the first three weeks, so it is critical, um, that we are catching and screening for this, if, for instance, the baby is symptomatic or if the baby fails newborn hearing screens, because that is usually a red flag for CMV, if there is no genetic disorder present that we're aware of.  
Um, after 21 days, the baby could have contracted CMV through nursing, because exposure to breast milk is sometimes, um, available to very small micro‑premies and pre‑term babies, and that is a potential acquisition method, but we're generally talking about the congenital CMV population who is acquiring the virus in utero through the placenta.  Also, states are piloting projects, they're collaborating with stakeholders, they're pursuing legislation, because this is the way that we feel that we can move things forward, if the medical community is slow to act, and we'll have some case study examples of what's currently happening and what may be able to work for your state.  Um, and then we as an organization are actually advocating for universal screening of newborns, and we want to be considered for the uniform screening panel, so we are submitting that application.  We have, um, over 30 letters of support from biotech, pharma, and other institutions who are on the same page, and that is, you know, in lieu of the hearing targeted screening that is actively happening today.  So, we are pushing for universal screening, we think it is critical for monitoring those kids who are born asymptomatic, the kids who continue to go on and have progressive hearing loss and who are not monitored and who are not evaluated for EI in a timely fashion and who will then, you know, pay the consequences in terms of developmental delay because they were not captured quickly and monitored appropriately, and their parents weren't counseled on what to do next, so that is, that, to us, is critical, that we think there's a lot that can be done between zero and 3, if we simply know about it. 
>> SPEAKER:  I can talk treatments, because I, um, I experienced it with Evelyn.  So, um, we, there is a couple of treatments that are available to parents that have children that have, um, very severe symptoms.  So, Evelyn and my husband and I were given the option to utilize, um, an anti‑viral treatment.  We actually chose the oral form of it.  She was on it, um, for six months, and we had a lot of, um, follow‑up and blood labs that happen, because it can cause neutropenia and a variety of other issues within a child.  It is, um, a heavy drug to take, but, really, it was what we wanted to try in order to see if we can curb the, um, I guess the instances of what we were seeing with her, so if she could get a little bit of her hearing back, perhaps, or, um, you know, just stopping the virus in its tracks, then we would take that risk.  So, we, um, we chose to do that.  It is parents' choice, to do it.  Um, this is not, um, I guess FDA‑approved for pediatric use, so they are careful about how they treat children with CMV or congenital CMV, but, um, we chose to do it, and I think it was the right choice for our daughter, um, and she did very well on the treatment, but it is, it differs for many different babies and what's going on with them.  So, um‑‑
>> SPEAKER:  Yeah, there's a few active studies going on to see if there are improved outcomes beyond hearing loss, and there's, um, a trial going on too, just specifically about, um, more asymptomatic babies and what the option is, once you have screened them, what do you do next, and there's a lot of controversy about applying treatment because of side effects, but there are some trials underway, and we are making progress here in terms of these treatment options, and I think that, you know, the importance is that you need to start this right away, and that is what everybody will tell you, which means that infectious disease has to be brought in immediately, and they should be working extremely closely with, um, the other specialists, particularly neonatology and/or, um, ENTs ‑‑
>> SPEAKER:  Genetics, yeah.  So, for us, with, um, just kind of talking about this, we, she was very symptomatic at birth, Evelyn, so they knew that something was going on, either genetically or virally.  We had an amazing team that kind of just swarmed in around her, and it was audiology and genetics and infectious disease.  Infectious disease was, as soon as they knew that she had some audiological, um, components, immediately requested that she have a congenital CMV screening, so we were able to diagnose her really quickly in the hospital, but I would not say that that is commonplace, um, because she had such pronounced, um, effects of this virus, that was one of the reasons why we had that kind of luxury.  If, um, a child is kind of falling, oh, into the hearing loss, but maybe they say it's fluid in the ears or something like that, and the child goes home, they run a higher risk of not being able to make that 21‑day threshold of being able to definitively say it's congenital CMV, so I would say we were really lucky that we had a great team, um, at the University of Chicago, but I know of several parents that just, they slipped through the cracks from a medical perspective.
>> SPEAKER:  And there is a lot of miscommunication about these treatments.  There's a lot of miscommunication about, um, transmission.  You know, I've had three babies in three different states, and after losing a child to congenital CMV, I heard, well, you don't have to worry about this again, you don't have a risk, zero risk, you'll never have to worry about this, and I would say that's actually incorrect, and let me tell you why, and why I'm educating this doctor, and pediatrics would round, and I would say now you need to screen my baby for congenital CMV, and they'd say, why?  You already have one, and I don't know how to do that, and I'd say you have to do this, and, again, why am I educating you on how to screen my baby and collect urine, for example, I don't know what I'm doing, I have no healthcare background, but you need to go to my website and go check it out and call somebody in your lab, because, you know, this is outrageous, but every time, truly, it was a fight to ask for screening, it was a fight to get educated on the subject and talk to my OB, because they were, um, very uneducated on the subject, quite frankly, and said it's not that serious, it's not that common, I've only seen one baby in my entire career, and, um, it's just all extremely inaccurate, for the fact that we have such a large network of people who, um, come from all sorts of diverse backgrounds and are largely educated and were never counseled on this, so, um, so we're angry, and we are, um, trying to do something about it, but there's so many misconceptions around this that, um, they'll say there's nothing that can be done, and the truth is that's incorrect.  Our babies are, um, amazing, and they're exceeding all expectations, so.
>> SPEAKER:  You can talk about vaccines more than I can.
>> SPEAKER:  So, why isn't there a vaccine?  So, in 1999, it was made high priority by the Institute of Medicine, but with that, there are a, there's a very long duration of cycles for vaccine, and we have not been prioritized from a funding perspective, um, at the federal level to pursue this, and I will say that pharma and biotech will come onboard when they think there's demand, but there's so many critical elements of CMV, it's a very complicated virus, um, it's hard to replicate, there's a lot of nuances behind this one, it's not as straight‑forward as other viruses, and, so, with enrollment for FDA approval, in each trial phase, the numbers are staggering, it costs millions of dollars, and, um, it's tough to enroll patients, if they don't know about CMV in the first place.  So, phase II, for instance, is supposed to be on humans, it's supposed to be on women of child‑bearing age to start.  They're still determining what the appropriate age group for this vaccine is, is it infants, is it, um, pre‑teen, along the lines of, um, HPV, 11 to 13ish, or is it women of child‑bearing age who have already had a toddler at home, for instance.  So, they're starting there.  It's hard to enroll, say, 24,000 women who are pregnant and say let me give you this trial vaccine, for a virus you've never heard about, and it's really increasingly common that these women are starting to be scared, and so that is the feedback that we hear, well, you're scaring women, and we don't intentionally mean to scare women, but we want to make them aware.  
So, how do we do that in an effective way that changes their behavior?  Ask them to facilitate conversation with their doctors, but doesn't completely freak them out so that they are truly scared of going around their toddler, scared of working with children, etc.  So, currently, there are two phase II candidates underway.  This trial will last for another few years.  We don't have any phase III candidates yet, and I believe that we will likely be, if one of the phase II candidates progresses, I think we will likely be at ten years out from seeing this in market, and it will cost over $1 billion to do so.  So, this is a major, um, ongoing critically important thing, but it takes and requires so many people and resources and funding, so that's where we are on the vaccine today.
>> SPEAKER:  So, really, our message is to spread the word, not the virus, and it's, you know, I hear what you're saying about scaring women, um, just to kind of allude to what happened these past couple years with Zika, women were very afraid of what was going on.  Um, doctors were being correct in their message to them of telling them how to reduce their risks of, and to, um, restrain their travel to certain areas and things like that, but they did it.  They did it because they're smart, and they're, um, they're protective of their babies, just maternally.  So, when I have spoken with women, um, they are very shocked, they are very scared, they are very enraged by why they don't know about this virus, but they are also, um, very good at implementing the hygiene practices that will reduce their risk.  So, something, you know, that Kim Hill talked about in her video there about her daughter Caitlin, we're already changing the way we behave when we're pregnant, um, not eating certain foods and not smoking, not drinking, all of these things that we're incorporating into our daily lifestyle, um, washing your hands and taking those proper preventions is not as demanding as some doctors like to say, or burdensome, um, I did it with my third baby, and it was relatively easy for me to do as soon as I kind of got into the swing of things, but, you know, it is about educating this population of women and giving them the power to be in control of their pregnancy and what is happening with their child.  Here we go.  Perfect segue, right?  Um, so, here's five simple tips on how to prevent CMV.  All of these, which I did with my third pregnancy, um, avoid contact with saliva when kissing a child, so a nice little kiss on the forehead is fine, or a hug, um, they will still feel your love, it's okay.  Um, don't put a pacifier in your mouth.  I don't even know how that horrid behavior became something, but, you know, same goes for utensils, drinks, straws, um, anything, I've heard toothbrushes, do not, don't share a toothbrush with your child, and washing your hands after changing a diaper, or, really, when you're coming into contact with anything that is, um, covered in bodily fluid, so toys and that kind of thing are things that I would do.  I just always had my hand sanitizer available when we're out in public, and washing my hands routinely.  Those are some tips.  I feel like we're flying through, and no one's asking questions, so I wanted to take, yeah?
(Off mic.) 
>> SPEAKER:  Sorry. 
(Off mic.)
>> SPEAKER:  Florida.  Let's talk.
(Laughing.) 
(Off mic.)
>> SPEAKER:  We are very far along.  It's a great question.  So, we are submitting for that, we were going to submit before end of year, and then Meridian Bioscience came out with the first FDA‑approved saliva swab, so we've changed a couple things within the application.  Our preferred methodology is saliva PCR, for a lot of reasons, but basically because there's a ton of data around the sensitivity and specificity of it, but also because data collection is typically a little bit easier to administer, and it's more cost effective.  So, if there is a positive saliva PCR, we would recommend a urine, um, follow‑up, to make sure, for confirmation, because sometimes, there is a false‑positive, for instance.  Those are absolutely the preferred method based on our scientific advisory committee and other experts in the field who have weighed in on our application, but that is going in in March, and we have over 30 letters of support, so we're, um, you know, from our community, from the medical community, from pharma, um, from chief medical officers of institutions, so we are hoping that at least we'll be reviewed and have some consideration, and then if it is not necessarily approved, um, at the get‑go, then we've received some great feedback that we can improve our application, but this is, um, certainly our approach to moving things along, knowing that the states are, um, strapped for time, strapped for resources, strapped for money, and they would like to see, you know, something roll out, um, else where sometimes before administering.  So, this is, um, we're moving full steam ahead, we're really excited, and we're very close.  Yes?
(Off mic.) 
>> SPEAKER:  Yeah, I think that, um, we've seen some groups meet with various stakeholders, so bringing parents to the table to show the practical application of this virus on their family has been really helpful, that story‑telling element of here's why you should actually learn more about this and counsel your patients, but giving them just little snackable sound bytes, because from what I understand with OBs, they have so much to worry about and think about, and they have two patients, right, baby and mom, that they're very worried about malpractice and liability, and they often don't have the breadth and depth on certain things that they should be talking about, so they don't want to bring it up as a liability, they are afraid of, um, scaring mom, they think that mom will likely not change behavior, and then, oh, yeah, there's nothing that can be done, and that's, you know, a generalization, I think, but, um, that is feedback we hear from the OB community a lot, and, in fact, I'm just going to skip ahead here quickly to just the policy and the position from ACOG.  So, um, ACOG used to have information about CMV in their practice bulletin.  This practice bulletin is released every five years, and then it is edited throughout annually about various things, and members from the CDC and other governing bodies also weigh in and edit and review all of these, um, statements and positions within the practice bulletins, but in 2000, we did have language in there talking about CMV disease and how to educate patients. 
 In 2015, it actually reversed the previous policy, and it stripped out CMV education recommendations from its practice bulletin.  So, you know, we, as an organization, um, with both parents and medical professionals, um, sort of responded to that, and there was a New York Times article with, let's see if I can find her, Ms.  Evelyn, Erica's daughter, and Erica was interviewed in it, and this journalist was actually going down a path about Zika, found out about CMV and said, wait a minute, CMV also causes microcephaly, and she said what is this virus that we never hear about, and she interviewed several of our parents, as well as a few of our doctors and really wrote a really profound article in November of 2015, or 2016.  Thank you.  2016, um, end of October, so it was a really great article, which, um, you know, was one of our first mainstream mass media publications in awhile, and it was really well‑researched in terms of the scientific evidence that she presented in the article.  So, with that, um, ACOG responded in December of 2016, because they couldn't believe that this article was published in the New York Times, and two OBs that serve on the board wrote and published in Med scape and said that, yes, there's still, yes, this is a virus that we should consider, but there's weak research, and we need a trial of the impact of hygiene measures to prevent maternal acquisition of CMV, so sort of calling out, like, we need more studies and data to understand that behavioral intervention, in which several of our doctors responded and said, great, we'll throw a study together and apply for a grant, and one in particular sticks out, Dr. Karen Fowler at UAB went ahead and did a behavioral study of a cohort of women in Birmingham, Alabama, extremely diverse group, and followed the behavior, created interventions, starting with before pregnancy, you're sitting in an OB's office, you watch a video about it.  
Then during pregnancy, every visit you go in for prenatal care, you're give an sheet about it, and you're filling out facts sheet and checking, you know, are you doing this, are you not doing this, those kinds of questionnaires, and you're counseling the women at point of care, and she saw considerable impact.  I don't have the paper here, but it is available, and she shares it as a poster presentation at several, um, infectious disease‑related conferences.  So, um, that is one small cohort, and then I just learned that, last week, in Europe, there was a conference regarding CMV, and there was a Japanese paper published that is, um, I believe it was over 20,000 women they followed with these behavior counseling tips, and the rate of incidence significantly decreased, so I think there is a connection there.  I'm sure we need greater data.  The truth of the matter is is that there are studies that exist, and we need to leverage that and extrapolate that and just start incorporating it into practice at this point, but OBs are difficult, it's a tough population, and we're taking that sort of bottoms‑up approach by getting individuals onboard at this point via, you know, round‑tables and that sort of thing and just personal one‑on‑one interaction and asking these doctors to take into consideration within their practice of doing some of this, and it's going a lot better than, um, meeting with large groups, for instance.  It's been very tough, and it's very political. 
>> SPEAKER:  What state were you from again?
>> SPEAKER:  Nebraska.
>> SPEAKER:  Um, perhaps we can reach out to some families, and I know Andrea has, so, behind you, Andrea is working with the National CMV Foundation to try to come up with, um, a directory of parents with children with CMV, so, um, you can reach out to her as well.
>> SPEAKER:  Yes.  Um, Kathleen?  Oh, wait.  Then right here. 
(Off mic.) 
>> SPEAKER:  You're exactly right.  You know, the conferences that I've attended that are specific to CMV, um, generally will have one or two maternal fetal medicine specialists there, so it's very rare that we're receiving mass attendance from that group, but they are more inclined to attend than a general OB.  I do think that's a population we should explore.  Um, another one that we have actually started to incorporate, um, is going to ACNM and talking to midwives and nurses.  They are not confined to the same restraints in terms of counseling and education as, say, an ACOG member, and they are very, very receptive, so they, um, they may lack resources, but they are borrowing from our materials, we are co‑branding things together, and they're extremely knowledgeable on the subject, because they are really having in‑depth conversations with their patients and really tracking the pregnancies at, um, just a greater rate in terms of what they can give and devote to their patients, so that is an absolute population that should be touched and explored further as well for collaboration.
>> SPEAKER:  I was just going to tail on to that.  So, bringing, I think, um, a credible infectious disease doctor who has either been treating, um, children with CMV, um, researching the instances, that kind of thing, can be a huge benefit as well, so if you're having, sometimes, doctors just want to hear from other doctors, you know, and I think that the parent component is so important, but then they can talk, you know, outcomes and incident rates and medical prevention and how they're, as kind of a collaborative medical community, can, um, work together on this too, so, um, having ID as apart of the conversation, I know a couple of IDs at the University of Chicago who have been completely outspoken about congenital CMV, they want to work with audiologists, they want to work with neonatologists, they're very, very eager to become apart of the conversation, just because they know how serious and common this virus is, and they want to be the advocate in the medical field to take some charge on this.  So, um, I think that would be very helpful as well.  Mm‑hmm?
(Off mic.) 
>> SPEAKER:  Yes.
(Off mic.) 
>> SPEAKER:  Awesome.  Thank you, and I will say, you know, we do a public health and policy conference specific to CMV every two years now, we've had three conferences since 2014, and the feeling in the room from all of the medical experts was, no, absolutely not, universal screening will never take off, it's too cost prohibitive, we're going to scare people, we don't have a measure, you know, etc.  Um, two years later, it was sort of a skewed panel that said, hmm, I'd really rather go down the hearing targeted approach, I think that makes more sense from an efficiency standpoint, and then fast forward to 2018, and everybody on the panel, including those in the room, including folks from CDC, said universal.  So, I really do think it's been a major shift in what is acceptable.  Also, I think that there is some data around the cost measures for this and that, you know, what is the cost of this test and ongoing evaluation and monitoring of kids versus the long‑term effects of a child who has very symptomatic severe outcome from CMV.  So, weighing that and talking about, well, you know what really scares moms is having a baby with special needs that's medically fragile, that's scary, so, talking to them about a virus is not that scary, right?  So, they can handle it, give us the information and let us make decisions to the best of our ability.  
So, I think those are great points, and I did just want to touch on too on what's AAP's policy.  Um, we don't have this national standard of care, as we talked about, regarding screening intervention therapy or treatment, which is, I'm sure, in your roles, what is extremely difficult is that, okay, now you've identified a baby with CMV, how do you monitor them, which database are they flagged for, they have complex issues, which categories do they fall into, what services can we give them, and then how do you continue to monitor them through the process.  So, um, so we hear those frustrations, we understand the concerns, and I think tomorrow, in the state stakeholder meetings, this would be a great topic to bring up.  If there's a database, can we add a filter, can we track these kids.  So, again, the considerations are really between hearing targeted and universal at this time.  A lot of states aren't doing anything, but some are doing one or the other.  Um, methods are unclear.  We are pushing, again, for saliva PCR, but everybody has a different approach, there is no standardization at this time.  Um, there is a study coming out of, um, Mississippi, and that is around dried blood spots, so can we streamline this even further and confirm, um, CMV with a dried blood spot, just simply one more test with the, um, you know, with the Guthrie cards, so that is a possibility.  I think initial data looks promising, and I'm really looking forward to seeing some of that data published later this year as well.  
Um, talking about the cost effectiveness, of course, that's always the number one.  We can't take this on, our resource lab is, you know, completely confined, um, and working with the newborn screening team within the states has been, um, everybody's receptive and wants to do it, nobody has the time, money, energy, resources, so it's difficult there.  Um, and then treatment, as we talked about, um, and there are some experimental drugs that are actually coming up, and I've heard a few chats about them, and they do seem promising as well, so to have variety would be great, to have less severe side effects would be great.  Um, some additional, um, data needs to come out of these studies, but they have appeared promising, and then there is no standardization of protocol for once you do identify a child with CMV, especially if they are more asymptomatic, so, um, Dr. Albert Park, who is of Utah, he was instrumental in the 2013 legislation for Utah, it is the first mandate that went into effect, that if a child fails their newborn hearing screen two times, they are automatically referred for a CMV screening, and it also includes, um, language around education of women.  So, Utah has been, by far, the most proactive in this nature.  They were the first bill, they actually have, um, a fiscal note attached to this, they have employees at the state Department of Health that are dedicated to CMV, they've produced a public health campaign through outdoor advertising, and Dr. Park has been instrumental in all of that, and he serves on our board, and he has, um, as part of other studies that he is currently doing, has come up with the following protocol for those who fail their newborn hearing screen, and he has a lot about this.  So, if this is something that should be circulated within this group, I'm happy to share it with his permission, and we can talk further about that, but this is sort of his, um, his ongoing cadence in terms of frequency for monitoring.  Yes?
(Off mic.) 
>> SPEAKER:  Yes, definitely.  For us, it was because, um, my daughter was so complex, it was an immediate referral, so they did do a, um, a quick screen in the NICU, for instance, for retinitis, everybody's worried about that immediately, so when we received the news that that was not impacted, we actually thought we were in the clear in terms of vision.  We did not understand, at that time, that there could be other involvement, so that was a miss, in my opinion, um, but we, um, I believe at 3 months, went into sort of infectious disease, who said I need to refer you to ophthalmology, and, so, that was the first time I had really thought about that, and we did our own ongoing monitoring with them, they would tell us their protocol, but I think it was very individualized.
>> SPEAKER:  So, I think, um, just to speak as a parent with a child with CVI as well, it was a miss as well for us.  We were given a referral to ophthalmology, we went to ophthalmology, same song and dance, you know, she tested negative for retinitis, um, and I thought everything was great, and, um, just because I wanted to keep follow‑up going, I just kept on going to the ophthalmologist, getting routine, um, testing and scans of her eyes.  She did have, um, and she currently still does have something called rotary nystagmus, so her eyes are moving, and she has the, um, I can't remember the medical term for it, but her eyes move separately from each other.  You guys probably know that.  What?
(Off mic.)
>> SPEAKER:  Yes.  Sorry.  It escaped me.  Um, and, so, we went to ophthalmology, he was very dismissive, um, you know, just more of, like, okay, you know, she has a little vision problem, but nothing to be scared of.  We were receiving no vision therapy through EI, you know, it was just kind of a, I don't know, it took a back seat, right?  I would say her hearing was much more of the focus in terms of her sensory, and cognition was, you know, another thing, but we changed our ophthalmologist, actually, just recently, within the past couple of months.  She immediately gave her a CVI diagnosis, and we have instructions for further follow‑up on that and working with her therapies and in school, that kind of thing, um, just had a meeting on Friday with, um, the director at the school to talk more about vision and vision therapy and adding it to our IEP, so there's just a lot of, like, things that got missed, in a way, and, um, not saying that it was not important or anything, it just, I feel like they weren't bridging those gaps and talking to us parents, um, about it.  Yeah, are you a vision ‑‑
(Off mic.) 
>> SPEAKER:  So, I just spoke to a group of DTVs two weeks ago, and they had a lot of questions about how they can be more, um, influential in that conversation and trying to make sure that the parents understand that there's, there can be latent effects, there's all these different things, you know, so there's just a lot of conversation that does need to happen around vision, and I would say that as knowledgeable as I was and how much I was trying to keep myself abreast on everything that was coming out about CMV, I didn't devote enough time to the vision aspect of it.  So, it's ‑‑
(Off mic.) 
>> SPEAKER:  Well, a lot of it is our job, right?  That's why we're up here.
(Off mic.) 
>> SPEAKER:  And we have some, there's some statistics on National CMV Foundation's website about the vision component of that, but I feel like, you know, obviously, more data is something that we always need.
>> SPEAKER:  It influences decisions, right?  If you have a child that's hard of hearing, you know, and ASL is not an option, then what decisions do you make for your child to make sure that they are integrated and can communicate in some way with the universe?  So, um, it's a very personal decision in how you proceed with that, but if you're not equipped with the information about your own child and what services are available, etc., um, it's really prohibitive, and it makes us crazy, right?  And that's why this is parent‑led a lot of times, because nobody is connecting the dots that is working on the team.
>> SPEAKER:  Sorry if anybody was using the CART microphone that people have been asking questions on, it was not connected to CART, so it is now.  I'm sorry.  It's back up and running.
>> SPEAKER:  I just wanted to follow‑up on that last point again.  As a medical educator and someone who has a child who is deaf‑blind, the definition, and you guys can speak to this probably, of a symptomatic infection is maybe something that needs to be revised, because my understanding is that most ophthalmologies, for example, who you might be speaking with about vision don't really understand CVI, and it's sort of, it's a brain issue, right?  So, the brain doesn't process images the same way, it's a cortical visual impairment, so who diagnoses that?  So, is that an education issue?  Is it a who does this fall under issue?  Can we revise it?  I think it's wonderful, because a lot of our kids need that special support through schools and early intervention, and my child has eye gaze technology and has no real functional use of his hands, has cochlear implant on one side and high risk of losing his hearing because of CMV, these are issues that, I think, are really important for getting people onboard.
>> SPEAKER:  Yeah.
>> SPEAKER:  Sorry, I had to go to my neurologist to find out what was going on with her eyes.  So, you know, that was another tricky thing for me to try to navigate.  You are left to your own devices to do a lot of diagnostic by yourself as a parent.  I'm sure Kathleen can attest to that, um, but I didn't even know, I mean, I knew it was something with her eyes, but I was like, this seems neurological to me, so went to the neuro, they referred to the, um, ophthalmologist and all that, but throughout EI, we never received vision services, which was really strange to me, and I kept on bringing it up in all of our, um, meetings, but ‑‑
>> SPEAKER:  That's our super star mascot of the day.
>> SPEAKER:  Yeah, this is Axle.
>> SPEAKER:  That's Andrea's beautiful son, Axle.
>> SPEAKER:  So, I'm Tia.  I currently live in Michigan, but my daughter is CMV, and she was born in Delaware, and I was a miss also on the vision.  She was symptomatic, and they caught it right away, 15 minutes after birth.  She was symptomatic.  Um, so, with the vision, the only thing that was caught was my profession.  I'm the one who did all the follow‑up with her and took her to a different ophthalmologist, because she did pass the retinitis test, and we continued to go, and, um, I'm the one who said, oh, she has nystagmus, and my pediatrician looked at me and said how do you know this, and I said because I'm OT and I've seen it.
>> SPEAKER:  Wow.  You have a lot of baby face‑to‑face time, and you're looking at their eyes, looking back at you, and when they're moving around ‑‑
>> SPEAKER:  Yeah, I was breast‑feeding and said, well, let's see, and he said you're right, and back to my ophthalmologist who told me, essentially, surgery at age 6 would fix it, and we needed to wait until 6, when she would start reading, maybe, because she was supposed to be 9 months cognitively developmentally, and that's what I left the hospital with.  So, I will tell you that I am a very blessed parent, and she is significantly higher functioning than that.  She goes to regular school, but had it not been my professional background and following up on that, they would have never done vision training with prism glasses, and it delayed gross motor skills, it delayed her walking, um, visual access was very important for us, but now that she is 15, that dual diagnosis in school is not just important with early intervention and education, it is so important with later on education and access, because they do focus on one or the other, and it has been an ongoing fight with IEPs, and they will focus, okay, well, we have the FM system, and I said, okay, well, when are you blowing up all of her school work, and now you have a teenager who may say, it's okay, don't blow that up for me today, and I don't want to look different, so there becomes dual battles with education, so I think the education system needs more education on these dual diagnoses and how we access these children.  So, I definitely promote beyond early intervention, but we need to get it started somewhere to get it continued on for all of these kids.
>> SPEAKER:  Awesome.
>> SPEAKER:  My name is Hannah, and I'm an audiologist at the University of Minnesota.  I work with Dr. Schlice on some of his work.  So, I think our department is very fortunate in that we have him as a guide to guide us through what referrals to make, but I also feel like audiologists are in a very unique role of having that education of what nystagmus is, so it's important that any child with sensorineural hearing loss have that referral, and whether they're going to an ophthalmologist who is qualified to make those further diagnoses, I don't know how to fix that, but I feel like having those referrals in place for any new identification of sensorineural hearing loss, whether it's to consider the risk of Usher's or if we know they have CMV and other things, that's something, that's a role I feel like the audiologist can play in educating, maybe the ENT, who they then see for the medical clearance for hearing aids or for just putting that in the parents' mind of these are some of the referrals the ENT might make, if they don't make those referrals, make sure you're aware that these are some of the things that me, as an audiologist, that I'm considering and kind of the differential diagnoses that we're considering as far as we know about the ears, but what else.
>> SPEAKER:  Right.  That's great.  All really good points.  We'll have one more.
>> SPEAKER:  Hi.  I'm Jane.  I'm a pediatrician, and we are from the Pacific Islands, from the Marshall Islands.  This is the closest island to Honolulu, and we are also doing Early Hearing Detection and Intervention, and, um, my previous experience as a pediatrician was, um, part of my screening to patients, to newborns, who had prolonged jaundice is to work them up, and that includes cytomegalovirus, and from my experience, I have found several newborns who have CMV, but because of constraints of financial, um, availability, as far as treatment is concerned, we just, the Early Hearing Detection and Intervention was started in our place and was part of the newborn screening, and we have newborns who have failed the test, and we just monitor them closely and refer to our audiologists, who comes from the University of Hawaii, and they come to our island twice a year.  So, listening to all these CMV viruses causing hearing loss, I made a suggestion that CMV testing be part of, um, the screening as far as the newborns who fail the hearing test, and, um, it's still in the process of, um, approval, because the number one problem is budget, but I'm looking for word that they will approve it, and, um, the next, um, problem that we are going to face is availability of treatment, which I know is very expensive, but like what we have been discussing, it's prevention and identification.  
As far as prevention is concerned, it has been part of, we have some pictures of pregnant, um,a local pregnant woman with a child, and it's, um, like, um, translated in the local language for our mothers to understand.  We are still in the process of starting it, but we look forward to, um, having it approved.  So, that's it, our next problem, probably, is for the testing, because we are looking into the PCR saliva test, but Hawaii laboratories do not do the test, so I would appreciate it very much if you can help us out as far as identifying the laboratory which can do the test.
>> SPEAKER:  Excellent.  Yes, I will take that note, because I think that we have some professionals within the U.S. that can help us with that.  Um, it's so interesting, hearing everyone's experience, because it is so unique and so specific to your region sometimes as well, so I appreciate you sharing, and we'd love to hear more.  For the sake of time, I will move into the CMV awareness.  We always hear, like, why don't we know about it, why isn't anyone talking about it sort of thing, and, so, we did a study, as I mentioned previously, um, the CDC used to run this study, and they discontinued it after 2010, so we picked it back up in 2015 and 2016.  Um, the bad news is that the awareness rate continues to trend down as compared to other, um, genetic and viral infections.  So, this is, as of 2016 data, um, through the health style survey, and this is CMV as compared to others in terms of awareness rate and the rate of incidence.  So, um, our CMV awareness rate right now currently is 9 percent amongst women, 7 percent amongst general public.  That has gone down almost 10 points in a decade.  So, um, it is concerning.  You know, we do know that new diseases, especially infectious diseases globally, are coming up, popping up, there's greater awareness, sometimes greater funding, greater campaigns, greater media attention, um, so we recognize that we are competing in a highly cluttered world of lots of things going on, but, um, this is disturbing, and this is sort of what the uphill battle is, and if you'll look, the rate of incidence is extremely high, and these are, again, of course, only the babies that we know about.  Um, this is just simply detailing the research in terms of the number of women surveyed, the number of people surveyed over time, and the awareness rates.  
So, you know, 2005 was 14 percent, it was higher than that, um, in 2000, and then, um, in 2010, in 2015, are largely the same, but in 2016, we're at 9 percent of women, 7 percent of people in the U.S.  Here's just simply the trend, in case you didn't catch that it's going down.  It's, um, again, very disappointing, and we also asked a follow‑up question, what is your preferred source of information for healthcare‑related news, medical news, and by and large, we've heard this time over time, that people want the information from their healthcare provider, they want it to be credible, they want it to be accurate, they want to have that face‑to‑face touch point, and they're not getting it, quite frankly, in all aspects, and they're not always feeling comfortable to ask these questions, and they're ending up having to push for services, for treatments, and for referrals.  Um, family and friends always, you know, people love to hear personal stories from others and get recommendations about how it really is and what they should be thinking about during pregnancy, etc.  Um, the Internet is kind of a black hole of scary stuff, but there's also a lot of accurate information out there that people are taking upon themselves to find.  Books, materials, and then, um, the insurance companies, which is, you know, an interesting model, and maybe there's something there in terms of partnering with them as well to get the word out.  We touched on Evelyn and this exciting article and the policies as they stand today, and then what are we doing about it?  
So, what is the organization that I work for doing about it?  Um, I sort of talked about our history, we are going into year five of our existence.  Um, we have two staff members, nine board members, and about 40 volunteers that are all, almost all parents of CMV kiddos.  So, as you can imagine, our network is very busy.  We have people with full‑time jobs who may or may not work in this profession.  We have CMV parents who are not only juggling regular typical children, but also atypical children who are medically complex.  We have children, or parents who are grieving children, and then we have parents who, um, perhaps have not been touched by this, but perhaps had a scare or knew about it during pregnancy and were outraged by the lack of counseling, so we have a wide variety of people who are helping us day to day, and they're doing a tremendous job, but it is difficult in terms of moving full steam ahead in terms of what's required.  So, this is where we're focused as an organization.  We want to prevent CMV infection in women of child‑bearing age, and how are we going to do this?  By empowering women and others through grassroots engagement.  We want to facilitate conversation, and we're going to have to champion the cause.  If we cannot get the healthcare providers to initiate the conversation on this or counsel women at point of care, then we are going to start asking the question what is CMV, how do I prevent it, what do I need to know about it.  I think with that in mass forces, we'll start to register with healthcare providers, I need to know more about this, and maybe we should be having more conversations.  That's what I'm hearing at the individual level anyway.  
Um, delivering consistent, clear messaging, evidence‑based data, so, um, there is a ton of data, there's a lot of studies out there, but, um, I don't think they're shared well, I don't think people know about them, and we're not leveraging them in whole, since it is, there's so many different outcomes of this viral infection, so I think that there's a lot of knowledge‑sharing that needs to happen, and if we have to facilitate that, we're happy to, and we also want to influence CMV research priorities, because, yes, there's a lot of data available, but there could be more data, and there needs to be more data, so, um, we're doing that through, um, not only public health mini grants in which we are funding organizations in states, but we are also funding mini grants for early investigators, fellows, etc., to who are interested in maternal or congenital CMV and advocating for a vaccine.  We are partnering with several companies and trying to get them to understand, um, what we're dealing with as parents and what, um, people are talking about, um, outside in the early intervention state Department of Health networks that we're associated with, and that is very helpful to their research as they move forward.our top three areas of focus for influencing public health policy are around awareness, education, and screening.  Um, how are we doing that?  Awareness is a lot of that promotion.  My background is marketing, the reason I got into this is I thought this is an awareness problem, that, I can help with.  Um, Erica is actually a marketer as well, and we do have people within our group who are very, very helpful.  We have advertising agencies that have come onboard who are offering pro bono services, but, you know, again, it's, it receives a fraction of time that it probably deserves, and it's because we're all doing the best that we can with all that we're juggling, so there is huge opportunity here to really create, um, some really strong messaging and some really compelling creative and get a public health campaign out there, and we are currently working on one, but we've also done a lot of relevant speaking engagements, our board members have gone out to various conferences and spoken on behalf of CMV and their research, you know, we sponsor certain conferences, we participate in special events, and we're supporting our parent community through story‑telling and giving them a voice and allowing them to support us when they can, in various capacities based on their expertise or interest, and we're creating a lot of educational content, because some of the feedback we've heard is that, you know, institutions and/or departments of health would love to have a flier on it, but they don't have capacity, they don't have money to dedicate to putting something in development and then production, so we co‑brand a lot of materials with those who are interested, and that is certainly an opportunity when we leave here, if anybody is interested in doing that further, we have a lot of examples in which we've done that successfully so far, and we're partnering with these various groups in education for the creation, dissemination, and distribution of the material, and for screening, again, advocating, so, you know, we talked a lot about the RUSP and how this is greatly parent‑driven, and we'll talk a little bit more about state legislation, to see if this is something that is applicable to you guys and is something that is an area of interest or something may be underway in your state that you are aware of.  
We've had a lot of successes, we've had a lot of learnings, we've had different approaches based on the needs and the groups that are involved, and so we'll kind of provide a little bit about that.  Um, just some samples of awareness‑related material that we do pass out, just simply talking about CMV and then here's some materials that are available on our website for download and, again, can be co‑branded, you know, for various populations.  So, our priority target audiences that we're working to educate are the general public, which is largely women of child‑bearing age, healthcare providers, because, as you've heard, there's a lot of, um, not correct knowledge out there in terms of what's accurate across specialties, and then, um, childcare providers is a huge audience we're trying to target.  There's not a lot of education there, and too many moms or daycare providers or preschool teachers, etc., acquire the virus likely that way, so those are the three typical audiences that we're targeting.  Um, we have made some headway, which is great.  The CDC did not have a whole lot of material on their website earlier in 2018, and they now have a dedicated CMV resource, who is fantastic, and we love working with them.  Um, they made CMV the disease of the week in June, which is awareness month, which was tremendous.  We get the opportunity to weigh in on their material, ask for Spanish language, fliers, etc., that they will post.  We can only do so much.  We are credible as an organization, however the CDC is much more, and the state Department of Health is often much more, and, so, the co‑branding and figuring out how we can help support those efforts for you, um, is a partnership opportunity, so we are thrilled to be working with the CMV in a capacity in which they're developing more and rolling out more content on their website, and they have now put prevention information back on their site, they have fliers for that, and they have educational materials for healthcare providers as well, which is new this year, so really exciting stuff, and we hope to continue to develop that relationship.  It's easier to see up here, but this is sort of the map of our legislative efforts.  Again, these are really usually parent‑driven.  
Sometimes, there is a connection, whether it is an ENT or a pediatric specialist in other capacities who says I want to start something, let's get a bill together, and we do this with a multi‑collaborative group of disciplines and industries, and we bring groups together and get stakeholders onboard and figure out the best bill for that state, and we only provide, um, sort of that connection of people and some support and advice as needed, but, really, everything is so state‑specific, um, that we sort of, um, act as a consultant in that role, I would say, and these are the states, um, where there is law.  So, the orange are where there is sort of a unique special law in place, I'll talk a little bit about that, the, um, the lighter blue is where there is a law proposed, the dark blue is where there is a screening or education law enacted, and then all of the lighter, the gray, um, is where there is stakeholder interest, people have reached out to us, they've already started meeting with groups, meeting with teams, they just simply may not have a bill drafted at this point.  So, won't get into detail here too much, but the summary of state mandates, so we have law in 11 states currently that is specific to CMV.  Four states require both education and screening.  New York was the most recent to pass, just early this year.  Um, nine states require the state to educate the public and professionals about congenital CMV.  Tennessee requires healthcare providers to educate women, and then only Utah has the fiscal note attached to it.  Idaho has proposed one that has not yet passed, but, obviously, the dollars attached to it help with roll‑out in an incredible way, and we'll talk about some of the challenges for the bills without dollars attached and where those currently stand and the work that needs to be done.  
Um, from a screening perspective, um, there are four states that require, um, newborn hearing screening, those who fail a newborn hearing screening to be tested for CMV.  Illinois requires that it's offered to the parents of the child who fail their newborn hearing screen, so that the parent can make that decision, and we have a few proposed that are currently pending.  We've had, obviously, a lot of change in the political climate the last few years, so some of that, you know, that relationship‑building that has happened over time, um, has either changed or gone away or support for something else has come up, so some of these are pending currently, and then, um, Virginia went very quickly, and that was completely driven by a group of ENTs, and, um, they are through appropriations, and I believe something is sitting on the governor's desk, and we really hope to see that come into fruition, but that is for targeted newborn hearing screening state‑wide.  That came about in about three months time, which is rapid, to say the least.  The others, um, Ohio has simply gone to governor and said we want to make June CMV awareness month.  They had a sponsor of the bill, and that was a mandate.  Some other cities and towns have done that as well, but that's just great, to have it put on the calendar.  It is one easy avenue for getting some sort of awareness.  
In 2017, Maine proposed universal newborn screening, they went for it and went for it early.  While that did not pass, they did convene a committee that was, um, proposed and led by the CDC, representative within the state, so they established a commission, they met four times throughout the year, and it was a group of almost 20 individuals that were multidisciplinary again and one parent, and they came up with a methodology around the approach of what they wanted to move forward with for legislation next round, and they landed on, um, a preferred universal screening, and here's how we're going to do it, and it was tiered out, and their recommendations that are going back into legislation in 2019, um, are up on our website, but, really, they did publish a consensus, and it's very thorough, and it's a great place to start, and I will say California followed suit with that model of creating a consensus sort of team, a collaborative team that could come up with consensus over the course of 12 months, it made it all the way through appropriations, it was sitting on governor's desk as of September, and somebody along the way tacked on a $200,000 note to the bill, and it died there on the desk, because California does not have $200,000 to create a commission to talk about CMV.  Um, it's been extremely disheartening for our parent group there.  They were really, um, excited about it, they had huge momentum, and outside of their control, um, you know, a fiscal note was attached.  Maine would tell you nobody needed any money to meet or have teleconferences to talk about this, so it was a little bit upsetting, that they wanted to hire resources, etc.  
I will say Florida is doing this a little bit, um, informally.  We have a, we're calling it the Florida CMV collaborative.  It's been driven by one of our ENTs.  He has incorporated the EHDI coordinator, the state Department of Health team, newborn screening, myself and other parents, and then a lot of leading experts in not only public health, but ID, pediatrics, etc., so we have a team of almost 20 people who are now meeting four times a year via teleconference and talking about learnings and what's protocol at your hospital and trying to knowledge‑share, so that maybe we can either come to a consensus ourselves and roll something out without legislation or figure out a way to find a sponsor, to draft a bill, and agree on what is that, is it hearing targeted currently or do we just go for universal based on the data that's available and what people are seeing within the state.  You know, Florida's a huge state, the fourth largest birthing numbers, it's a big opportunity to collect some real data about children with CMV.  So, we are doing it a little bit informally, and it's taking a long time, um, but that's sort of where we are, and I want Erica to sort of share her story in terms of Illinois, since here we are and sort of talk about what drove her to do it and where we are today and some of the challenges associated with it.
>> SPEAKER:  So, um, as she kind of touched on, so, the legislative process sort of started, um, two years, it was two years in the making, and it was really just driven by, um, our frustrations as a family of not having more awareness out there, and I was watching intently with what Utah was doing and proposing, so that really piqued my interest, so we just kind of went for it out of the blue, and, um, I can actually, there's, this is just more about my personal journey with it, but, um, I will move through.  So, this is the seven reasons why I outlined that we needed a bill or some sort of legislation.  So, as you all know, CMV is a very serious threat to our public health.  It isn't discussed by doctors routinely, it's not known amongst the general public, it's not universally screened.  It's a known cause of hearing loss, um, but not typically tested, and, um, it can be treated and early intervention can be, um, a fantastic opportunity for these parents, if it is diagnosed, and then, obviously, the biggest one is to prevent more babies from being born with it.  So, those are my main reasons.  So, here's a little bit of the journey and how we got there.  Um, like I said, I was inspired by Utah and everything that was going on there, and I started working with representative Elaine, and she drafted legislation based on the Utah bill, we pretty much took it verbatim and introduced it, and it was met with a lot of, um, dissension, so then there was killed before it even reached the health and human services committee.  
Um, but kind of reinvigorated the following year, um, I, we were working together in collaboration with a lot of different government organizations and officials to try to draft something that would be, um, I guess a good meeting ground, to take hold of this issue as a public health issue and really draft something that was going to be implemented.  Um, so, we went back and forth for a long, long time, drafting and rewriting and, you know, all these amendments that had to come up, but, um, I officially testified on behalf of the legislation in March 2015 in front of the health and human services committee, and they pushed it through, the house passed it unanimously, um, at the end of that month, and then by April of 2015, our, um, bill passed the senate unanimously as well, and then in 2016, Governor signed it, and it became public act 099‑0424, like, sounds really interesting, why we would choose to name it that.  The funny reason behind that was that it would not be noticed in case things started being chopped off the block or something like that, so we, a lot of these legislative pieces and components have, um, you know, a name of a person or an honorary title, kind of, and we chose not to do that at the discretion of, um, the representative, just so that it would remain in effect for longer.  So, little tidbit I learned, and then the law was enacted and effective January 2016, so it's been in place for about three years now, and that's a picture of us standing at the House desk, I guess you call it, and as she sort of mentioned before, we have a two‑piece legislation, so two‑part legislation, and it outlines the awareness program through the Department of Public Health to help educate women about the dangers of the virus, with materials that should be given by their doctors, and also, um, that hospitals have to give parents the information and option to test, if their child fails their two newborn hearing screenings.  
So, um, our work is not done.  It is a opt‑in program currently, what I just mentioned, so if a parent, um, has a baby who fails both of their hearing screenings, it's up to them to say they want to have the screening done, and I would like to move that out to it's an opt‑out program, similar to other states, so it's just this is the routine that's going to happen, you know, we're diagnosing some sort of hearing loss, so now we're just going to move to a CMV, um, detection screening, and then, um, we need appropriations, we need a fiscal note, to support our educational efforts, and in a clinical and public environment, I didn't want it to just be living within, um, a clinical kind of domain, I wanted it to be more public awareness, so reaching people in their day‑to‑day instead of just in their doctor's office, both are important, and then also working with EHDI and DPH and obtaining data and mandated reporting around this.  So, right now, um, originally, our bill was drafted with the language that they would have to report incident rates, and that was stricken from the, is that a word, stricken?  Struck from the, what?
(Off mic.)
>> SPEAKER:  I was right?  Okay, it didn't sound right, but it was stricken from the wording of our legislation, unfortunately, and it was kind of a, um, a couple weeks of aggressive discussion around that, and we were just unsuccessful at keeping that as apart of the bill, but, you know, we were told the Department of Public Health would be able to still report on numbers and that kind of thing, but there's a lot of work to still be done there.  Um, then receiving support from medical societies, I know this is, like, my eye in the sky unicorn dream, but we really do want to work with, um, OBGYNs and people who are in a clinical environment, um, healthcare providers, medical professionals, therapists, um, that can really speak to this and work with, um, parents as a collaborative group and give it the, you know, the focus that it deserves, and then I also want to bring together a coalition of Illinois parents.  So, Andrea and I have kind of started this, we have a little Facebook page, I should be better on it, with posting updates and different things like that, um, but trying to come together and build a team of Illinois parents here that would, um, be able to help get this off the ground and really strengthen what kind of legislation we have here in Illinois.  Um, I think universal screening is always the goal, but for some of us parents, that's just not something we can sit around and wait for, we really want to make a change now, because we know that the outcome, if we don't do something, is more children being born with this virus.  So, I think that's the biggest driver for us, is that we just need to act in some way, shape, or form, and I'm very thankful to Sara Doutre, um, in Utah for her guidance and support and helping me navigate the whole legislative process, because without her and what she was doing in Utah, I would not have been able to get this off the ground, and, yeah, that's the reason why we have a law today in Illinois.
(Applause.)
>> SPEAKER:  Oh, thank you.  So sweet of you. 
>> SPEAKER:  So, I did want to bring attention to the state advocacy guide.  Sara Doutre, who Erica mentioned, serves on our board, and she was the parent who brought this to her mother, who was actually the representative of Utah who moved forward with this legislation piece.  So, she put together this advocacy guide, it lives on our website and gives a quick FAQ how to do this, so if anybody is looking, in fact, of what's next steps, whether or not you want to move forward with legislation, this is a good place to start to just think about all of the various steps that are needed.  Also, just simply what are the benefits of doing legislation from our perspective.  You know, it's largely parent‑driven, so the parents kind of bear the brunt of a lot of it and move a lot of this forward, take the meetings, educate the stakeholders, bring people together, but we're eager and want to do it.  Then also, we're nudging.  We like to nudge and push for progress, so if we need to be the person that's doing that, whether it's public health agencies or state institutions or, you know, individual doctors, etc., to join the conversation, we're willing to do that as well, so it brings people together more often than not, and it really is a good conversation‑starter for what is next within the state, what can we handle, again, whether or not you decide to pursue, but these are some of the benefits of talking about it at a high level, and some of the challenges, right?  
So, legislation is not always well‑received by local or state organizations, and in fact, it's often blocked or someone will dissent while you're in the house, giving your spiel, people from the medical association or AAP, etc., has often dissented, so, um, that's a challenge, if you can't get that state representative onboard to champion your cause from the get‑go, be prepared for that.  Um, lack of funding is major.  Lack of standardization, um, across practice settings, so even though the state maybe has mandated something, the various institutions haven't confirmed roll‑out, and everybody's doing it differently.  That's certainly difficult.  Insufficient training, as well as just a general misunderstanding, um, as to why this is important in the first place.  So, these are some of the challenges associated with getting our messages out there and getting legislation to fruition in various states and some of the learnings that we've had, since every situation is so incredibly unique, every state has so many different processes and people within its belt.  So, we're going to spend the second half of this session on what are we going to do about it and get you guys engaged.  So, let's take a 10‑minute break, and we'll meet back here in 10 minutes at 2:50. 
(Break Taken.) 
>> SPEAKER:  Guys, we'll get started again.  So, Andrea is passing out some stuff.  We can certainly share materials across tables.  We are going to do a little bit of a breakout so we can have some engagement across lines, so, you know, as you're sitting is probably great, but if anybody wants to get up and move seats based on locations or regions, if you know each other and know everybody at your table, please change it up, but we are going to talk a little bit about action planning and ingredients for successful public health campaign and give you guys kind of an opportunity to brainstorm some messaging and think through what would possibly work in your area in terms of development and execution.  So, the three ingredients, um, are planning, development, and evaluation.  We always have to be evaluating what we're doing, we need to put measures in place.  Um, the development is really the critical piece.  You can have all the ideas in the world, but if they're not executed fully or correctly, then it's a miss, and your evaluation will be not as strong.  Um, so, we are going to talk a little bit about, oh, you want that?  Um, there you go.  Um, about what we need, and, so, there are some worksheets that we'll go through in detail, but, definitely, a defined target audience, who are you trying to reach, how do you break through the clutter, and we know there are so many brands advertising to you daily, whether it is through digital, television, social, outdoor campaigns, etc., there are just so many messages that we're receiving per device, per day, um, how do we break through that, and who are we talking to specifically, what are those demographics, what are the characteristics/behaviors of those people, what is the messaging, how do we hit them right away, um, what is the strong call to action, once they receive our message, what are we asking them to do.  
What is the communication strategy, how do we get this word out, what's the plan for that, how often and frequent are we going to put those messages out there, is there a media plan component that needs to be involved.  There are certainly, um, display partners, for example, that are willing to give pro bono impressions, so an example would be, um, having a sponsored ad on Baby Center, for example, which we've done in the past and it clicks through to our website to learn more and to download a flier, so that's an opportunity.  We got those impressions, meaning eyeballs, pro bono.  There's also opportunity to simply, um, put fliers out there, if that is the most effective way based on dollars that you may have.  We've had, um, two states now do billboards based on dollars they've raised, so we've had CMV billboards on, you know, really populated mainstream highways within their states, pretty awesome to see that, and just other opportunities.  Utah has done a ton, um, in terms of cool PSA options, so an ad in one of the performing arts centers in the Hamilton brochure, a PSA in a movie theater, 30‑second video PSA before the movie started, um, they're on buses, they're on trays, they're on billboards, as we mentioned, so there's a lot of opportunity to be creative.  
We've gone so far, we have hand sanitizer, we've handed out toothbrushes to people, we've done awareness kits, where we've given 50 of our top parents who were interested our color ribbons with some stats and a flier, and they've decorated benches and trees and fences in public areas to bring attention to this as a start because of lack of resources.  You can't always do the digital media campaign, but that's a good first step, right?  And then, you know, funding is certainly critical, and you have to think about what's realistic, and you have to try and get partners involved and on schedule in terms of producing some of the stuff and then creating a timeline that makes sense, um, whether it's seasonality within your state, whether it's CMV awareness month, which is June, or whether it's tied to newborn screening or something different, you know, there are these appreciation days for a lot of things that actually affect our population, and so there may be some opportunity to build around those as well.  Here are just a couple examples of some really powerful public health campaigns.  Now, obviously, these require some serious esthetics to accomplish, but just a taste of something that's more shock, we were just having a side bar about Zika, and for a lot of the folks who were getting pregnant, talking about pregnancy, etc., what shocked them so much was thinking about this little mosquito and then identifying with a baby with microcephaly in South America, for example.  That was all over mainstream media, it was so, um, just hyperpromoted that it was a shock type of campaign, and with that, so much other media and blog posts, etc., picked up from some of that imagery, and, so, imagery is powerful, story‑telling is powerful.  
Um, how do we captivate and learn from the Zika campaign, for example, and some of these others to magnify CMV and get it out there?  So, this particular campaign is called one gene away, and the client, um, of this advertising agency was Cure SMA.  SMA is a very rare genetic disorder that affects children, so this was, um, pretty phenomenal in terms of just the photography used and the shadows, and I can hardly see what it says, but it talks about the potential for this one gene to cause this rare disorder.  So, um, so that is really powerful.  Um, the CDC worked on, um, this AIDS campaign not long ago, and they have different messaging that's talk testing, talk prep, and prep is an acronym, and join the conversation, and they have a series of ads that rolled out across this, and this is start talking, stop HIV, is their tag line.  So, um, you know, they put this campaign out there, again, coming from the CDC, public health agency, state Department of Health, it's extremely credible, it holds a ton of weight, and, you know, it's easily shareable, even if it's something digital, like this, that someone can take a screen‑grab or take a JPEG and share it with their phone, for example.  Um, some of the most basic ways, so just wanted to share, you know, again, powerful imagery, um, not a lot of words, but something that's really compelling, and a strong call to action.  So, what we want you guys to do, we, um, you know, I think what's good is that we can all think really small scale to start, what's a pilot look like, what is something that we can each leave the room thinking about, and how can we get a group together to kind of execute on something, whether or not we have resources in marketing, creative, media, etc., what can you do day to day.  Can you create a toothbrush and take plastic toothbrushes and hand them out to people with a flier that we've already created for you?  That's one option, but pilot a smaller‑scale initiative, don't develop it in a vacuum, there's always, you know, things to think through logistically, um, iterate, you know, if that message is not landing, what can you think of next to sort of build upon that.  
We are currently doing that at the foundation.  CMV is not landing, how can we talk about CMV?  We are constantly iterating on that messaging, and then presenting key elements to get feedback, so, you know, take a small sample scale, a sample audience of, um, your peers, your friends, you know, what is the feedback, where can you continue to improve upon some of that messaging and the communication strategies for that population.  How big should your pilot be?  What's reasonable?  And what should be piloted exactly?  So, um, with that, we're going to break into these little groups per table, and for the folks in the back, please fill in, and Erica's going to walk us through sort of what this first worksheet is and how we can kind of engage in some discussion.
>> SPEAKER:  Yeah, so, we just took a very simple template of how to outline, um, some strategies, what might work for your state or for some of your stakeholders, um, how you're going to extend that message to your target audience.  Um, so, first column is the marketing goals, which are your objectives, so how, what are the reasons, I guess, behind doing this and what's the foundation for getting this messaging out.  Um, and then strategies and how you're going to do it, so that is that, um, publicity, PR, marketing, you know, grassroots efforts, that kind of thing, and then responsibilities, who's willing, or who's going to do it.  So, you know, I find it best when I'm going through some of these projects, um, in my career life, to have, to kind of name the stakeholders that are involved and who's going to be project champion, what kind of partnerships you need to leverage, um, organizational support, having an org chart always helps, that kind of thing, so sort of outlining responsibilities that way, and then materials needed, so materials can be funding, it can be people, it can be, um, legislation, if you wanted it to be, you know, so parts of that are, um, things that can be outlined in that section as well.  So, we're kind of going to let you guys brainstorm together and think through some of, um, these steps and try to cultivate just a starting point for your audience.  Is there anything else?
>> SPEAKER:  Um, I think, ideally, if anybody comes up with something spectacular and wants to share, we'd love a little read‑out of what the group came up with, just so we can iterate on that.  So, let's take 10 minutes for the various groups to discuss on this, and then we'll share as a group and see if there's any sort of fantastic tag line or messaging component or target audience that we haven't considered that we can walk out of here and think through.  So, um, are there any questions before you get started?
>> SPEAKER:  Did everyone get one of these?  You need one?  Okay. 
>> SPEAKER:  All right, let's do it.  And we'll walk around and help. 
(Group exercise.) 
>> SPEAKER:  We're going to regroup in one minute, if you could just sort of wrap‑up that thought.  All right, everybody, just sort of wanted to regroup quickly, and there is certainly no rhyme or reason to this part of the discussion, just wanted to hear some of the talking points that went on at each table.  So, was there generally, um, discussion around challenges that exist in your areas?  And if so, did you guys identify any, you know, sort of next steps and how you're going to move past them?  Or is there some sort of creative discussion that came out of, like, messaging or promotion opportunity, you know, what is the action plan that you guys came up with from a strategic standpoint?  If anybody wants to share sort of what the discussion points were or next steps or challenges, you know, we're all ears, so let's make this a little bit lively and kind of iterate on it as we talk.  Any volunteers for first?
>> SPEAKER:  One of the things we discussed at our table was we can educate, we can educate, we can educate, but they go back to their OBGYN and get shut down or they're told it's not important or it's not really that big of a risk, so that is kind of a standing ground that we come, that's a block consistently, I think I've had that block for 15 years, um, even just sharing with my own personal friends, saying, oh, ask to be checked for CMV, ask to be tested, and their OBs are just kind of like, oh, yeah, it's not really that big of a deal.  So, that was part of our discussion here, was how do we get them more onboard, because we can educate our moms, and we want them to have knowledge as power to how to take care of yourself during your pregnancy, but, again, if you go back and you're getting shut down, that it's really not a big deal, so that was our block.
>> SPEAKER:  In line with that, we kind of came up with a little catch phrase for parents.  Um, don't be afraid to push, and the acronym stands for persist until screening happens, so we thought that you could do something, that was, you know, yeah, the magic is over here.  Don't be afraid to push, and then push stands for persist until screening happens.
>> SPEAKER:  That's great.  I think that's great.  I think we need to come up with really interesting ways to talk about it, have call to actions, as you said, so that someone says what am I talking about this for, what do I do next about it, what am I asking my doctor for, etc., so that's pretty cool.  Thank you for sharing that.  Any other thoughts or, um, the challenges around the OB, I think, is exactly right, it's a block.  I think we have to continue to facilitate that dialogue, so get them sort of bottoms‑up, but also, hopefully, with the RUSP nomination and other things, maybe there will be some sort of top‑down trickle effect that does, in fact, happen, once OBs see what the pediatric side is doing, but I do think approaching the sort of nurses and nurse practitioners and PAs and doulas	 and midwives is a really great sort of first step, and there's a whole network of them in each area, and I think we should tap into that and just do some educational sessions with them.  They can be really informal, they require next to no money, just simply time, it could be over coffee, and just try and educate them a little bit, and, again, they can download our fliers, if they're interested, so it wouldn't require much more, um, capacity in terms of developing things from their perspective, but it's a good start, but that audience absolutely has to be reached.  Other ideas or thoughts?
>> SPEAKER:  We had the idea of, um, sort of working around finding, getting access to OBs by starting with, um, parents who have other small children who are taking their kids to the pediatrician, because pediatricians are seeing pregnant moms all the time who have young kids, and asking them about do they know about CMV, here's some information, oh, here's a flier you can take to your OB to talk and ask these simple questions, so then you can talk more about what you were thinking about for Kentucky.
>> SPEAKER:  So, in Kentucky, our chapter champion works in my office, so we are, we have access to the AAP Kentucky list serve through our chapter champion, so we've done some EHDI promotional stuff, just, like, blurbs, saying, okay, will you forward this to the Kentucky AAP, and they'll send it out to all the pediatricians on e‑mail, so talking about, you know, sending some guidelines for how to address pregnant moms when they're in there, especially with children of daycare ages, um, more so than anything else, I think, but, you know, obviously, any pregnant mom, saying, hey, you know, if you see a pregnant mom with a young child, please talk to them about CMV prevention, give them this flier, um, give them the talking points even, and then send that out in an e‑mail blast to all our pediatricians, because we don't, we're not going to get anywhere with OBs, I mean, not right away anyway.
>> SPEAKER:  Couldn't agree more about the pediatricians.  They're the one managing care of all of these complex kids, so I think getting them onboard and asking them to do something, I think they want to do something, they don't know what to do, I love that idea.  Every state should have a chapter champion, so we can always access them through EHDI coordinators, and there are a lot here, obviously, at the EHDI national meeting, so let's figure out a way to engage those folks and leverage their expertise and their networks.
>> SPEAKER:  I'm just going to talk about one idea that we had at our table.  I feel like we had a lot of really good ones, but the one we talked about is how to reach pregnant women, and, um, I've been pregnant twice, and both times, I had apps on my phone, I had about five or six, and every single morning, I would check them religiously, you know, I'm 12 weeks 3 days, my baby is the size of a plum, and he or she is developing their ears or, you know, whatever, but somehow, if the CMV Foundation could partner with some of those platforms, or if the CMV Foundation could develop their own app and we could market it in a way to, um, reach these pregnant women, um, to not only include those specific milestones of the baby's development, but also just helpful tips along the way, you know, we all know not to drink alcohol while we're pregnant, we all know to heat up our turkey sandwich whenever we're having that for lunch, but we haven't heard not to kiss our babies on the mouth, and, so, um, to provide them that, um, information that they are eager to know about their baby's development, but also giving them helpful tips along the way about how to have a healthy baby.
>> SPEAKER:  So, another idea, um, from Wyoming that we can do, that we have control over, because we have a really good relationship with our child development centers in this state, um, and some daycare providers, um, shortly, we're going to do a survey to kind of, um, get a handle on the awareness level that's out there with those daycare providers, and then, um, shortly after that, because we have good access and good relationships with many of them, that we could, based on some of that feedback, um, do an awareness and education campaign, kind of address what's needed.  Okay, thank you.
>> SPEAKER:  Um, I think, yeah, I think for childcare providers too, um, you know, there are national accredited organizations that exist, and there are contact folks for those that we can reach out to, and we've started that.  We have a committee of folks who are former daycare providers who are working on that committee, along with a lot of pediatricians, and we are starting to develop some training modules and other things to educate these groups.  Now, the hard part is a lot are unregistered with the state, if they're private, and that's okay, right?  I mean, as long as you're educating the general public, perhaps they'll catch wind, but I think there's a huge opportunity there.  To speak to your thought about the app, I think that's tremendous.  Um, there is a lot of digital media and apps and even, you know, we were talking about Baby Center, newsletters and things that come out if you're enrolled, um, there's content there that we've pushed out, but, um, a lot of the in‑app stuff is cost prohibitive for us at the moment, but I think that's a huge opportunity, to look for some kind of donation or pro bono support from the vendor to see if we can get in there, so that's a partnership we should continue to explore, so I think it's a great idea, and that information is still very weak in terms of what's presented today through those apps or on What To Expect or other things, so I think we could really help them develop fresh content on it.  So, great thoughts.
>> SPEAKER:  We wanted to share one about targeting school‑age students with, um, healthy behaviors in general, maybe along the lines of mono, how to reduce your risk of getting these kinds of viruses throughout life, and, so, maybe it's something that could be added to health class curriculum throughout school‑age years.  Now, how we get that into the curriculum, we have to still figure that out, work with the Department of Ed somehow.  The other one we wanted to point out was this idea of, you said we want power to be in control of our pregnancy and child, and we're thinking, using that message with, um, home visiting programs, to get them talking with their parents, their moms or their future moms that they're working with.
>> SPEAKER:  I just wanted to add a quick thing on to that, and that is that, um, for those of you who, in your states, might be wanting to conduct, for example, an awareness study or some of the data that's presented, I just wanted to point out that, um, being aware of something and, like, knowing and being able to identify it from a list of conditions that can affect your baby does not equate understanding the behavior and precautions you need to take in order to prevent transmission to your baby, and, um, a study that was published last year show that there is a difference, it's a real measurable, quantifiable difference, that maybe it's the wrong metric we're focusing on.  Maybe we should be focusing on health risk knowledge.  So, if you target just good behaviors and tie that to CMV, um, that that might be a good place to kind of just get in, like, you know, you don't share forks, make sure you wash your hands.  So, just, I just wanted to plug, you know, if you guys are thinking about doing an awareness study, I could forward you a paper, a different kind of metric you might want to collect in addition to that, so you can see there might be a difference, and I think it's important to be, um, aware of that.  One final thing I want to say is maybe one of the, um, challenges, right, for CMV that I think we've all kind of talked about, probably in different points, is that, um, our vectors are really cute, right?  They're babies, and you can't just have a picture of a little baby like you can with the scary mosquito pictures, so it's a fine balance between, we were discussing, like, do you want to present, even though kids, like my son, who I love dearly, he's, like, the far end of the spectrum, and, um, you know, and probably, if I had seen a picture of a kid like him when I was pregnant, it would have scared me, you know, so do you show the most severe, even though it's not the most common presentation of CMV?  Or another idea was do you have a picture of two very typically‑looking babies and say one of these is at risk for blah, blah, blah, which baby is it?  Which is a scarier message?  I'm not sure.  Just, you know, kind of spit‑balling that.
>> SPEAKER:  I think that's a great idea.  I think what we often hear is we don't want to scare women, they're already scared enough, they can't handle this during pregnancy because they're hormonal, which we know is incorrect and outrageous on a lot of levels, but I do think that there is some opportunity to think about the imagery of that.  I love the idea of typical‑looking kids, because this virus doesn't discriminate, right, of course, and I think there is, um, a lot of confusion around transmission, because, um, we take positions on, you know, should a child with CMV be excluded from childcare or daycare or preschool, and the fact is, no, absolutely no, and that's because one in five children are actively shedding this virus at any given moment, and you don't know that, because, um, no one's being screened for that in the moment, you're presenting with just a cold or a flu as a child, because you are not born with congenital CMV, but it is such a highly contagious virus for the ages, you know, between zero and 5 typically, that on any given Tuesday, you know, there are a bunch of kids within the class that are probably actively shedding this through saliva, tears, or urine.  So, we do take positions on a lot of that stuff.  I love the idea of, um, of typical‑looking kids as an opportunity to exploit that as well.
>> SPEAKER:  So, the downside to just showing the success stories is that, I believe, sometimes, it undermines the urgency, and the little girl, Caitlin, she was gorgeous and very healthy‑looking and, um, she didn't necessarily give me a sense, if I was not familiar with the disease, she didn't give me a sense of urgency, because she didn't look any different than my son when he was her age.  So, I think, in my world, children with special healthcare needs, we tend to talk to the parents from a strength‑based perspective, but when there's time to act, we really need to act from the perspective of what the needs are, the gaps are, so we've got to figure out a way to show, I think the typical, two typical kids, that's a meaningful message, but it needs to be sort of like tobacco, the multi‑message, you know, at one moment, you see a person with a traik, the next moment, you see a guy who looks just fine who has lung cancer and he's 39 and terminal, so it can't just be one image.  Otherwise, you will lose either that sense of urgency from the, kids with the severe needs, or you will give the impression of, okay, um, if they look that way, then is it really a big deal?  It's just, I think it has to be a robust, multi‑facetted message.
>> SPEAKER:  That's really good.  Really important.  I think the urgency piece is critical, because this is extremely urgent.  Talking about, again, we don't have the right numbers, because we're not screening every baby, but the numbers we do have are pretty high, and when you're comparing against Down and then looking at Zika, which is fractional, it's really interesting, so how do we create that buzz, that sense of urgency, and cut through the clutter, when there's so much else going on.
>> SPEAKER:  I think a lot that happened with Zika was because we didn't know.  A lot of the preparation, I was apart of the preparation for the state as it relates to Zika, I think we feared that it would ultimately be substantially worse than it ultimately was, and the reason all of those efforts and funds came about was the worst case scenario fear, and I believe it was right on the back end of Ebola, which had the fear, so it's a different message, it is let's not fear what might happen, let's talk about what CMV actually is doing, but when you pit disorders against each other, sometimes, you sort of turn off the people who are already passionate about that other disorder.  I know our newborn screening team will often say my babies are so much worse than diabetes, and they have PKU and need special foods.  Well, there are a lot of people with diabetes, so if you turn the diabetes advocates, then they're not going to be there for you on the PKU front.
>> SPEAKER:  That's a great point, and because CMV babies, the more complex ones touch so many different things, a lot of parents generally identify with one or many of the various outcomes, so there's epilepsy groups, there's CP groups, there's hearing loss groups, right, so, sometimes, we lose our identity in all of that, and I think that there's opportunity to partner and to collaborate with those groups at an organizational level and at a parent level, and we can do more of that in terms of bringing the awareness and education through those groups to that parent population, so that's an opportunity as well, and that rang a bell, when you said that.  Anyone else that would like to share?  Okay, cool.  Um, all right.
>> SPEAKER:  So, um, one of the things that I learned doing legislation was, um, it was very helpful to get different organizations, um, to collaborate and be supportive of our bill.  Out of the woodwork came March of Dimes, so they started hearing the rumblings of what we were doing, and they got really behind it, because they are, um, a huge organization that promotes, obviously, um, wellness for babies and, um, to try to counteract premature birth and some of those things, and CMV has been known to be a cause of premature birth, as is with my daughter, so we actually had an Illinois chapter person from, um, March of Dimes come to the state capitol and talk about why they were supporting this and provide some, um, testimony for it, which was fantastic, and I think it resonated a lot with, um, the political powers there, because they knew March of Dimes, and they had, um, they have a weight to their organization that, um, they just collaborate on a lot of different things, so, um, if that is a possibility, partnering with organizations, not just March of Dimes, but you already have some connections there with some organizations, um, just based on your roles in the state, that might be another avenue to get their support and maybe talk to them about how they can get the word out just in their own channels.
(Off mic.)
>> SPEAKER:  Yeah.  Hold on.  Here.
>> SPEAKER:  Maine is going to laugh at me, because you know this, but, um, I just want to say that, um, as I said at the very beginning, so, CMV is in the top five of etiologies for kids who have deaf‑blindness, combined vision and hearing loss at any level, and your state deaf‑blind projects are trying to find these babies so that they can provide technical assistance, support to your local teams, to your schools, and, so, if you haven't connected as an EHDI person or as a state project with your state deaf‑blind project, that is a possible partner.  I can't speak for every state, but I can say that a lot of states are really focusing on finding these babies.
>> SPEAKER:  Awesome.  Great, guys.  Well, we'll wrap, because I know we're almost at time, and it's been a long, but really productive, from my perspective session.  So, um, we did touch on all of this, and we kind of spent some time on the strategic plan as well, but, um, in summary, just, you know, take‑aways for you guys in terms of how we feel about it is that, obviously, there's a lot of challenges associated with CMV, and we all have very unique ones and roadblocks that we've run into in our personal and professional experiences.  Um, we want, women want to feel empowered to make informed decisions about their baby's health, so education really is critical, and we are at a juncture now in which I think, um, education is powerful and something we have to get across to healthcare providers, etc., um, and that we want to be counseled at point of care, and mainly about prevention, you know, while you're going through it, but then also about some of this collaboration with the multidisciplinary teams and referrals and just more action, I think, from the medical community and the early interventionists and anybody working on your case, I just think there needs to be a lot more, um, knowledge‑sharing within the group, and we're here to help facilitate some of that, if we can.  Um, we need large‑scale federal funding, and we're going to continue to go after it, and if there's opportunities to get involved at the state level, please let us help you, we'd love to do that, and last, we need a vaccine to really, um, help eradicate this one day.
>> SPEAKER:  So, I'm just going to say we had such a, oh my gosh, I'm going to lose it.  Okay, we had a really hard week in the CMV community this past week.  We lost three babies.  I call them babies, but they were awesome kids.  So, Leah, she was affectionately known Bug, passed away just a week ago, February 23rd.  Um, she didn't wake up.  So, her mom put her down to sleep, and the next day, she was gone.  Sorry.  Then Sammy, she passed away two days later.  She had a little bit different departure.  They knew that, um, her time was coming to an end, so they prepared for that, but we were all kind of waiting with baited breath the whole time that she was saying her goodbyes, and it was, it just came at a bad time, two days after the sudden loss of Leah.  So, and then there was another little boy, and, unfortunately, we just didn't have a lot of information about him, his mom kind of backed away from the community, but his name is Chance, he passed away a little bit later in the week.  So, we're just dedicating this presentation to them.  I don't know if this, this talks about the urgency, right?  This is the other spectrum, which Kristen has lived through.  We want to prevent this from happening to our community, but we experience loss, and it's very real, it happens more often than we would like to admit, and we love these kiddos so, so much, um, but we, this is our driving effort, why we do this, this is the whole reason National CMV Foundation exists, because of Evelyn's legacy, and, you know, she was an amazing, beautiful soul, and this is the reason her mom's standing here.  So, um, you know, we have to keep that in mind, and this is why parents have just been brought together in this situation, but we are really grateful to all of you guys in the room for coming, for talking with us, for learning more about CMV, providing your feedback, your insights, your, um, your experience with your different roles in government and state and the different states, so thank you so much for coming, and I think with that ‑‑
>> SPEAKER:  Please, um, tomorrow, during the stakeholder meetings, you know, please bring this up as something to consider and talk about and put on the agenda for future meetings.  I think that would be tremendous, and we're at booth 25, if you want to talk further, so please come see us in the exhibit hall today, tomorrow, Tuesday, but we look forward to continuing the dialogue.  Thank you for your interest.  Enjoy the conference.
(Applause.) 

This is being provided in a rough-draft format. Communication Access Realtime Translation(CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.