2021-05-03 00:00:00 - Joint Committee on Public Health

2021-05-03 00:00:00 - Joint Committee on Public Health (Part 3 of 4)

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BECKY CRUZ-CROSSON - BPHC - HB 2312 - HB 2371 - SB 1470 - Good afternoon everyone. Good afternoon, Chairwoman Comerford Chairman Mahoney and committee members. I'm Becky Cruz-Crosson the director of healthy Start Systems at the Boston Public Health Commission. On behalf of the commission and Mayor Kim Janey I'm here in support of an act relative to conducting fetal and infant mortality reviews. There are three bills with that name before the committee. H 2312, sponsored by Representative Haddad, H 2371 sponsored by Representative Miranda and S 1470 for sponsored by Senator Lovely. In an average year in Massachusetts, nearly 300 infants die before their first birthday.

Fetal and infant mortality review is a public health process that allows local communities to prioritize health equity by identifying the causes behind unequal rates of fetal and infant death. The multipart FEMA process supplements the big picture. We get from state birth records with detailed information from individual record reviews by medical professionals and in home interviews with women and other child birthing people about their experiences prior to loss. Today, there are over 160 local FEMA programs in 27 states, DC, Puerto Rico and the Commonwealth of the Northern Mariana Islands. At the Boston Public Health Commission we center Health Equity in our mission, which is to protect, preserve and promote the health and well being of all Boston residents, particularly those most vulnerable.

I oversee Boston healthy Start Initiative, a 30 year old national initiative designed to reduce racial inequities and infant mortality rates and poor birth outcomes. Boston Healthy Start provides direct supports to self identified black pregnant and parenting women, Children and families through care coordination, connection to resources, health education and advocacy. I also direct Healthy Baby Healthy Child, which is a Boston-based program that expands services offered and serves mothers with children up to the age of five. This year in Boston, the Healthy Start initiatives served 393 Children, 264 pregnant 398 postpartum women. While Healthy191 Baby Healthy Child provided advocacy and nursing services to 883 Children, 481 pregnant And 475 postpartum women with the ongoing goal of eradicating infant mortality in Boston.

As of 2018, Massachusetts has an infant mortality rate of 4.2 deaths per 1000 live births, the lowest in the country. But the state's overall success in this area is not shared equally across communities. In Massachusetts, black infants are 2-3 times as likely to die before their first birthday. We need a fetal and infant mortality view because it's an action oriented community process that continually assesses monitors and works to improve service systems and community resources for women, infants and families. Research shows FEMA is an effective perinatal systems intervention. This legislation would formalize in standardized FEMA programs in Massachusetts by first authorizing local boards of health to establish their own FEMA.

The Massachusetts Department of Public258 Health would establish a process in criteria for local public health entities to request and receive timely information on infant and fetal death. Second, the bill would require timely data sharing from DPH to local boards of health. Each community served by a public health agency could choose to implement a FEMA process on its individual needs. We280 want to be clear that under the terms of this bill, no state funding would be required for the operation of local FEMAs. There are successful funding models from other jurisdictions that use local, private and public funds to support FEMA operations. A FEMA process includes the qualitative data at the voices of the women, birthing people and families who have experienced the loss of an infant.

FEMAs actively seek out through the mother's perspective on the problems Families face their knowledge, attitudes and beliefs about health. The mother would be contacted after the standard waiting period of three months to request an interview. Nationally, 50% of mothers agree to interviews. A FEMA will provide an epidemiological examination of factors and determinants of the disparities and infant327 mortality that goes beyond the data available in a medical chart. I want to, in closing. I just want to remember that every fetal loss and infant deaths are tragedies for families throughout our state. I respectfully ask that you report an act relative to conducting fetal and infant mortality review favorably out of committee. Thank you.
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JOHANNA LOLAX - CONCERNED CITIZEN - HB 2315 - Okay, thank you. Chair Decker Chair Comerford and Representative Hawkins. I'm very flattered for the invitation to testify today regarding H 2315 an act to protect little lungs. It's an honor to be here. My name is Johanna Lolax your constituent from Worcester Massachusetts. I'm an educator, researcher and a writer with more than 20 years of experience in nonprofit and healthcare management who was born and raised in Dorchester and in Hyde Park in Boston Massachusetts. In May of 2019 I graduated with high honors from the Master of Public Health Program at the George Washington University Milken Institute School of Public Health in Washington, DC. I presented my thesis on the subject of paid leave and455 infant mortality at the American Public Health Association 2019 annual meeting and expo in the fall of 2019.

Today I'm testifying again to urge your support of House 2315 an act to protect little lungs to save Children's lives. Ample medical evidence exists to show that exposing young children to second hand smoke in the enclosed space of a motor vehicle can trigger sudden infant death syndrome, also known as SIDS as well as asthma attacks and severe respiratory and ear infections. I know I'm the adult child of a smoker. My own medical history includes childhood as well as adult asthma. As506 a public health professional and a person exposed to secondhand smoke throughout my childhood and512 teenage years, I provide evidence and bare witness that prohibiting smoking in vehicles carrying young children is a public health necessity.

The US Surgeon general reported in 2010 that there is no safe level of secondhand smoke. Smoke free car laws are needed533 to protect children. The University of Michigan's national poll on children's health Found that 82% of US adults favor a ban on smoking in cars carrying children under the age of 13. This same poll551 found that 60% of current smokers support such a ban, with 84% of former smokers and 87% of never smokers in agreement on that point. The courts consistently have upheld that there is no fundamental or other constitutional right to smoke and that smoking does not fall within the fundamental right to privacy.

As of 2013, approximately 25% of US. States including Arkansas California, Hawaii Indiana Louisiana Maine, New Jersey, New York Oregon, Puerto Rico, Utah, Vermont and Virginia either have passed statewide smoke pre-car laws or have cities and counties which have done so. Since the majority of US states and US adults, including smokers, currently support laws banning smoking in vehicles carrying613 young children, adoption of an act to protect little lungs should be passed as a public health priority. My biography and my George Washington University public Health law, critical analysis of an act to protect little lungs respectfully are submitted and they're attached for your information. Thank you very much.
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BRYN AUSTIN - HARVARD STRIPED - HB 2331 - SB 1525 - Hello again. Good afternoon. Chairpersons Comerford and Decker. This is Bryn Austin now and I appreciate the opportunity to present today in support of House Bill 2331 and Senate Bill 1525. I'm Bryn Austin as I said professor of pediatrics at Harvard Medical School and Harvard Chan School of Public Health and I'm here today to share research supporting these bills and to urge you to vote in favor of this important legislation. The US Market712 for dietary supplements is enormous and steadily growing with projections to reach $57 billion in annual revenue by 2024. We've all seen these products that pharmacies, grocery stores and online. But what many722 people don't know is that dietary supplements725 are not pre screened for safety or efficacy by the FDA before they enter market.

Instead manufacturers are expected to ensure their product safety.736 However, for some types of supplements, especially those sold for weight loss and muscle building, these have been found repeatedly to fall far short of these expectations. Rigorous scientific study after study has shown these types of supplements to pose a serious health risk to consumers. Many have been found to be laced with prescription drugs, banned substances, steroids and other dangerous chemicals. Furthermore, studies have linked weight loss and muscle building supplements with stroke, testicular cancer, liver damage and even death. The CDC estimates that 23,000 Americans are sent to the emergency room every year due to supplements, and fully a quarter of those cases are due to the weight loss category alone.

In a recent study with the FDA's adverse Events database, my research team found that youth using weight loss or muscle building supplements were three times796 more likely than those using ordinary vitamins to experience severe medical harm, including hospitalization, disability and even death. Dietary supplements sold for weight loss805 and muscle building are not recommended by the American Academy of Pediatrics, which recently issued two reports strongly cautioning against teens using these products for any reason.

The fact that retailers across the Commonwealth sell these types of dangerous supplements to youth, some as young as 12 years old is unconscionable. How can we830 continue to let manufacturers and the retailers who profit from them play Russian roulette with the children of the commonwealth. This legislation offers a common sense solution to protect our children by prohibiting the sale of supplements for weight loss or muscle building to minors. Just as we've done with other risky products like tobacco I urge you to vote in support of House Bill 2331 and Senate Bill 1525. Thank860 you for your leadership on this important child health issue.
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KRISTINE MCMILLAN - HARVARD STRIPED - HB 2331 - SB 1525 - Good afternoon chairs Comerford and Decker and the members of the committee. Thank you for allowing me to speak today. I am in support of Massachusetts bill 2331 and Senate bill 1525 an act protecting children from harmful diet pills and bodybuilding supplements because I was trapped in an eating disorder for 21 years. Most teens do not have the judgment to understand the consequences of using these products. I didn't. In the culture we live in, equal success. I was willing go to any extreme and so will our kids today. My eating disorder started with restricting and using diet pills as a, They were easy to buy. No one knew I was using them and I and I thought they were harmless.

It was innocent. I soon became obsessed with weighing myself and felt triumphant every time I saw that number on the scale. Mhm I was a responsible, motivated teenager, so no one even seemed to notice it was my secret. Eventually I started fainting frequently and was hospitalized, not realizing what I was957 doing to my body. In college I continued to use diet pills and diet shakes often and I started to have abnormal EKGs, but969 I ignored them. I was invincible or so I thought. This continued until my senior year of college where I was sexually assaulted, and I needed some way to feel like I was in control and a way to distract myself.985 So I thought about numbers. How many calories did I burn every day? How many calories did I eat? What was the number on the scale? What were the size of my clothes?

I, 700 calories a day. I did not to lose weight or how many diet pills. At 92 pounds I was forced into my first treatment program for 32 days inpatient. I started to have chronic cardiac problems due to all of my behaviors. Years later, when my husband and I got pregnant, I miscarried and had multiple complications. My heart was not strong enough to carry a pregnancy1024 and we were advised against ever getting pregnant again. My eating disorder and behaviors robbed me of the experience to carry my own. We turned to adoption but there will always be a void in my heart, through the opportunity I lost and the child that I never got to hold.

To think that this would be enough to stop but it wasn't. I was having heart palpitations and racing heart mm from the green tea and caffeine and the diet pills on a daily basis. I was frequently fainting and often times my daughter found me unconscious on the floor. I was not living. I was here barely existing. Finally, I went through six months of treatment. Weeks away from husband and daughter in a residential program. It was there that I realized that if I did not, I would lose my life.

So I ask you to think of your children, your grandchildren and those that you love. Passing this bill would help stop teens going down the same path that I did. And it1102 is a step from preventing eating disorders. I do not want to see anyone miss out on the things that I did or the part of life that I did. And I know from my experiences it would be different if I had not used diet pills. So I try not to think of the what if because I cannot1126 change the past, but I can change the future. Okay so I ask for your support on this bill. Thank you.
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SEN COMERFORD - I'm mindful of time. So thank you both so much for this really important testimony. I agree with the chair that you are absolutely saving lives. I'm grateful to my colleagues for filing this very important bill. I have actually a really simple question. Do you think it's going to be enough to require IDs um? What if we just this is a reaction?1185 What if we mandated that these supplements would go behind the counter putting one more layer between the consumer and the product locked up You know so that requiring a key or something?

AUSTIN - Yeah I think this is Bryn Austin responding and I think that's an excellent suggestion. We had considered that before to have it be either behind the counter or in a locked case to get it out of the sight line of children walking up and down the rows of the stores. At the moment that's not a part of the bill. But we would from a from a public health perspective we would be in support of that as long as it was agreeable to the committee.

COMERFORD - Very good. Um And absolutely we would be in conversation. The chairs would be in conversation with the filers of course. But you would imagine that that that could make even more of a meaningful difference in your own estimation.

AUSTIN - Yes. Having these products lies rows and rows of shelves in the local stores tells children that they should be using these products that these are normal, that they're healthy, that the store endorses them. We don't want that message out there because it's false. And locking them up or putting them behind the counter would be another way to keep that message from going to children.
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ROBERT RODOPHELE - FERRITER SCOBBO & RODOPHELE - HB 2331 - SB 1525 - Good afternoon Madam Chairs and members. I am Robert Rodophele with the firm of Ferriter Scobbo & Rodophele here on behalf of the Council for Responsible Nutrition in respectful opposition to House 2331 and Senate 1525. By way of a brief background, CRN is the leading trade association representing dietary supplements and functional food manufacturers and ingredient suppliers. CRN companies produce a large portion of the dietary supplements marketed in the United States and globally. CRN has pre filed written testimony as well with the, with the committee. The following is1340 a statement from the Council for Responsible Nutrition.

First to be clear, while there may be unfortunately bad actors to report to sell dietary supplements for weight loss who have deceptively and indeed illegally tainted these products without approved pharmaceutical ingredients, inclusion of such ingredients no longer makes the product a dietary supplement by definition1367 rather it is an illegal product that should never been sold and marketed in the first place.1372 The FDA1373 has and continues to work to take these products off the shelf. CRN supports the FDA in further cracking down on these actors to ensure that these tainted products never make it into the hands of a minor or anyone else for that matter.

Second, there are responsible law abiding companies who sell legitimate dietary supplements which when used properly when following recommended dosage are safe and effective. CRN believes these companies should be able to continue to sell these products responsibly and in accordance with existing law.1405 A product uh and or ingredient sale restriction is one of the harshest forms of product regulation and should therefore be affirmatively supported by evidence. In this case, the evidence should show a correlation between these products and eating disorders or dysmorphic disorder. CRN would urge the committee carefully review those studies and testimony, which may be considered and reviewed by the committee during its deliberations on these bills to determine whether such correlation is evident.

Third, the effect of the age restriction requirements on potentially hundreds of individual products will lead retailers to determine whether the sale of and potential liability of inadvertently or unknowingly selling these products is viable. The result would be limited consumer access1448 to all such products. In addition, there appears to be an ongoing open ended authority conferred upon the Department of Public Health to police more substances on the prohibited list of age restricted items, which would place a further ongoing burden on retailers in their efforts to comply. CRN is committed to working with the committee on a path forward to assist in these efforts combat serious public health problem of eating disorders and body dysmorphia among our youth. Thank you. I Might also add, I believe that the Retailers Association of Massachusetts has filed written testimony in opposition as well. Thank you and thank you committee members for your time.

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KATELYN FERREIRA - CONCERNED CITIZEN - HB 2331 - SB 1525 - Thank you very much. Good afternoon, honorable members of the Joint Committee on Public Health. My name is Caitlin Ferreira. I was born and raised in Massachusetts and I'm a graduate of the Harvard T.H. Chan School of Public Health. I'm a public health professional and I'm in long term recovery from an eating disorder. I'm here today to urge you to support House Bill 2331 and Senate Bill 1525 an act protecting Children from harmful diet pills and muscle building supplements. Diet pills and muscle building supplements are readily available for purchase on the shelves of our pharmacies in big box stores and online. However, as a result of the 1994 Dietary Supplement Health and Education Act or DSHEA the FDA. The FDA's power to regulate these supplements is limited and the FDA does not pre screen dietary supplements before they enter the market.
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FERREIRA - Um recalls are only issued after problems occur. Current regulations contrary to what CRN Just testified are not effective. Their reactionary rather than preventative. Furthermore, there's no evidence that many of these products work. Dietary supplements for weight loss and muscle building have been found to contain dangerous ingredients including stimulants and steroids. Many young lives have experienced health problems including liver failure and many lives have been lost following use of products like these. As Dr. Austin said, the American Academy of Pediatrics has expressed grave concerns about the use of dietary supplements for weight loss and muscle building by minors. Nevertheless, the use of these products remains widespread among youth.

11% of adolescents in a national survey reported using dietary supplements for weight loss alone. We can see the health consequences of these products in our communities, in our high schools and in our hospitals. Diet pills and muscle building supplements pose a particular threat for people living with eating disorders like anorexia and bulimia. This is very troubling as these groups already face a number of physical and psychological health risks. I speak as one of the hundreds of thousands of Massachusetts residents who has suffered from an eating disorder. As a young teenager I like many other people with anorexia engaged in behaviors that continue to impact my health and wellbeing. I used over the counter whatever products I could get my hands on to facilitate weight loss.

For me, this included meal replacement products and laxatives. Many others turn to weight loss supplements. Throughout the decade and a half in which I've been in recovery I've watched countless of my friends turned to these supplements, an effort to fit bodily ideals. Many of these people had no idea that these products were not pre screened by the FDA and have the potential to cause grave physical harm. After all, they're on the shelf next to our vitamins in the aisles of our neighborhood pharmacies available for purchase by any 12 year old desperate to achieve the physique on the1707 box.

Massachusetts residents need your help to keep these products out of kids hands. By placing an age restriction on the purchase of diet pills and muscle building supplements House Bill 2311 Senate Bill 1525 would help protect the commonwealth's youth from the harmful consequences of many of these products as both a public health professional and a person in long term recovery from an eating disorder. I strongly urge you to vote1730 in favor of this important legislation. Thank you for your time and leadership.
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KYLE TURK - NPA - HB 2331 - SB 1525 - I'm Kyle Turk. I'm with the Natural Products Association. The oldest and largest trade association representing more than 750 members nationwide. We're led by Dr. Daniel Fabricant, who at one time was the top enforcement official at the FDA's division of dietary supplements during the Obama Administration. During his time at the FDA. It is widely considered the most productive enforcement periods in FDA's modern history. We and our members, many of which you've heard from, strongly opposed 2331 and 1525. NPA and our members invest significant resources to ensure that their products are safe. These include good manufacturing practices, product testing and adhering to marketing guidelines while following the strict rules and regulations, the FDA and FTC have made for 25 years.

Those rules ensure that the United States enjoys the safest dietary supplements supply in the world. And as written these bills would prohibit ingredients from being sold to minors under the age of 18, including thermagens and lipotropics. That would mean school lunches, chicken, steak and other common food products suddenly become contraband. And in our view, it is simply ridiculous1816 to put building blocks of nutrition in the same category as alcohol and tobacco. And in 2019, we submitted a FOIA request to the FADA to explore whether there were any adverse events from cases involving eating disorders and supplements. And the answer from the FADA was zero.

If these bills were to become law, many products like vitamin D and calcium would not be made available to people under 18 and this would have a catastrophic effect on vulnerable communities using these essential products to supplement their health and get critical nutrients they need. And under this bill, the fine for selling nutritional supplements would be 4-5 times higher than the fine selling alcohol or tobacco to a1855 minor. And lastly, the bill would have the Massachusetts Department of Public Health in consultation with the FDA determine which supplements would be subject to the law. However, due to federal preemption,1867 Massachusetts can't require that. And we support efforts to stop illegal drugs masquerading as natural products being sold to consumers and especially to minors. We support vigorous enforcement of the law to protect consumers. Still, this legislation will not accomplish that and will work against the existing law that is well designed to protect the more in three and four Americans who use a nutritional supplement. Thank you.
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COMERFORD - Mr. Turk I got a little confused in the middle of your testimony when you started to talk about school lunches and school lunches potentially being band because of their connection with, could you help us understand that a bit better?

TURK - Yeah absolutely. So for example thermagens, lipotropics and other ingredients that are found in um not just dietary supplements but common food1921 products you know are going to be uh considered contraband at this point the way the bill is written.

COMERFORD - What food products are these chemicals found in?

TURK - They're naturally occurring in chicken, steak, fish um and other ingredients.

COMERFORD - Okay I got but we're talking about the shelves of pharmacies right. We're talking about these chemicals packaged up into dietary supplements not a chicken dinner in the lunch line, correct?

TURK - Yes but the way the bill is written muscle building products, um You know, protein builds muscle, vitamin D builds muscle. Um This is a slippery slope conundrum.

COMERFORD - Okay, I think you're pretty far Um in your analysis. Thank you, madam. Chair, I'll turn it back over to you.

DECKER - Chair Senator Comerford. Thank you. I think it's a slippery slope when we start thinking that we're equating pills too, proteins that are found in meats so and if the bill needs to be rewritten to make that explicit, which I'm not sure it actually does. I think we could work on that.
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LORI PANTHER - MODERNA - HB 2338 - SB 1471 - Good afternoon everyone and thank you to Chairwoman Comerford Chairwoman Decker and members of the committee for allowing me to testify today. My name is Lori Panther. I'm a physician, a specialist in infectious diseases and a vice president of clinical development in infectious diseases at Moderna. I'm here today to speak in support of H 2338 and S 1471 an act relative to newborn screenings for congenital cytomegalovirus. Cytomegalovirus or CMV is a virus that is transmitted mainly by person to2096 person contact. Infection with this virus is generally pretty common in most parts of2105 the world and I'll estimate that about two thirds of us of all of us attending this hearing today have been infected with CMV.

Now the overwhelming majority of us never knew we had that CMV infection. We didn't2117 feel sick at the time and it will never become a health issue for us. So why should CMV testing for CMV be so important? Well, it's all in the timing of when that CMV infection occurs. Um CMV infection has its most devastating effects in our most vulnerable of populations our children. If a mom has an active CMV infection during her pregnancy, the virus can be transmitted to her developing infant at that crucial period when that infant's brain vision and hearing are developing. This is called congenital CMV infection and the consequences can sometimes be devastating. CMV is the most common congenital infection worldwide and approximately 40,000 infants are born with congenital CMV infection each year In the United States.

About one out of 10 newborns with congenital CMV infection will be severely ill at birth. Born with a clinical picture that can include brain abnormalities, seizures, deafness, blindness and jaundice. Some of these newborns won't even survive to see their first birthday. About 40-60% of these kids will struggle with physical and developmental disabilities for their entire lives. Now it is true that most newborns with congenital CMV infection will appear healthy when they are born. However, an estimated 10 to 15% of these kids will be diagnosed with a CMV related illness in their first months of life. Most commonly deafness or progressive hearing loss. In fact, it's estimated that2203 about one quarter of hearing impaired kids are hearing impaired due to congenital CMV infection.

So what is the issue is this. a test for CMV infection that is commonly used in other areas of medical practice is not consistently utilized in the newborn population. Now, most infants who are clearly ill at birth will eventually be tested for CMV infection as part of their clinical work up, but some of them won't. And virtually none of the can congenitally infected infants who appear healthy at birth are tested. So the 10 to 15% of these kids are at risk for a delayed diagnosis of CMV related illness. And a delay in diagnosis,2240 especially in the first months to years of life is a lost opportunity to begin early intervention measures that could put these kids back on track to achieving their developmental milestones alongside their peers.

It is also true that we at Moderna are working on a way to prevent the CMV infection through a CMV vaccine development program. Given the information you've heard over the last few minutes it's easy to imagine how a safe and effective CMV vaccine could improve the health of our kids. But currently there is no approved vaccine for the prevention of CMV infection. By making routine newborn screening a standard of care in the commonwealth we will ensure that Massachusetts families have the opportunity to screen their newborns for congenital CMV infection. Widespread routine screening will allow all families to become informed of congenital CMV diagnosis and undertake early interventions to perhaps improve the health outcomes of these kids. Um And we are committed to championing the expansion of newborn screening policies such as this legislation to reduce the2297 impact of congenital CMV infection in our children, their families and their healthcare and the healthcare system. Thank you for allowing me to speak today and thank you to the committee for your consideration.
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COMERFORD - Miss Panther you noted that sometimes uh infants screen for cytomegalovirus, sometimes they're not. Can you characterize2324 why sometimes they are and sometimes they are not. Is it a question of insurance? Is it a question of hospital policy? What's at the root of that in your estimation?

PANTHER - Right. It's um it's usually a question of of hospital policy. Um There is no um you know, there is no universal recommendation by um you know any pediatric entity to screen all2352 newborns for CMV infection.2354 And so the newborns that come to light are the ones who are born ill. Uh And that and so that you know the medical work up begins and2366 that's when the CMV testing happens. Um But you know uh sometimes that it doesn't even happen at that point. Um So the very ill children usually will have a CMV test as a part of their medical2380 care. Um But the children who are appear fine, you know,2383 in the delivery room, um there's no policy, there's no uh there's no guidance to test all children or all newborns for CMV infection at the time of birth or within a, you know three weeks of, also an acceptable time period.
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DANIELLE KINKEL - NATIONAL CMV FOUNDATION - HB 2338 - SB 1471 - Hi, good afternoon and thanks to all the joint committee members. Um My name is Danielle Kinkel and I serve on the board of directors of the National CMV Foundation. We're a nonprofit whose mission is to prevent pregnancy loss, childhood death and disability due to congenital CMV. So almost 10 years ago I received a really exciting phone call from my best friend,2444 Christmas Kristen that she was pregnant. Unfortunately the heartbreaks began for all of us early on as each appointment brought more questions and concerns, but no answers or diagnoses. My pip squeak of a god daughter Evelyn Grace was born five weeks early at 3 pound 14 ounces with microcephaly profound hearing loss on both sides and vision impairment.

In the coming weeks. Kristen her husband John and I all learned for the first time what CMV meant and the devastation it can bring to babies and their families. Because of Evelyn, I was able to become my own advocate when my husband and I decided to start a family. As a lawyer, advocacy is a bit second nature for me. But what I need you to know is how difficult it is2491 to stand up for yourself when you are newly pregnant. You are exceptionally nervous, anxious and deeply responsible for the life growing inside of you. I wanted nothing more than to rely on the advice of my physicians and providers here in Massachusetts, all of whom were excellent in so many respects. However, I2508 also knew that I was particularly at risk2510 of contracting CMV since I was in close contact with CMV kids.

I had never contracted CMV before and I had a young child at home. At every turn I was the one informing my obstetricians and midwives about the prevalence of CMV, asking to be screened2526 for CMV, calling the pediatricians to test my newborn sons for CMV and explaining why it was important. Each step of the way I was second guessing myself because none of my providers had ever seen a case of CMV and they were all curious why I was so concerned. On one particular occasion, I had to explain to my physician that she had read my test results incorrectly that a negative IGG result was not a good thing for a pregnant woman. Rather it meant I was at risk of a primary CMV infection while pregnant and that my husband and I would need to be extra vigilant with my preschooler at home.

And that's my experience that of an educated woman with access to world class medical care who is comfortable using her voice and who knows a fair2571 share about CMV already. So what's the experience of everybody else2574 out there? To date the work of raising CMV awareness has fallen squarely on the shoulders of CMV parents who are struggling to meet the needs of their CMV kids. Not to mention the demands of regular life.2587 It is time for physicians and governments to stand shoulder to shoulder with these families. The earlier we know about a CMV infection the earlier we can offer treatment and the earlier parents can understand what is ahead for them and to create a plan providing them with much needed agency in a moment of great uncertainty. If we've learned anything from this pandemic, it's that prevention and testing, particularly when there are no treatments or vaccines available makes a world of difference. Uh huh. Excuse me, tragically, Evelyn died on Christmas Day just shy of her second birthday. I do this work in her honor and I ask you to do the same. Thank you all for the time.
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VANESSA COLLERAN - MASSACHUSETTS CCMV COALITION - SB 1471 - HB 2338 - Thank you Chairwoman Comerford, Chairwoman Decker and members of the Public Health Committee for the opportunity to testify today in support of S 1471 H 2338. My name is Vanessa Colleran and I am a member of the Massachusetts cCMV Coalition. This is the story of2701 my second son Logan who was born with congenital CMV. I found out something was severely wrong with my baby when I was 25 weeks pregnant. Ultrasounds detected several abnormalities, including enlarged ventricles in his brain and extreme growth restriction. At 27 weeks pregnant, I was admitted to the hospital for a C-Section due to his deteriorating vital signs.

Logan was born on June 24th 2017, weighing only one lb 2oz. Five days later, he tested positive for congenital CMV. Though Logan had been given a 10-25% chance of survival. He was a fighter over the next four months, Logan overcame many obstacles, including moving from an isolate to a crib lowering his oxygen support and learning how to breastfeed. After over 100 days and countless hours spent at the2756 NICU, we were finally getting ready to take them home. Unfortunately, Logan became resistant to his antiviral medication and the virus quickly infected his lungs and brain. An MRI revealed severe and irreversible brain damage. Logan had been re intubated, sedated, had a feeding tube2775 placed and was looking at a very poor quality of life.

We no longer felt it was fair to make Logan continue his fight and decided to change his care to comfort measures only. On October 25 2017, he died2790 in my husband's arms with me by his side. He was just four months old. Every time I share my story, people cannot believe that they have never heard about a virus so common. After losing Logan, I learned a lot about congenital CMV, including that I was at an increased risk because I had a young child. It was hard to learn that there are simple steps I could have taken to prevent an infection while pregnant such as kissing my toddler2818 on the forehead instead of on the lips and not sharing food or utensils with him. Things all moms do. Women are educated about the prevention of much less common conditions such as Zika and fetal alcohol syndrome. Women deserve to know that's CMV exists and to be educated on how to protect themselves and their babies from it. If passed, our bill would make this a reality in Massachusetts and save countless families and children from the suffering we've had to endure. Thank you for your time.
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SHAYNE GAFFNEY - MASSACHUSETTS CCMV COALITION - HB 2338 - SB 1471 - Hi there. Thank you. Good afternoon everybody. My name is Shayne Gaffney. My daughter Grace was born severely affected by CMV after a seemingly normal pregnancy, which my wife will speak on next. She was born with significant brain damage, profound deafness, cerebral palsy2877 and vision issues just to name a few. I could go on and on and on. Um, CMV has slipped my family's world really on its head. We have constant therapy appointments. We had over 290 therapy points just last year alone. Doctors visits have been numbers in the 80 to 90 per year and she has, she's actually had to have surgery as well as a result of CMV including G tube cochlear implants and she needs surgery for her eyes to fix them.

Fortunately, though, Grace is a fighter and she's the reason why before you today. So one of the phrases that really got me through this is if you want to go fast, go alone, but if you want2920 to go far, go together. So aside from the overwhelming feeling of sorrow that I experienced when Grace was born after learning about her diagnosis, the most prominent was really a2930 feeling of urgency. So urgency to prevent other babies from being born with CMV, urgency to avert more heartbreak and really more loss for the families as Vanessa alluded to and urgency really to spread awareness for this virus. I'm very proud to say I went from an idea to propose legislation to speaking now in front of the well respected committee and less than one year believe or not.

Um however, I have really gone as fast and frankly as far as I can go alone. So I'm here asking you to join me today the Massachusetts CCMV coalition are the stakeholders, you'll hear from today supporting the bill. And I think together we can make history by being the first state to mandate universal newborn screening for CMV. Together we can set a2981 precedent for the rest of the United States to follow.2986 Together we can in fact save more babies and I think together, we can go far. I thank you for your time today.
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MEGAN GAFFNEY - MASSACHUSETTS CCMV COALITION - SB 1471 - HB 2338 - Chairwoman Comerford and Chairwoman Decker it's an honor3006 to speak with you today and share my support for this Universal CMV screening bill. My family CMV's journey has been in a physical and emotional rollercoaster ride filled with depression, self blame, hopelessness, optimism and a renewed sense of compassion and never ending love. I am the mother of a sweet girl named Grace, who was born with CMV at 36 weeks. And has faced, continue to face incredible life challenges them. Excuse me. You may or may not be mothers, but I kindly ask you to3042 picture this scenario for just one moment. You have a completely normal pregnancy. You take prenatal, you eat your veggies, you take care of your body and your growing baby. Your doctor tells you everything you think you need to know. They do routine checkups and things are great. You put all of your faith and trust in this person who is there to protect and educate you3072 on your pregnancy journey.

But your baby comes early. And she is anything but what you were expecting. You hear, it's a virus called CMV something very common yet you were never told about it. You learned for seven months her brain and body were silently deteriorating inside your belly as a result. You begin to hear phrases like we'll never walk, will never talk extensive brain damage. Microcephaly profound deafness, severe impact to her intelligence. She goes through multiple transfusions. You see her little tiny bruised arms, You can only hold her for 10 minutes a day due to the photo3112 therapy treatment she needs. You walk past other happy couples with flowers and visitors celebrating their new babies, only to collapse in your hospital room from3120 pure fear, confusion and a resounding. How is this happening?

But this isn't a hypothetical situation. This is our story and the most difficult thing to swallow about this journey is that these challenges could have been prevented if my doctor told me about CMV. The months after delivery were dark and there were little answers. The knowledge gap of this highly common virus is simply unacceptable. Please consider supporting this bill so we can give countless unborn CMV babies and they're beautiful big families an opportunity to live and grow. If we won't, moms will continue to not be educated and those CMV babies will continue to be born. Those born asymptomatic are at greatest risk. Many of them will leave the hospital happy and healthy only to become deaf a year later. And without universal screening, we risk not giving those babies the greatest chance of life. Why take that risk of not taking action? Please consider mandated universal screening and education. I appreciate you all listening and all that you do for the commonwealth. Thank you for your time and your leadership.
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AMANDA KEENAN - MASSACHUSETTS CCMV COALITION - SB 1471 - HB 2338 - Thank you. Chairwoman Comerford Chairwoman Decker and the members of the Public Health Committee for the opportunity testify today3212 In support of S 1471 H 2338. My name is Amanda Keenan and my second son passed away on April 11th 2020, shortly after birth due to CMV virus. I'm sorry. Um his name was Holden James Keenan and now I'm going to share his story and I actually have a picture of him as well. Okay, During the month of January 2020, I went to my anatomy scan3242 at 18 weeks pregnant. My Doctor told me she saw some fluid on my baby's abdomen. So she sent me to maternal fetal medicine. During that scan they told me that my son had severe ascites and may not make it as a lot of the fluid was pressing up against his chest.

I was scared and I was in shock as this was my second IVF baby and I had several blood tests previously performed and everything had came back normal. I had amniocentesis performed and a blood test for viruses. The doctor called me less than a week later and told me that the amniocentesis and blood work came back positive for CMV. At that time I had asked for a second opinion and I went to Brigham Women's Hospital to see the head maternal fetal medicine doctor and also Boston Children's Hospital infectious disease doctor. I had a procedure to remove the fluid from my son's abdomen to release pressure off of the chest, which removed 200 ccs of fluid. The following week I started antiviral medication.

My son was given3298 a 5% chance to survive so I knew I would do whatever it could as his mother to save him. At 30 weeks, four days they performed another procedure to remove fluid from his abdomen which resulted in 1.5 liters. Immediately after I had my C-Section. My son only survived two hours. I personally lost over 3.5 liters of blood, had a blood and iron transfusion was3317 only able to kiss my son goodbye as my husband left the operating room with my son Holden. He shortly passed away in his arms. I never got to hold my son alive. Per the autopsy my placenta was infected with CMV cells as well as my son's kidney, liver and spleen. My son was also born and passed away in my 5th wedding anniversary. It would be a day that I will never forget.

During this year or in the past year I began to learn a lot about CMV. However, I wish I knew what this was prior to being pregnant. When I told my family and friends what Holden3353 had most had never even heard of CMV even those who have children. If I had been more educated about CMV prior to my pregnancy then maybe I could have been more cautious of preventing it. Like picking up my toddler son from daycare, being safer at work as I work in a public area. I always think how come we are educated and can get tested on other viruses and chromosomal disorders but not CMV. If our bill is passed in Massachusetts, then no parent will have to go through the heartache and burden that we have. Thank you for your time.
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ANDREW WILLMENT - MASSACHUSETTS CCMV COALITION - HB 2338 - SB 1471 - Hi everyone this is Andrew Willment. Uh I'm married to Kim. Uh we were splitting time today depending on when things happened. So um I have the same testimony but basically. Um thank you to the chair woman Comerford and chairwoman Decker for giving us the opportunity to testify today. Um Like I said my name is Andrew Willment and I'm a parent of a child that was born with congenital CMV as well. She's three3430 years old now born early by emergency C- Section because she was no longer growing. Um when she was born she appeared normal on exam. Um But she was very small for gestational age. And because of that the hospital where you were um did CMV screening on her.

Um She had also failed the newborn screening uh hearing screening but there was speculation that was related to fluid in her ears. Um And she was doing well and her CMV came, she was planning to go home that day and her CMV test came back positive the morning where we were about to leave. Because of that universal screening we were not discharged that day and she underwent comprehensive audio logic and awful uh, exams. She had a brain ultrasound and MRI that day we immediately saw audiology and infectious disease. And we started her on um the antivirals to limit the impact of CMV on her body.

Um Nora is now three years old. She's deaf got3492 cochlear implants about as early as we could because of the hospital had the CMV screening. The impact of the virus on her was limited. Um sorry, it uh sorry, I3506 feel really blessed hearing those stories for how well for how well Nora is doing. Nora has had access to sign language and proper teachers of the deaf from about age of six weeks. And she's had aged appropriate language in ASL and spoken English. At her last evaluation. We are as a family have also been able to properly access the3537 resources to support her and we have been able to learn along with her. Because of that screening and early intervention Nora is a happy and healthy three year old and likely when she enters kindergarten, she'll be in a mainstream classroom. We consider ourselves extremely lucky that he CMV did not affect her other parts of her body. And that early treatment we received because we were at a hospital that screened is excellent at best. Thank you again.
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