2021-05-03 00:00:00 - Joint Committee on Public Health
2021-05-03 00:00:00 - Joint Committee on Public Health
(Part 4 of 4)
SHOW NON-ESSENTIAL DIALOGUE
at
this time I'm going to call12 forward a panel of clinicians.
I have dr laura Gibson from U. Mass. Medical Doctor Michael Cohen Dr Cheryl Glovsky, dr Barbara Morris. Um And let's see I have Tracy, Evans louis celie Antalya mango. And if you each want to identify your who you're representing, I have some of your hospitals and some of them I don't. So um thank you for being here. We can start with Dr Gibson.
LAURA GIBSON - MASSACHUSETTS CONGENITAL CMV COALITION - HB 2338 - SB 1471 - Hi everyone and thank you Chairwoman Commerford and Chairwoman Decker for the opportunity to speak to you. You'll see most of my testimony in the written document that I submitted. So I just want to highlight a few of the points you've heard and clarify if necessary. So I'm an adult and pediatric infectious disease position and CMV researcher at UMass Medical School. And for the last More than 15 years I've cared for a numerous innumerable children with congenital CMV. And their families in Central Mass. Um as you've heard um these parents describe invariably every parent that the baby's I've taken care of have asked why didn't anyone tell me about CMV if I had only known about this infection.
So um the need for prenatal education is critically important in this bill. I also want to highlight a few things about the benefits of universal CMV screening because just to make sure that they're clear, the first is that there's only a short window of time in which congenital CMV can be diagnosed and that's within the first three weeks of age. After that point, it's not clear whether CMV was acquired before birth or after birth. So um performing the test is critical within the first three weeks of life. The second point is that um any infant with congenital CMV requires further evaluation to determine the severity of disease and therefore whether therapy is indicated.
As as I think you also heard children who are sick at birth, their physicians. The standard of care is often to evaluate them for a number of possible causes, including congenital infection. But the vast majority of infants with congenital CMV appear normal at birth. So they will they, unless they're diagnosed, they would not undergo the critical evaluation including head ultrasound, blood work, audiology evaluation that is required to determine, as I said, the severity of disease and indication for therapy. Um The third point is that directed interventions cannot be provided without documentation of CMV infection and disease severity. So it treatment with the antiviral medication at this point in time is based on disease severity.
But even for channels infants who appear normal at birth and their evaluation is normal. In therapy is not indicated. It's absolutely critical for them to be entered into a monitoring protocol where there hearing and neuro development is watched very closely because we know that even those imprints that appear normal at birth can develop neurological equality of this infection. So um I want to emphasize that without universal screening of all newborns, there is no way to identify, evaluate and provide care to all children with Congenital CMV and if you look at the 2017 birth report in the Commonwealth and the incidence of congenital CMV. That means Approximately 495 infected infants are born in the commonwealth every299 year. So without universal screening we don't know who they are. Thank you for your attention, SHOW NON-ESSENTIAL DIALOGUE
Thank you for your testimony and for your work at this time. Dr Michael
MICHAEL COHEN - MASSACHUSETTS CONGENITAL CMV COALITION - HB 2338 - SB 1471 - Thank you. Chairwoman Decker, Chairwoman Commerford and members of the public Health Committee for the opportunity to testify today. The support of this bill. My name is Michael Cohen and I'm the director of the pediatric hearing loss clinic at Massachusetts Pioneer. And as a pediatric otolaryngologist caring for children with hearing loss, One of the most difficult things I have to341 do is to share with the family that their child's hearing loss is due to an infection that could potentially have been treated. If only we had diagnosed the disease earlier or even prevented349 entirely of simple precautions had been taken and sadly.
As you've heard352 today, this is too often the case with Congenital CMV CCMVis common, preventable, detectable and treatable. One and 200 babies is born with CCMV in the US. 15% of these children will have symptoms at birth and maybe diagnosed if their birth hospital has targeted testing. The remaining 85% are asymptomatic initially. However, 10-15% of these children will eventually develop symptoms including hearing loss and cognitive delay, infants diagnosed early can be treated with medication which can improve developmental outcomes. But untested children may develop symptoms as toddlers are at school age, which is far too late for effective antiviral treatment, and some children will never be tested at all.
A recent survey of birth hospitals in Massachusetts found that fewer than 50% of responding hospitals have a specific protocol for CCMV testing in newborns. Even when risk factors such as a failed newborn hearing screening are present, we cannot treat what we don't know is there. As you've heard, most expecting mothers have never heard of CCMV let alone the fact that a common cause of maternal infections transmission from toddlers who are shedding the virus. Simple measures such as kissing your children on the cheek or forehead rather than the lips and washing your hands after changing. Wet diaper can prevent this virus from being transmitted to an unborn child. We educate mothers on the risk of deli meats and kitty litter.
Why not CCMV? One might ask why we should implement universal screening for CCMV when it's when it is432 not on the recommended uniform screening panel or rust, that's put forth by the Department of Health and Human Services. This panel is a list of disorders that HHS recommends for states to include in their newborn screening programs and while the rest is important, it's a guideline and not446 a mandate. According to HHS, not all states screen for every disorder on the rust and some states screen for additional disorders. The process to add CCMVto the455 rust has been initiated, but the data exists to act now. In 1998, universal newborn hearing screening became the law in Massachusetts.
This is one of the first such statutes in the nation and as a direct result of this law and others inspired by it, the average age of diagnosis of hearing loss in children has gone from 2 to 3 years of age in 1997 to 2-3 months of age today, treating hearing loss before irreversible speech delay occurs has improved the lives of so many children and families in the commonwealth and in the nation, Massachusetts should continue483 to lead by mandating universal screening for CCMV and education of families about this common487 cause of hearing loss and developmental delay. Members of the committee, please act to protect our infants and families from CCMV. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you. At this time, I would aspect of Cheryl Glovsky to join us.
CHERYL GLOVSKY - MASSACHUSETTS CONGENITAL CMV COALITION - HB 2338 - SB 1471 - Hi, can you all hear me? Hi, I'm Cheryl Glovsky. I am a pediatric audiologist at Mass Pioneer and I'm a founding member of the Massachusetts CCMV coalition. I'm testifying today to offer strong support for the approval of Senate Bill 1471, House Bill 2338 an act relative to newborn screening for congenital cytomegalovirus. As a pediatric audiologist. I encounter congenital CMV on a weekly basis and early diagnosis of CCMV is crucial to providing care for these kids. Late diagnosis require implementation of special education services and can certainly add to the financial burden of our public school system. In my work in managing the newborn hearing screening programs, several local hospitals, I have collaborated with newborn nurseries at local hospitals, develop formalized CCMV screening protocols.
One example is the Cambridge Health Alliance, um the nursery recently established CCMV screening protocols and was able to implement them quickly and easily. Just last week, our department evaluated an infant referred by this hospital and the patient was able to receive efficient and appropriate treatment and intervention at a very, very young age. So these screening protocols, these programs do work. All hospitals, especially small community hospitals, are eager to provide the best596 possible care for their patients and this includes CCMV screening as a member of the Massachusetts CCMV coalition. I'm passionate about educating all of our birth hospitals. In the importance of this testing, Massachusetts has the opportunity to continue to be a leader in healthcare By providing necessary universal CCMV screening and education.
I diagnosed many patients with hearing loss attributed to CCMV I would like to also be the voice of the innumerable others for which630 the undetermined cause of hearing loss was likely CMV. But ideology will remain unknown. Studies have shown the incidents of hearing loss in children the with asymptomatic CCMV to be as high as 15%. These are children that are missed, that the preschool elementary school age children that I see. My clinic with wholly preventable late diagnosis of hearing loss. They've struggled during years of critical learning because they didn't receive an easy painless screening at birth. Universal CMV screening will have a powerful impact on our ability to provide timely intervention which with early treatment, early monitoring and early education can make a significant difference for children, their families and our society. Thank you so much for your time. SHOW NON-ESSENTIAL DIALOGUE
Thank you for your time at678 this.
I will ask dr Barbara Morris to to please join us.
Yeah. I just want to make sure you're able to hear me. We can hear you. It's a little robotic but we can hear you okay. Are you sure you want? Human?
BARBARA MORRIS - MASSACHUSETTS CONGENITAL CMV COALITION - HB 2338 - SB 1471 - Thank you. Chairwoman Decker. Chairwoman cover for the members of the committee for the opportunities you can support of this bill. I have been a pediatric cardiologist for over 40 years and have been the coordinator of newborn hearing screening for Basic Medical Center in Springfield and they say Franklin Medical Center in Greenfield since 1998. And I'm a resident. Thank you. I first became aware of congenital cytomegalovirus about six years ago. Well let me do the research on another project. It was shocking to me that despite his prevalent especially regarding its potential effects on hearing it was a condition that had not gotten more attention not only in my field of audiology but in the specialty.
Did you already heard from previous speakers? CMV is the most common congenital effect infection acquired750 in utero in US. Affecting one in 200 births, 85-90% of those are asymptomatic. 20% of those children will have lifelong disabilities including hearing loss, cerebral palsy visual defense, physical mental disabilities and and eve death. 33-50% of the hearing loss is late onset, although preventable with simple changes, 91% of women have never heard of CMV. Screening for seeing for CMV involves collecting a saliva sample from the baby but it has to be done in the784 1st 2-3 weeks of life collecting the sample.
Takes minimal time, requires no special training or equipment in the nursery. It's sent to the lab and a typical viral transport to loud tests, Costs are804 about $45 $200 per test depending on the lab. In November of 2018 media and a program of targeted screening for cytomegalovirus and both bay ST Francis Medical center and Bay State Medical Center. We screen babies who don't pass their newborn hearings for hearing Babies who were born before 34 weeks gestational age. The babies who get other high risk criteria. Although831 our high risk our screening protocol is more expansive than many hospitals. With a combined birth rate of about 4500 babies a year.
They would statistically expect to find more than 20 babies a year. CMV positive. But to date we have identified less than 10848 proving that targeted screening. Although well intentioned. This is the majority of babies who are CMV positive. There's no way back to back track to reliably test for CMV. With universal CMV testing us supported by these bills. It's expected that the middle cost of saliva analysis will likely be rolled into the newborn. Ambition costs compared to the annual cost of caring for CMV baby long term Visibilities which can range anywhere Most of $58,000 to over $300,000 for a year. The lab the of $45 $200 per baby is really in a school. Thank you for your consideration of this really important bill. Thank you for your time. SHOW NON-ESSENTIAL DIALOGUE
Thank you894 for your time. Um At this time I would ask we have two more people as a part of this panel and then we have one more panel on this bill. I would ask Tracy Evans louis sally who I believe is from the new England Consortium on deaf blindness.
Good afternoon. Can you hear me? Okay? I can.
TRACY EVANS-LUISELLI - MASSACHUSETTS CONGENITAL CMV COALITION - HB 2338 - SB 1471 - Chairwoman Comerford and Chairwoman Decker in the committee, Thank you for the opportunity to provide my support for Senate Bill 1471 and House Bill 2338 targeting pre prenatal education, newborn screening for congenital cytomegalovirus. As director of the new England Consortium on Deaf Blindness at Perkins and teachers of the visually impaired serving infants and children in Massachusetts with combined vision and hearing loss, I have witnessed firsthand how congenital CMV can result in significant disabilities, including severe951 visual impairment. Estimates range from 22 to 40 of infants with signs of congenital CMV infection have some form of visual impairment.
Here's how congenital CMV can affect the baby's ability to stay first. The baby may have damage to parts of the eye, such as the retina four seconds. The baby may have cortical visual impairment, also referred to as cortical, cerebral or brain based visual impairment in980 which the child has difficulty processing and understanding what they see. Or finally, the baby may have combination of both damage to the eye and cortical visual impairment. Recent research confirms that cortical visual impairment is the leading cause of pediatric visual impairment in the United States. Many children with cortical visual impairment experience visual1001 deprivation because they are not able to see and interpret their world too often.
Children with congenital CMV have cortical visual impairment that is either undiagnosed or identified years1013 after birth. For example, a child that I worked with who had progressive hearing loss, seizures and limited vision was 10 years old before Congenital Sandy was suspected and cortical visual impairment was eventually diagnosed in summary. Children with Congenital CMV may have vision problems that include damage to the eye visual pathway and the visual processing system. Newborn screening of congenital CMV will identify infants in need of more detailed visual evaluation in order to align intervention services and family supports. And as my Angela once said, when you know better, do better, we know better. The science is here to screen babies and educate women and it's now time to do better. Thank you for your time and consideration of this important bill. SHOW NON-ESSENTIAL DIALOGUE
Thank you at this time I would ask uh italian mango or mongo. Yeah. Ah
TALIA MANGO - MASSACHUSETTS CONGENITAL CMV COALITION - HB 2338 - SB 1471 - Good afternoon and thank you Chairwoman Decker and chairwoman Commerford and members of the Public Health Committee for the opportunity to speak today. My name is Talia Mango and I work for the new England Consortium on Death Blindness, a federal grant that provides services to children who have been diagnosed with a combined vision and hearing loss, which frequently includes children diagnosed with CCMV. As you now know, congenital cytomegalovirus can cause lifelong disabilities Including developmental disabilities, hearing loss, vision loss, physical disabilities, cerebral policy and even death. Currently there are disparities in the prevalence of CCMV infections based on race and ethnicity.
Research has found that the overall prevalence of CCMV is significantly higher in black and multiracial infants. Socioeconomic status also plays a role in a woman's risk for contracting a CMV infection during pregnancy, with one study finding that the area deprivation index percentile is higher among women who have tested positive for cytomegalovirus. Throughout my career, I've had the opportunity to witness the impact that early intervention, early identification and referral has on the lives of children diagnosed with disabilities. I've seen children with very complex prognosis make incredible progress during early intervention services such as learning how to sit up, learning how to really learning how to use the residual vision.
And hearing and most importantly, learning how to communicate their wants and needs. We're also aware that communities of colors, Our community of communities of color are faced with additional barriers when it comes to accessing intervention services for children with hearing loss. An early diagnosis leads to better outcomes by connecting children with educational supports and services during the most critical years of development without identification, many children will go undiagnosed and therefore will not receive the services that they need and deserve. Mandating universal newborn screening and providing prenatal education is the first step in creating equitable access to early supports and services across all communities in Massachusetts. Thank you for your time and consideration of this bill. SHOW NON-ESSENTIAL DIALOGUE
Okay, thank you. Um I have, before I go into I have 1-6
more speakers on on this bill. Um
so before I move on, I will just open this up to any of our colleagues who may have any questions of anyone who has given testimony at this time.
Okay madam. Sure. Yes.
SEN COMERFORD - Thank you so much for the panel. Thank you so much to everyone both. This panel and the parents panel. I'm deeply grateful. As I know Chair Decker expressed, I have a potentially um ignorant sounding questions so you'll just excuse me as I want to1238 grapple with this responsibly. Um Are would it would you consider testing pregnant women for CMV also an intervention sort of a mandatory intervention? I hear testing newborns for CMV within the first early part of their lives so that we could catch it sooner that you've made that case abundantly clear.
But I do wonder in addition to the education that you're suggesting is necessary so that1267 folks understand in addition to kitty litter was said and deli meats. Right. These are things that pregnant women would just have in their heads as preventive measures makes a lot of sense. But is there a screening that that's worthwhile for pregnant women as they are carrying? That could interrupt this? And is there and if they knew, would there be treatment in utero? That could be useful? I just love to grapple with this a bit more.
GIBSON - Uh Senator Commerford, I can answer that. This is um Laura Gibson. So there is no good way to test. There's no good test Christianity for pregnant women. Okay. Um and the testing that there that is available doesn't provide information about risk of having an infant with congenital CMV and so really the standard of care that we in the field advocate for and are proposing is education about behaviors that can reduce1327 the risk for all pregnant women because there's no1330 test that will tell us who is at risk and who isn't. Um And there is no current approved intervention for pregnant women for Sandy.
COMERFORD - Thank you exceeding SHOW NON-ESSENTIAL DIALOGUE
thank you. Um At this time I would invite Margaret Tana from the Boston children's Hospital to join us.
Okay if Margaret comes back we will recognize her. Um At this time I have I have an additional panel. Um These are members1370 from the mass C. M. V. Coalition. Um And I will invite laura antar. Lena antar Michelle Heidi Heidi idea. Um And Indonesia King, if I did not pronounce your name correctly, please do correct me.
Okay so I have laura antar and Lena antar.
Mhm. I don't know if this is an issue of technology or if they are here or not. Michelle. Mhm. Hi I believe that Lena antar and those other people you said submitted written testimony but did not intend to verbally testify. Great. Okay thank you Vanessa.
Uh huh.
Okay. At this time I think that is all for this panel um and for this bill I want to thank everyone who has taken their time um to to join us today and really um thank you and appreciate everything it took for you to1458 share this story with not just us but1465 sharing it with the commonwealth. Um we appreciate that and if we have questions um we will certainly reach back out to you as well. Thank you.
Okay at1480 this time we're going to move on to bill House
23:49
Senate 14 oh four sponsored by Representative Lewis and1488 Senator Sear and act relative to HIV prevention access for young adults. I have a think a panel of Jordan mean who's on the Massachusetts Commissioner on LGBTQ Youth and Marine um memory she from planned parenthood. Marine. Think I saw you earlier. Oh you're still here Marine thank you. Uh huh. Uh
Jordan. Do you want to go first? Sure1511 thank you.
JORDAN MEEHAN - THE MASSACHUSETTS COMMISSION ON LGBTQ YOUTH - SB 1404 - HB 2349 - Good afternoon share doctor trick moment for members of the joint committee. My name is Jordan Meehan and I'm the legislative and policy manager for the commission and LGBTQ Youth, an independent state agency that provides advice and policy recommendations to the commonwealth. And we are here to strongly support S 1404 and H 2349 an act relative to HIV prevention for access for young adults. Like has been mentioned earlier today. This bill would simply expand access to prep for young adults. Prep is a daily prescription medication that can be used by people who are HIV negative and has been shown to reduce the risk of HIV infection by more than 90%.
It's also been approved by the FDA for used by adolescents since 2018. Current state law known as a mature minor rule allows minors to consent to a broad range of health care services, including testing and treatment for STIs and HIV infection. But HIV prevention services like prep however, are not explicitly allowed under current law, which in turn creates an unnecessary barrier for youth to access HIV prevention medication by expanding access to prep for young adults. Under this rule, this bill would implement really a minor change to existing law that would have you have a significant impact in preventing HIV among youth and would strengthen our overall public health. In our written testimony that we've submitted, we've discussed in detail the troubling disparities.
That LGBTQ youth face in healthcare access HIV infection and sexual health risk factors.1612 And with my remaining time, I just want to highlight a few of those data points here. So according to recent data from the Massachusetts youth risk behavior1622 survey, 39% of LGBTQ high school students reported ever having sexual intercourse, Compared to 37 of non LGBTQ students. And while those responses are consistent among both populations, only 41% of LGBT students reported using condoms during their last instance of sexual intercourse, versus 61% of non LGBTQ students. And while about three quarters of LGBTQ students and non LGBTQ students report having learned about HIV and AIDS in school, both populations report far lower levels of comfort in seeking out help and services for sexual health.
Specifically, half of students report ever being taught about condom use in schools. Less than half of students say that they know of an adult in school that they can help find sexual health services. Less than a third of students feel okay asking an adult at school for help with sexual health. And just over a 10th of students report ever having been tested for HIV. Expanding access to prep for young adults in Massachusetts is1684 vital urgent and will go a long way towards reducing health disparities facing LGBT youth across the commonwealth. For these reasons. The Commission on LGBT here Youth urges the joint committee to issue a favorable report for this bill and we thank you for your time and considering the needs of queer and1701 trans youth while deliberating1702 this issue. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you very much. Uh mary. Uh,
MEHREEN BUTT - PLANNED PARENTHOOD ADVOCACY FUND - SB 1404 - HB 2349 - thank you. Hello, Chair Comerford and joe ducker. Thank you for the opportunity to testify today. My name is Mehreen Butt and I'm the associate Director of policy and government affairs at planned parenthood advocacy fund. Today, I'm here in support of S 14 oh four and H 23491722 and act relative to HIV prevention access for young adults. As Senator Cyr and Rep Lewis mentioned earlier last session, the legislature voted to remove barriers to abortion care for young people. PPAF and me want to thank you all for those votes.
Um, this bill is a continuation of removing obstacles to care that affect young people and especially young people of color. PPAF has always supported miners consenting to their own health care, preventative services such as prep should be explicitly allowed under the current law where my miners can consent to their health care for many sensitive services. When the law was passed, it allowed minors to consent to HIV testing and treatment prevention medication did not exist When that law was passed in May of 2018. The FDA approved the use of prep for adolescents. Prep is a highly effective once a day pill that reduces the risk of getting HIV from sex by more than 90%.
Um 14%. Statistically, as mentioned, 14% of new HIV diagnoses or young people ages 14-24 and display disproportionately black and Latino. This bill would create an opportunity to make the HIV prevention pill available to a group with a disproportionately high risk of infection. This small technical change will also serve the spirit of the intention of the law, which will remove a huge barrier to healthcare. PPAF knows that prep is a critical and effective HIV prevention tool that will reduce the number of young people getting HIV. Thank you for the opportunity to testify. We ask for your favorable review of S 1404 and H 2349. SHOW NON-ESSENTIAL DIALOGUE
Thank you. It's good to see you. Um I would ask if any of my colleagues in the committee have any questions for either Panelist at this time?
None. Okay, thank you both for your testimony and your time.
Oh you know I'm gonna finish this panel. We have and then um Senator, lovely. I see you're on there. We're going to go through um this panel and then we're gonna come back to you. Um I have carry richards from Fenway health and then Carl Sorrentino as well. Uh This is Canada wriggles unfortunately, Carl was not able to make it. Um It's just me. I don't know if that affects your decision to hear me. No. Okay so we have you and then that the last person is Tanya Newsome for massequality and then we are off. We're finished with this bill. Wonderful. Thank you. Um
CARRIE RICHGELS - FENWAY HEALTH - HB 2349 - SB 1404 - Thank you, Chair coma for chair Decker and members of the committee. I'm here today is the manager of policy and advocacy at Fenway health and Carlson's his regrets for not being able to be here personally. Um, Fenway health would like to go on record in support of an act relative to HIV prevention access for young adults. I1897 began my work at Fenway with AIDS Action Committee, which is currently the Public Health division of Fenway Health and its mission is to stop the epidemic and related health inequities by eliminating new infections, maximizing healthier outcomes for those infected and at risk1912 and tackling the root causes of HIV and AIDS.
Um and as others have mentioned, this bill would make uh pre exposure prophylaxis known as prep accessible to young people at risk of HIV who already face barriers1923 to health care. Prep is a highly effective once daily medication that prevents HIV by and it1929 reduces the risk of getting HIV from sex by more than 90%. The current1934 mature minor rule allows providers to deliver certain sensitive services, including HIV treatment. And this bill would expand the rule to include HIV prevention. When the statue was originally passed, the idea of HIV prevention medication was not conceived of, and so the law was drafted unintentionally too narrow.
Um and as Jordan mentioned in May of 2018, the FDA approved the use of prep for adolescents. And this bill is a technical fix that would allow the original intent of the law to catch up with medical advances and removed a barrier for young people to make healthy decisions with their doctors when necessary barriers to carry more frequently faced by the most vulnerable in our communities. And LGBTQ youth who do not have access to safe parental consent because their guardians are no longer caring for them or because they are at risk of violence, um are among the most vulnerable and for those young adults at risk for HIV prep is necessary.
Health care. DPH estimates that a small fraction of those at risk for HIV have accessed prep. Um and the current data2006 says that 15% of HIV diagnosis our young people ages 14 to 24 they're disproportionately black and Latinx at the height of the AIDS crisis. The idea of prep would have been a revelation for so many living in fear and hoping for a breakthrough. Now in 2021, when this incredibly effective and safe medication is available, when so many are still at risk, why wouldn't we take every opportunity to connect people to this medication, Fenway health supports an act relative to HIV prevention Access for young adults. And we hope to see this committee reported favourably and support it moving forward. Thank you so much for your time.2053 SHOW NON-ESSENTIAL DIALOGUE
Thank you. This time I would ask Tanya nest. Listen, I may not have gotten that correctly, so feel free to correct me from massequality.
TANYA NESLUSAN - MASSEQUALITY - HB 2349 - SB 1404 - Thank you very much. Chairwoman Decker. Um my name is Tanya Neslusan. I am the executive director of MassEquality. I'm here today in support of S 1404, H 2349 an act relative to HIV prevention access for young adults. Currently, Massachusetts law enables miners to seek treatment for STIs, including HIV and for preventative family planning services. Among other things, it does not currently include minors, the ability to access HIV prevention treatment, which simply did not exist at the time.
The mature minor rule and related statutes were enacted. It would stand to reason that if a minor is allowed under law to access treatment Including HIV treatment, then it would only make sense for those protections to extend the protection of their bodies by including prep on the list of preventative treatments that minors are allowed to access without parental consent. As we know, young people are often loath to discuss their high risk behavior with their parents.
This is especially so for youth who identify as LGBTQ plus, some2130 of whom are not even out to their parents or cannot safely have those discussions. Beyond that. We are schools not have mandatory inclusive LQBTQIA comprehensive sex Ed, which further increases the risk to our youth. Additionally, we needs, we've been facing a marked rise of HIV infections in2145 Massachusetts. It would be nothing short of feckless to leave our youth unable to protect ourselves by passing this legislation.2151 Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you very much. I would ask any of my colleagues if they have any questions at this time.
Okay, thank you very much to all of our, our speakers. Um, at this time I'm going to welcome Senator Joan lovely who has joined us.
SEN LOVELY - SB 1471 - SB 1474 - Thank you. Thank you, madam. Chair to both you madam. Chair and Chair Comerford. Thank you for the opportunity to testify on two bills that are before your committee today. The first is 1471 where you just heard testimony a short time ago on CCMV. Uh, I will just paraphrase written comments that I've already submitted to the committee and tell you that I learned of this myself just a few short weeks ago when I filed this bill, I was unaware of CCMV as a mother of three. I wasn't aware of it when I was having children. I'm the grandmother to a six-month old granddaughter and my daughter was not aware of this either and just to have learned to have listened,
To those who testified parents and professionals, medical professionals that a simple screening. Could really take away heart a tremendous amount of party for so many. So I hope that you will give the bill favorable favorable consideration in your committee today. I also just wanted to testify quickly about The other bills that I had before the committee today, 1474, an act relative to come back from Fetal and infant mortality review. Um, as we know, this would authorize the Department of Public Health to authorize local health agencies to collect and review data for fetal and infant mortality review so we can really drill down and why this is happening in our2265 commonwealth. And I hope that the committee will also give this positive consideration and thank you for your time today. Much appreciate it. SHOW NON-ESSENTIAL DIALOGUE
Nice to see you, thank you for your time.
Um at this time as we move forward, I just want to do a few housekeeping reminders for folks really. I know it's hard, but we're asking people to keep that three minute reminder. Um and if you look in the chat area, there is somebody there timekeeping. And if you have something to say and you want to put it in writing, we're always happy to take your testimony in writing as well. And if you think someone might have said exactly what you want to say, um if you have the ability to maybe abbreviate what you want to say, um and then put the2315 rest of it in writing. That is also helpful. Um at this time we're going to look at House Bill 23 79. Um I have to actually read what this was. I think what I have in front of me is not exactly what it is. So um House 23:53, Senate 15:15
sponsored by rep Lynskey and Senator Roche, an act prohibiting the sale of dextre dextromethorphan to minors.
Um
So I'm gonna guess here,2339 I think we had a little bit of a um is Kyle turk Are you here to speak on that bill? I am, yes. Okay. Thank you. Go ahead.
Okay, do you want me to go ahead now? Yes, go ahead. Oh, I'm sorry.
KYLE TURK - NATURAL PRODUCTS ASSOCIATION - HB 2339 - Um so as I mentioned earlier with the Natural Products Association, we have some Significant concerns with 2339. As written, the bill would prohibit beverages, substances and other ingredients exceeding a caffeine content of six mg per fluid ounce caffeine is arguably one of the most consumed ingredients in the world, and it is also the most comprehensively studied ingredients in the food supply and a typical eight-ounce cup of coffee contains approximately 95 mg of caffeine.
Other sources of caffeine include tea and chocolate. Research2390 suggests about 85% of adults in the United States consume caffeine with an average daily intake of 180 mg per day among children and teens, caffeine uses slightly decreased over time, and according to a recent2404 study, the average consumption of caffeine for those between 12 and 17 is 50 mg per day. Other reports have some other averages hovering around the 35 mg per day, and while caffeine consumption increased significantly during the 70's to early 90s, more recent data suggests that young people are consuming less caffeine than previous generations.
Um, When FDA went out and did um new guidelines for FDA that commissioned the Institute of Medicine to invest investigate this issue so they can make an educated informed decision as2444 part of their efforts to revise caffeine and food and beverage guidelines. The IOM Concluded soda and tear the primary caffeine sources for people 12 to 17 and soda was the number one caffeine delivery method, not energy drinks. Additionally, the legislation unfairly targets energy drinks. Yet it doesn't mention soda or other soft drinks um which would meet the definition of an energy drink under this bill. Um You know, because what is this under this bill? And in fact, if a consumer wants to purchase a product with
The most caffeine, they wouldn't turn to an energy drink, they would turn to soda or coffee. For example, a Starbucks Americano contains 320 mg of caffeine, While I can of Red Bull contains 80 mg of caffeine. Um This bill also fails to include chocolate because if you have more than four Hershey's kisses, you would consume more than 11 mg of caffeine per one ounce, which is twice twice the amount of what the sponsor in tens. Um coffee, chocolate and other products carry more caffeine and would be potential victims of this legislation, hurting small business draining2523 state revenues and drive people into border states to buy their beverages of choice. Thank you.
Rep DECKER - Wow, There's a lot of big sweeping generalizations there, Mr. Turk. Um and you've been really um committed to trying to highlight why legislators haven't written their legislation correctly. So I think it's really important that if that's the standard that any of these sweeping generalizations you make should also probably be held to that same standard. But thank you for your time. SHOW NON-ESSENTIAL DIALOGUE
Any other legislators who might have a question of Mr turk?
Great, thank you. Um at this time I'm going to um ask I believe Carlos Gutierrez, I'm sorry there's a little bit of confusion here. So, Carlos Gutierrez, are you here to speak on the same bill? No, I was actually going to be speaking on 23:53. The dextromethorphan bill. Okay, go ahead. Welcome.
CARLOS GUTIERREZ - CONSUMER HEALTHCARE PRODUCTS ASSOCIATION - SB 1516 - HB 2353 - Thank you. Chair Decker and Comerford members of the committee. My name is Carlos Gutierrez and the vice president of state and Local Government Affairs for the Consumer Healthcare Products Association in Washington, DC. We represent the over the counter medicine manufacturers, including the makers of dextromethorphan containing cough medicines here to speak in very strong support of House Bill 2353 by Representative Dave Linsky. And while we agree for the most part in the concept of Senate Bill 1516, it doesn't exactly match with 2353 and the other 20 states that have passed it.
So hopefully we can get those to um to match and then we would be enthusiastically supportive of both. Just really quickly. Ducks Amador fan, it’s a safe and effective cough suppressant found in some of the most popular colon and cough medicines on the market. It's used safely by millions of Americans, millions of Americans every year. It's a non-narcotic. It has no pain relieving properties and it's not physically addictive. In fact, it's been over the counter since the 1950s. Unfortunately, a small but significant Uh number of teens admit to abusing dextromethorphan.
And when ingested in high doses and we're talking about, you know, 15-25 is the recommended a dose, harmful side effects can occur. Some of those are like dizziness, confusion and loss of physical coordination. So we as an2721 industry obviously we take this very seriously. Um, we have placed a label on our products warning parents and caretakers about the uh potential abuse by the, by the team population. We have partnered with some uh substance abuse organizations around the country and that participated in a social media um education program targeted at teens.
And then the third prong is supporting laws like like what are outlined in the House bill 2353 And partly in Senate Bill 1516. The good news is this2756 has worked. Um, the number of teens that would have been admitted to abusing dextromethorphan has been cut in half Since our, since this program started. Unfortunately, in 2020 we did see a little uptick amongst eighth graders and so it's basically one teen in every American classroom. So one team too many. So in closing, just thanks to Representative Linsky for introducing this legislation and hopefully get to work with senator Rausch hers2786 as well. We would be very supportive of this and encourage your support as well. SHOW NON-ESSENTIAL DIALOGUE
Thank you very much. Um and I think also Paula francois francois, sis
go ahead and feel free. Please correct me. And we can't hear you,
Paula franco's franco's, thank you. That's all right, yes.
PAULA FRANCIOSE - CONCERNED CITIZEN - SB 1516 - HB 2353 - Um Thank you very much for letting me speak2817 today to the chair into the committee. Um Yes, I am very much in support of this bill. S 1516 My son and only child I lost four years ago to an accidental overdose. Um and there he lost his life to a heroin overdose um for nine months leading up to his death. He was not using opiates instead. He was using DXM, which is the dextromethorphan. Um He used it in very large doses, there are four plateaus and he always reached the fourth plateau which would completely make him dis associated totally detached from reality.
He had several trips to the hospital by ambulance a couple of times2872 he called um He also overdosed and was in the hospital for I think four days he was2880 found unconscious. This is very very dangerous, this is a2884 very very dangerous um and abusive substance. My son was addicted, he'd called me up crying, telling me that he couldn't stop. Um Yeah like I said, just just totally detached from reality. Um and like I said to him, it was very addictive, he couldn't stop doing it. Um He had no means he wasn't working for nine months and he was able to walk into any store, any grocery store, any drug store and take just take it right off of the shelves to support his addiction for nine months.
This DXM so it's it's a very dangerous, dangerous ingredient and I heard that it's it's really on the rise for teenagers. You know they're putting pamphlets now, I didn't submit it, but they're putting pamphlets out now in the pharmacies because it's on the rise and like I said, it's so accessible for nine months john and my son, he just went into stores and just took it right off the shelves to support us havoc. So so I'm very much in support of of getting this product regulated um and just educating people because if you don't witness it it's you just wouldn't believe what what this can do to a person sell. Anyway, thank you so much for letting me speak. I appreciate it.
DECKER - Hello, thank you for for coming here and for talking to us and um you know, I know I speak on behalf of all my colleagues. I'm really sorry for your loss. And it is um an incredibly gracious and generous of you to come here and share your stories. It's it's really hearing from people in our state who are2998 willing to tell their stories, not the stories you ever want to tell. But your your ability to tell us um is really what helps inform us and really think about um, all of the bills and the issues before us. So, so thank you.
FRANCIOSE - Thank you very much. SHOW NON-ESSENTIAL DIALOGUE
Thank you.
Yeah. At this time I'm going to move on to the House Bill 23 23 83 Senate 14 oh nine. These are bills sponsored by Representative O Day, Senator Di Domenico, Senator Di Di Domenico and act regarding the pediatric palliative care. Just reminding. Um, this is a large panel. Um if you could please just mind your chat section for the minutes and if you think um what you need to say is being said, we're happy to also take this in writing. I'm gonna go ahead and read off this panel. Um
which is um first one is Christine McMichael, the executive director of the Hospice and palliative care Federation of Massachusetts. Michele O'Neil manager of the Pediatric palliative care program at Bay State Home and Health and Hospital Brenda, aware parent of a3075 child who was aged out of pediatric palliative care program, lindsey co pediatric palliative care program Manager, Isaac Siegel Social worker at the pediatric palliative care program. And note, I'm assuming that meant to say. Notre dame. Notre Dam Healthcare june Ganley social worker of pediatric palliative care program at the Notre dame Healthcare. I think at this time I will if we want to start with Brenda, um we'll start with you and thank you for joining us.
BRENDA ALLAIR - CONCERNED CITIZEN - HB 2383 - SB 1409 - Thank you so much. Thank you, Chairwoman Comerford and Chairwoman Decker for this opportunity to speak today. Um and thank you of course for all of your past support of the pediatric palliative care program. Obviously I'm here to speak in support of this bill. Um I just want to share a little bit very quickly about my daughter Gillian. Um She3126 is 20 years old, she has very complex health needs, um and is a double organ transplant recipients. Um She did, as you stated earlier age out of the program, um we are incredibly grateful for all of the support we received during her time in the program. Um it helped us really get some insight into our own family strengths.
Helped us develop a really strong foundation of coping skills and helped us support her through all of her medical and and other needs. Um you know, I think it's important to recognize that the needs of our children change over time as they become young adults and certainly young adults who have complex and long term care needs. Um Gillian actually was listed for a liver transplant when she aged out of the program um and got that transplant in December. Um as you can imagine that process with a young adult teenager um was very difficult, much different than her transplant when she was an infant. And while we are incredibly, you know, grateful and3186 and really benefited from all of the support that we got while we were in the care programme.
Um through through her being 18, we could have really benefited from the additional support during that time. Um as of course could she and I think it um you know, one of the3203 things that we wanted to recognize is that the experiences of grief and loss for children who are In that 18-22 year range is very different than very young children, as are their parents experiences.3214 And those children are typically also getting ready to3217 transition out of their pediatric programs into adult programs where there generally aren't palliative care support. And so parents need a lot of support in accessing and understanding what will be next steps for them, especially if their children have conditions that are likely life limiting and might struggle with those and the children themselves.
As they age and and get a greater understanding of what that might mean for their own lives. I think it's important to recognize that they can also benefit from those supports. Again, I think you're lucky and I look at Michelle and say thank you so much for all of the work you did with Jill. She definitely used so much of what she learned and we definitely used all of what we learned while we were in the program. But I think I said to the nurses every day that I wish we still had the support of the team while we were going through this. Um, she is doing well now, um, continues to live with severe and significant medical issues. Um, and so I thank you so much again, the committee for your support of this program in the past. Um, and ask that you consider expanding3284 this program as well. SHOW NON-ESSENTIAL DIALOGUE
Thank you. Um, This time we'll go back and we'll start with Christine McMichael, Executive director, the Hospice and palliative care Federation of Massachusetts.
Okay, we'll come back Michelle O'neill, manager of the Pediatric palliative care Program at the Bay State Home Health and Hospice.
MICHELLE O'NEILL - BAYSTATE HOME HEALTH & HOSPICE - HB 2383 - SB 1409 - Hi, good afternoon. Thank you so much for hearing our testimony today. Um, obviously I'm here to support the pediatric palliative care bill. And I wanted to talk about the gap that exists for um, as Brenda was talking about that, there's a really big gap for youth ages 19 to 22 because they don't quite fit into adult services. And most pediatric services continue until at least age 22. And so there's this gap where they kind of fall out and our program provides a lot of support in helping with transitions, helping advocate for patients and their families and providing education for them in making those transitions and helping them with those steps.
Um, we over the past year, our program at Baystate has experienced a handful of patients who have aged out. And I want to tell you just very quickly about two of them that kind of stand out for me. Um one was a young man who was at birth was diagnosed, was with a very rare genetic condition and his mother was told that he would only live days or weeks in November of 2020, he turned 19 um Just3390 weeks after we, you know, just weeks after the second wave of the pandemic hits. So the decision was made just to keep them on the program to things you know, kind of quieted down for a little while. But then on March 11, kind of very unexpectedly he died. Um and our team was able to provide support for him at end of life.
We team members took turns sitting vigil with him at the bedside in the hospital and have been providing bereavement support for his family. If we had discharged him back in November, we wouldn't have been involved any longer and he would have died alone and we would not be able to provide that bereavement support. Another example is a young woman who is just turning 19 in a few days. Um she has something called spinal muscular atrophy and has no feeling below her chest and has a very bad wound on her inner thigh that she's been battling for years. And a few years ago the herd physician recommended a special bed, which her insurance denied repeatedly. Um The pediatric palliative care team worked with her to both educate her on how to be an advocate for herself.
And also provided advocacy for this young woman to um be able to request a hearing. She Um was3475 able to contact her local senator to request her support and finally got had a hearing last week and I'm glad to report that she received her bed but now she's facing another major surgery on this wound and by the time she has the surgery she'll be 19. And we're left with, what do we do now um when she's having this major surgery? So just in summary, um I just want to say that there is a, just repeat that there is a very big gap and it just makes sense to continue the PPCN. services through age 22 to be in line with all of other pediatric services. Thank you very much for your time and consideration. SHOW NON-ESSENTIAL DIALOGUE
Thank you for your time and for your work. Um Brenda. Uh Lindsay co.
LINDSAY COE - HOPEHEALTH - HB 2383 - SB 1409 - Hello, my name is Lindsay. I'm the pediatric palliative care manager at Hope Health. Um We cover the Plymouth County area. Um so like Michelle, of course I'm in support of this bill and um just to not repeat what other people are saying, I'll go right to the examples that we have from our program that supports um extending the services of this program. And that's one case named Lenny and he has been on a program for 10 years and he has a lot of skilled nursing needs. And he relies3559 heavily on nursing support to bring him to school. And so if he doesn't get the nurse that day, he doesn't go to school. And so he's relied very heavily on our program because we provide in home support and especially with COVID, you know, without going to school. And he doesn't really do too well with virtual learning, he's really relied on the pediatric palliative care support um in the home.
And so, And um so having the services end at 19, he will certainly do be a service gap. Um, so the other example I have is Kevin. And Kevin was referred to our3601 program um, you know, later compared to other referrals ages and he had a traumatic brain injury um, from a car accident. And so right after he was admitted to our program, he went into an intensive physical therapy program that didn't allow him to be on our our services because he was impatient. And so by the time he came back on, he was close to being aged out. So he really didn't get the opportunity to benefit from our program. So with the extension of the age he would be so I'm speaking to to kind of polar opposite cases, but they represent, you know, the the huge need for this program beyond the age3645 of 19. So I3647 thank you fear support of this bill. SHOW NON-ESSENTIAL DIALOGUE
Thank you. I would ask this time Isaac Siegel, who is3653 from Notre dame Healthcare,
ISAAC SIEGEL - NOTRE DAME HEALTH CARE - HB 2383 - SB 1409 - Thank you very much. Uh I'm Isaac from Notre Dame Healthcare. I'm a social worker3664 with the PD Pall program and I'm here to advocate for this bill. Uh h 2383 to extend to uh 22 years old. As the previous speakers have said that there's a big gap. I've worked with a number of Patients who have come to age 19 and have had the benefit of having our services where we provide things that help them with their quality of life. Uh we've journeyed with them for, you know, 10 years or more since the program was instituted. And uh then all of a sudden before there's a chance to transition to adult services before they have completed school.
Sometimes when they are just in the process of trying to get to complete school, we have to leave them. So, you know, it's a real deficit for the family. Uh, one case that I can speak3740 about is a family where a student this past year, uh, when the state uh, dropped its requirements to have M class as a graduation, the student was graduated despite being all the time in um, special needs classrooms with low IQ and uh, school drop them. The parents are from a different culture. They've come as immigrants to this country. And even though living here and working professionally for years, they had no idea how to go about the process of advocating for their child.
So in a, in a way that we, um, could bring them together with other services that was very important for them and hopefully they'll be able to reinstate the services that they get through the school for their child. But without us, there would be no one there uh in the case of another child who um has Prater Willy's, who we had to discharge earlier this year. Uh, she um had pulmonary issues related to her disease. We were able to help her throughout the time that she was with us with just movement with encouragement to overcome some of the obstacles that the disease presents her with and uh, ultimately getting her to a place where her.
She's now able to deal3836 with wearing oxygen3838 just to save her life and we've had to discharge her. So that's uh, that's something that the family feels a gap for and that we certainly feel that, you know, there was more work to be done. Uh, one more example of people who have come from uh Middle Eastern country where the disease for their children was treated with hostility. And3869 it's normally disease that, uh, neuro muscular diseases that generates and children die before the age of 10 frequently. They are and they are taking care of their children in a way that they're living to twice that age.
And uh, the oldest one is due to age out of our program, uh, sometime next year. And without us, they would not have uh, people to help them through the process of guardianships, through through school transitions and through pain management and all kinds of things. So you've heard this from others, uh, and3915 also just to touch on it one time, the heart wrenching testimony that we heard earlier from the parents with CCMV. There are3925 clients, they are the families that we work with and we want to be able to work with everybody who's like that. So that's all for me. But thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you, thank you for your time and for your work. Um at this time I asked june Ganley to join us.
JUNE GANLEY - NOTRE DAME HEALTH CARE - HB 2383 - SB 1409 - Thank you, madam, Chair Decker and chair Commerford and joint committee members. I'm June Ganley, I'm a medical social worker at Notre Dame PD Pall and I'm also parent to Katie, an adult child um with disabilities who experienced the transition to the dealt systems of care not too long ago. Um as others have mentioned that gap in services Between ages 19 and 22 Israeli problematic. It comes at a time where there are so many changes taking place. Children are aging out of the special Ed services that they've been provided all their life.
And they're transitioning to adult services that they know very little about whether that's college Dahab or vocational training. They're also leaving, They're having to leave their pediatrician and the pediatric specialists and transition to adult medical care. And some of these some of our clients I know my daughter included has more than five or six specialists on their team. So imagine finding five trying to find five or 67 doctors who care about your child know about their condition. There's a lot of education there goes on there. It's important to get the right fit of provider. We're also obtaining adult medical insurance for the children applying for and obtaining adult housing, adult government benefits.
And as a mom of an adult with disabilities, I know firsthand how complex and disconcerting those transitions can be. Not only are you losing all those trusted providers but you're having to navigate new systems of care. DDS SSI. Adult Dental Care Services. Adult Health Care. It's complicated and it's confusing and without a trusted advisor when can quickly become quite admired in the bureaucracies. By extending the age limit to 20 to these families won't need to enter the waters of adult services alone. They will have the continuity support and guidance of their trusted advisors of their P. T. Ball team. So please help us secure the needed services for these families of children with complex medical needs.4071 Thank you for your time and consideration in support of this bill. SHOW NON-ESSENTIAL DIALOGUE
Thank you for your time and thank you for sharing your personal story as well. Thank you. At this time I would ask any of my colleagues have any questions.
Okay? Thank you all for your time and for your work.
Okay? Um at this time we um we have just a few more people. Um and so three more bills and it's House 24 10 Senate 13 97 sponsored by Representative vargas and Senator Sear enact modernizing childhood lead poisoning prevention. I would ask for Andrea Watson to join us.
Okay um oh I have house 23-93 sponsored by Representative Rogers and Act relative to improving improving asthma in schools. And I would ask if Jane Hansen from the Asthma and Allergy Foundation of America is here. I am here. Welcome.
Thank you. Thank you. Um4140 I don't know if that video is going on or not. It doesn't appear4144 to be is it? It's not but we can hear you so if you want to go ahead, well listen carefully. Okay it says the cameras on but it's not wanting to do that I suppose.
JAN HANSON - ASTHMA AND ALLERGY FOUNDATION OF AMERICA - HB 2393 - Okay. All right well chair Decker and chair Commerford long day for you. Um and members of the joint Committee on Public Health. Thank you so much for this opportunity. Um My name is Jan Hanson and on board president of4172 the Asthma and Allergy Foundation of America New England Chapter and I'm testifying today in support of H 2393 on behalf of Avenue England. And if passed this legislation would help to significantly reduce the burden of asthma for our students and mass public schools by doing several things. Most importantly improving air quality and reducing the rate of asthma symptoms and flares. Asthma is a chronic disease that causes a person's airways to become inflamed, making it as you can imagine, very difficult for these kids to breathe. Quality of life is greatly impacted for those living with the challenges of this disease on a daily basis.
They're dealing with this identified risks for the development or exacerbation of asthma includes several factors such as poor management, poor air quality, exposure to pollen and poverty, gender, race, ethnicity and socioeconomic status are also linked to asthma prevalence. Massachusetts has one of the highest rates of asthma in the nation and the 2019 asthma capitals4229 report published by the asthma and Allergy Foundation of America list Springfield, Mass as number one and Boston, Mass as number eight in the nation. As the most challenging cities to live in. If you have asthma, asthma is the number one chronic illness in children and affects 5.5 million children in the US. The pediatric rate of asthma is actually higher in Massachusetts than the national average.
Not a good thing. And according to the Mass Department of Public Health Asthma Prevention and Control. One in 10 children have asthma in our state and 40% of these children in schools, they're daycare have missed at least one day, usually many more a school due to asthma per year.4274 And these statistics are higher in our communities with underserved populations. As you can imagine with the burden of asthma. Asthma imposes significant financial costs resulting in substantial health care expenditures. So now the good news, evidence based data informs us that better asthma management including creating safer and healthier environments by reducing poor air quality will result in better health outcomes for those living with this disease.
And the CDC. States that with better management4304 and avoiding4305 environmental triggers, asthma can be controlled and in fact the mass Department of Public Health strategic Plan for asthma in Massachusetts 2015 2020 states that getting rid of and reducing exposure to triggers can help prevent asthma from ever developing. That's really really good news. H 2393 outlines a direct actionable and evidence based strategy to help reduce the burden of asthma for our school age children with this disease and our children deserve the ability to breathe and without the burden the symptoms of asthma. And I urge you to adopt H 2393 so that all students in Massachusetts public schools, including those with asthma will have access to a healthy learning environment so that they too may thrive. And I respectfully thank you for your consideration.
DECKER - Thank you for your testimony and I can see you now. It's hard to look like a technology issue on my end, on your end on our general here. So no worries. No worries very much for your, for your testimony. It's um, it's pretty interesting to hear you say that we have one of the highest, not the highest asthma rates when we also have such incredible rate of income inequality.4382 It's got to be a correlation there and and we know there is actually.
HANSON - Exactly. SHOW NON-ESSENTIAL DIALOGUE
So thank you at this time I would ask if my colleagues have any questions for you. No, thank you for your testimony and for your work. Thank you so much. Bye bye. Right. Um at this time I would ask Kimberly malika Um to come forward to speak on Senate 1410 and act relative to newborn infant products.
I'm here. Welcome. Can you hear me okay? I can hear you and I can see you okay? Good,
KIMBERLY MOLLICA - CONCERNED CITIZEN - SB 1410 - So good afternoon, Chair on Decker and Comerford. Thank you so much. Um the Joint Committee on Public Health. My name is Kimberly Mollica. I'm here today before you to ask you to support the bill and act S 1410-related to newborn infant products. I have been in the health and wellness industry for almost seven years and during my journey, I became very passionate about educating people4439 on how to add health to their bodies and their families. Every day I recommend products for both inside and outside of your body for babies to baby boomers. When I became aware that baby products were probably one of the most toxic products on the market and found out that many of our hospitals were still using these products, I made it my passion to do something about this.
Everyone in this room has a choice of what they choose to do about their personal skin care products, but there is a little group that does not, they depend on their parents and health care facilities and staff to be educated on what is safe or not safe to use on4480 their precious skin, on what is safe and under pressure skin. Once brought into this world our babies, the skin is our largest detoxifying and most primitive All organ, anything you put on your baby's skin will eventually end up in your baby's bloodstream and get distributed distributed throughout their body. Ingredients like violates and parabens linked to endocrine disruption, reproductive malformation and boys reduced fertility development disorder, allergies, asthma and cancer. They have also been identified by project tender as a chemical of emerging concern to brain development fragrances is linked to allergies.
Skin irritation and eczema can be toxic to various organs in the body and can be used to mask hundreds of other dangerous chemicals. Finaccel ethanol can cause acute nervous system effects and infants, which4529 was proven in 2008. The FDA warned consumers not to purchase Mummy Bliss breastfeeding cream with phoenix and all um found in the cream was depressing the central nervous4542 system and causing vomiting and diarrhea and breastfeeding infants. And today In 2021, we are still using this ingredient and baby products like this. Um mineral oil and petroleum is from the distillation of gasoline and can be inclusive to the body like wrapping your skin and saran wrap your skin, cannot breathe or detoxified. There are numerous names for this product. 1.4 dioxide is a chemical byproducts, so you won't see it on an ingredient label.
A possible human carcinogen is linked to organ toxicity, creativity and skin allergies. And peg 80 sor bitten larayedh is also in this product when looking up this ingredient is listed as a high overall hazard. And it's still in this product and it's on this graph here today as well as high um el urgent and immunity toxicity. These baby products have been linked to causing childhood cancers, autism, problems with reproduction, and that can also beat up the development of skin term tumors and lesions, lesions. We must prevent our hospitals and birthing centers from passing out samples or gifts of baby products containing these and other toxic ingredients to mothers or caregivers. We need to provide education on what products are safe and why this is so important. We need to give every child a healthy start right from the very beginning of life, their first breath and it's up to us to make sure this is done.
There is nothing more horrifying than telling a mother that their products they've been using on their baby that was given and recommended to them by their hospital how toxic it is. After spending time with a genetic counselor and up 2018, I was told that 10% of all cancer diagnosis hereditary, 15% is familiar and 75% of all diagnosis is environmental. We cannot control all the impact that our environment has on our body, but we can control some of it. Even in the very beginning stages of life we owe our babies and children nest. I once saw a4675 beautiful friend picture of a beautiful friends newborn baby girl lying on her table with a big jug of petroleum jelly next to her. When I asked why they were using that product and if the world could petroleum resonated with him, he said no, no way. The hospital gave it to him.
Um I've also uh I recently saw a television ad regarding probably the largest baby company state that they have removed 50 of the chemicals in their products. This there's just something so wrong with this. I started my journey to be in front of you five years ago. This is my fourth year at the Statehouse for this bill. I know for a fact there are still maternity departments in Boston, our surrounding communities still using chemical ridden products, even in our neonatal4723 units, even with all that we know, let's prevent unhealthy products from being used right on our baby's first day so we can give our babies a healthy start and light right from the beginning. We owe our babies this they are depending on us to make the safest and healthiest choice for them. Thank you for your time and consideration on this bill and I appreciate your support. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you for your time and for your testimony. Um Are there any questions from any of the committee members
at this time? I hear no questions. I have, I have no one else listed to speak. Um Madam Chairwoman. Do you have anyone else who's contacted you? I want to make sure anyone who's tried to speak has had the chance, madam Chair. No I don't have anyone who's contacted me but I do have thanks to you for your beautiful facilitation today. Thank you.
DECKER - Thank you. Um I want to thank all of our colleagues who have sat with us here for the last 4.5 hours listening to um sometimes heart wrenching testimony but all really important testimony. Thank you for all the time and the effort that you put in as members of this committee. Thank you to my my4792 co chair senator Comerford, thank you to our staff have done an incredible job and helping us actually bring our first public Health Committee forward in a4802 virtual manner and um you know to my colleagues. If anyone has any feedback please give it to us, we want to make this um If you could give it to us the feedback maybe after the hearing um that would be great. SHOW NON-ESSENTIAL DIALOGUE
I'm sorry madam Chair, I don't4818 mean to interrupt you, I'm seeing in the chat. Um there is a gentleman who's listed to speak. Oh okay, I don't have4823 them on my list but I will uh mr I have4827 john content if you would say what bill it is that you're speaking on? Uh Yes, Madam Chair, It's Uh House Bill S 1499.
Um Okay, go ahead.
JOHN KONSIN - PRAPELA - SB 1499 - Thank you very much. I'm testifying support as I just said on Bill S 1499, an infant safe sleep pilot program for the state of Massachusetts. My name is John Konsin and founder of Prapela. I'm also principal investigator with the National Institute of Health and I've worked for over 40 years in the life science industry. Prapela is introducing a new technology developed at Harvard's Vis Institute University of Massachusetts in Mass. General Hospital to help4867 babies breathe, relax and sleep in a hospital bassinet for a baby box when using a baby box to provide a safe sleep environment. While it's well accepted in many countries like Finland and the UK, the acceptance of these baby boxes is mixed in the US.
Contributing positive factors include their affordability programs combining safe sleep education with baby boxes, their portability and ease of use. Contributing negative factors include lack of product standards, the stigma parents experience from others that express baby boxes are cheap and the fact that most babies grow out of their baby boxes within four months. It costs4906 about $50 to make a baby box here in New England to meet the emerging standards from ASTM4914 and the Consumer Product Safety Council to meet a higher hospital like standard. The cost increase to about $65. There have been4921 and continue to be safe sleep programs with baby boxes at the state and local levels.
Unfortunately, missing from these programs is a comprehensive review documenting their effectiveness to promote safe sleep and reduce accidental harm or suffocation of newborns. Prapela is supporting this bill because it relies not just on a product. This bill relies not just on a product but on an education program and a commitment to identify and share the findings from the pilot program. There is no state4955 better suited to implement a pilot program and report its results in the great state of Massachusetts. So, on behalf of Prapela, the only new England based manufacturer baby boxes, we support this bill and are willing4969 to support implementations of its pilot program. Thank you, madam, chairwoman and all committee chair members. I appreciate it. SHOW NON-ESSENTIAL DIALOGUE
Thank you. Thank you. I have a couple of other people also who I think we have to other people who want to testify. So if I have any committee members who have any questions of Mr johnson, Okay, thank you for your testimony. Thank you. All right. So I have here for Senate 1427 as well sponsored by Senator Giglio and Act relative to student heart health. Jack Neilan and Jim Maman's.
Good afternoon. This is Jack Neilan. Not sure if my video showing up or not. Okay, great. Um uh
JACK NEALON - MASS HEARTBEAT INC - SB 1427 - Thank you Chairman Decker and charming Comerford and all members remaining here today of the Public Health Committee. We appreciate all your consideration on all of these pressing issues this afternoon. I know it's been a lengthy committee hearing, so thank you for sticking around to the bitter end. My name is Jack Nealonand I am the co founder of the Live4Evan a non profit organization which provides housing to families traveling into Boston for cardiac care. I'm also the co founder of the benefit corporation, Mass Heartbeat, which provides ECG Screenings to high school students here in the commonwealth.
Fist I want to thank Senator DiZoglio and her colleagues. We're shining a spotlight on this issue of student heart health and for putting work into collaboration on this bill which I believe is a step in the right direction to address the issue of sudden cardiac arrest.5066 Um, an unknown fact that sudden cardiac arrest is the5069 number one cause of death of high school athletes in this country. Uh, personally, having lost a friend far too young, um, I was exposed to the tragic impact sudden cardiac arrest events can have on communities across the state, Um that happened in about 2010.
So over the past 10 years, I've learned of all5086 the heroic efforts across the street in the state and the country, of those who have stood up to combat such an issue, Um undetected heart conditions are plaguing the US. and it's estimated that one in 300 students have an undiagnosed heart condition, which could lead to a potential tragedy similar to one that, you know, our community has suffered. It's important to note that preventative educational programming of heart screenings has already mandatory in parts of florida, and similar educational and training bills have been passed in New Jersey and texas. Um, you know, it's not too hard difficult5121 to understand. The Massachusetts offers some of the best pediatric care in the country.
The state already has educated legislation around AD Accessibility to deal with episodes as they are occurring, and now we'll have the additional resources to actually prevent issues before they occur. A three minute electrocardiogram e. ECG Test can save students life. I know this because5140 mass heartbeat is screened over 300 students across the state and diagnosed a dozen of undiagnosed conditions. And students, students and their parents deserve the opportunity to learn of the severity of sudden cardiac arrest as well as to take steps to educate themselves as the preventative resources. I greatly appreciate the opportunity to appear before this committee and5160 ask you please consider working together to pass this bill. Thank you.
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Thank you and thank you for sticking around with us. Uh, thank you for your work as well. Um, I would ask Jim Ramona's if he's here to join you.
Okay? All right. I think that is all I have. You don't see any other hands in the virtual world there or in my text. Um Want to just thank um Again, thank you to all of my colleagues. Thank you to my co chair. Thank you to our staff have done an incredible job, and um at this time I would motion that we adjourn.
Thank you.
Okay. Bird5206 Journey between the virtual adjourned. Goodbye. Thank you.
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