Vermont Legislature SmartTranscripts:

[Sen. Virginia "Ginny" Lyons (Chair)]: Yes you are. This was an awesome time. All right, so this is Senate Health and Welfare. It's Tuesday, March 31, and tomorrow is April fools day. Believe you might even know this old. So, we're picking up where we left off on the Rare Disease Advisory Council bill, age 46, and Sarah, thank you for being here. We're gonna introduce ourselves to you first, and then you can introduce yourself and give your testing. John Morley from Orleans. Nice to meet you. That's from Orange. Ginny Lyons, Chittenden Southeast. Larocque Gulick, Illinois. Ann Cummings, Washington.

[Sarah Elliott, constituent from Glover]: Nice to meet you. I'm Sarah Elliott. I'm a constituent from Glover. It's your main senator. It's nice

[Sen. Virginia "Ginny" Lyons (Chair)]: to meet you. You want me to just go ahead and get started? Please, go

[Sarah Elliott, constituent from Glover]: right ahead. I did submit written testimony, so it is available

[Sen. Virginia "Ginny" Lyons (Chair)]: to That is exactly perfect. Thank you. Awesome. Good morning, Senator.

[Sarah Elliott, constituent from Glover]: It's almost afternoon. My name is Sarah Elliott. I am a constituent from Glover, and I am a patient with a rare disease. I want to thank you for considering this bill and inviting advocates like myself to come in today to talk about Bill H46 to establish a Rare Disease Advisory Council in the state of Vermont. Rare disease is a bipartisan topic. It can impact individuals from all parties in the same way that disability can. I grew up in rural Vermont with a rare skeletal condition, giving me valuable and unique insight and perspective into the various systems in Vermont, as well as other parts of the country. My experiences with these systems have been varying, some not always pleasant, but because of the work of our legislative body, you, our senators and the representatives over in the House, I have personally witnessed improvements in these systems that have increased my ability to access services and medical care to manage my rare disorder. I have a form of diastrophic dysplasia, which results in my stature being shorter than average, but taller than the typical diastrophic dwarf. I also deal with a lifetime of chronic pain, respiratory issues, fatigue, and quite frankly, with mental health that can feel more difficult than the arthritis working its way through my spine and joints. Like I said, Vermont has made amazing strides in the programs and services available to individuals with some types of disabilities and more common disorders. Expanding these offerings to the rare community will continue to make our state a place that is accessible, safe, and welcoming. Ensuring the has passed is a step in that direction. An effort of the RDOT I want to touch on is the newborn screening and consulting with experts to develop policy recommendations. In Vermont, we currently screen for 35 genetic conditions on the newborn screening panel. That puts us on the lower end of the list, with other states testing for much more, sometimes even double this number. Early testing is important as it allows families to make decisions about health care that might not otherwise be available and to connect with specialists and other families early on, which is truly priceless. I never met anybody else that had morphism until I was late in my teen years, and prior to that I had been traveling out of state for seeking medical care. While there is no need to cure or treat dwarfism, some individuals, sorry, individuals with various types can lead long fulfilling lives, but there are some treatment options available if people wish to choose that and those with E symptoms later on. They are currently only available for achondroplasia, which is the most common form of dwarfism. These treatments need to be started early. The growth hormones need to be taken from as early on in the child's life until about 18 when the growth plates close. Historically, the wait and see approach was used with many forms of dwarfism, and it has resulted in more costly medical conditions later in life, and sometimes even death. Personally, I was misdiagnosed and it took twenty five years to meet with genetic specialists because we didn't know to question the diagnosis or that getting a proper diagnosis would be important. It then took another ten years to actually get the clinical diagnosis I have, and that was only possible when I was pregnant. They let me do the genetic testing. I wasn't able to afford it out of pocket prior to that, but it was covered through my pregnancy. Having a proper diagnosis has been important to getting providers to listen to my needs, as there's not much research currently done on the type of dorfism that I actually have. There are over 400 different types of dorfism currently. Being able to attend conferences and learn from experts in the field and bringing that back to my providers has been truly helpful, and they've commented on that. Continuing to access medical care that helps me stay healthy while also considering the true developments of my body is why I support the establishment of the RDAC until age 46, and why I advocate so strongly for the needs of both the rare community and the disabled community. Thank you for your time and your support on this extremely important topic. If you

[Sen. Virginia "Ginny" Lyons (Chair)]: have any questions, let me know. Thank you. That's really helpful. And your comments on early screening, newborn screening, make a lot of sense. So we will look at your testimony and we'll continue to look at the bill and offer improvements to it. I think it's one that we're considering passing out of here. So this is good. Thank you for being there with us. Thank you so much for Thanks your for driving in. I don't know what the roads were like this morning. We call it. They went. Yeah. Good. So, now I'm going say it right. Elisa. You got it. Okay. Thank you, I should have known you were. Don't worry. Thank you for being here. Good morning, I'm Elisa Stahlberg, I'm the director of Family and Child Health at the Health Department. I am joined by Sydney Williamson White on Zoom somewhere. Okay. She may be waiting.

[Alisa Stalberg, Director of Family and Child Health, Vermont Department of Health]: She's the She's a newborn screening program manager at the health department and really the- She's right there, Thanks for her. She's got your back. Hello. Good morning. Sydney, do you want to introduce yourself quickly?

[Sydney Williamson White, Newborn Screening Program Coordinator, Vermont Department of Health]: Sure. I'm Sydney Williamson White. I'm the newborn screening program coordinator for the health department.

[Sen. Virginia "Ginny" Lyons (Chair)]: Well, thank you all for the opportunity today to discuss this important effort to support the rare disease community within this committee. The department recognizes the significant impact rare diseases have on individuals and families in Vermont and the importance of rare disease monitoring and research. The department is enthusiastic to continue its work to sustain the many efforts currently undertaken to help address rare diseases through screening, data collection, partner collaboration, and disease prevention's health promotion. The department also supports this important legislative 10 of age 46 to elevate the voices of individuals and families living with rare diseases and work to strategically identify and address barriers to adequate and effective identification, treatment, and support. The House made several edits to the bill as introduced to address concerns the department shared about resources and the ability of a volunteer based council to realistically achieve the activities identified in the bill.

[Alisa Stalberg, Director of Family and Child Health, Vermont Department of Health]: The current version of the bill includes a list of activities that provides a set of options to the council, which will allow the council to have a voice while working at the case that Grace Services will allow. It will also allow more time for partners and individuals with lived experience to identify efforts that best fit Vermont's needs and empower the council to articulate its own goals and resource requirements in due course. Given the uncertainty regarding the stability of federal funding sources that currently support a significant portion of our work at the health department, the department needs to ensure its role would be limited to basic support of each consult. The department can provide legal, technical and administrative assistance required in the bill. This assistance would be limited to tasks such as sharing information about open meeting laws, scheduling assistance, maintaining a webpage, and providing access to virtual meeting platform software and physical meeting locations. The department would not be able to perform research analysis or policy on legal work on the community council. The department welcomes the opportunity to continue conversations with the legislature and other partners to find the most appropriate and impactful way to support the rare disease community in Vermont. We would appreciate the opportunity to follow-up with minor edits to the bill to help improve coordination between the proposed Rare Disease Advisory Council and existing efforts of the department, as well as enable the council to achieve its important objectives given. In June, I'm happy to answer any questions you might have. So, it would be great to have your comments in writing.

[Sen. Virginia "Ginny" Lyons (Chair)]: Yes, would. Then if you have suggestions for improvement, will go along with them. Yep. We will definitely. Looking up at your back. Would you like to make any comments at this point, Chittenden?

[Sydney Williamson White, Newborn Screening Program Coordinator, Vermont Department of Health]: Not currently. I believe that Elisa has covered that well in the comments that we would be submitting, would cover that as well, as long as you don't have any questions for me.

[Sen. Virginia "Ginny" Lyons (Chair)]: So I do have a question and that is how many, rare diseases do you currently sort of collect and keep track of? I know we're gonna have the medical society testify in just a minute, and they may be the ones that are reporting all of this, but how many Nope, okay. So, do you get a report on rare diseases from anywhere within the medical community, or is it a result of the early testing? How do we know that we have rare diseases in our state? Well, Sydney can speak to sort of how the newborn screening program works and what we screen for. We do have a birth information network where information both that comes from the newborn screening program and that's also reported to the health department through healthcare providers' report on a list of certain conditions. And then there are a handful of registries, but for the most part we're not currently doing comprehensive monitoring. Yeah, I'm not thinking about a registry per se. I know we started the ALS registry a few sessions ago, but I'm thinking that just knowing what's out there and then treatment modalities were based on who's got what and connections with experts, maybe not in a state, but out of state, any of that information that's available to families instead. We don't have a comprehensive system for that. Mostly the medical community manages that on a goose by goose basis, and they might know what their panel is. Okay, other questions for me? Well, we'll look for your testimony, and we will, Sydney, I think we may have you come back and talk more broadly about, and in-depth about the newborn testing piece and what actually exists within the department. You good? That sounds fair. Good. And Jessica is here. Sure. Jessica Chittenden, Department of Health, Policy Director. I just wanted to point out to the committee that last year, in a previous session, the legislature had required a report on the Department of Health's rare disease efforts and we did send that to your committee last year.

[Jessica Chittenden, Policy Director, Vermont Department of Health]: We've got it. Yes. Good. We'll put that up on our agenda as we hear from you and that'll be helpful. Give us the full picture.

[Sen. Virginia "Ginny" Lyons (Chair)]: Just one heads up, I'm gonna ask someone at some point in time, I'm gonna page four of five, where did I oh, under five, line seven, any other activities identified by a majority of the advisory council? I don't know what that means. Don't know what that means. Well, that'll be a good discussion for us, and maybe the Department of Health can have. Sure, sure. Okay, good. Thank you, Ann. This is good. And we have Jessica Barnard of BMS.

[Jessa Barnard, Executive Director, Vermont Medical Society]: Good morning, Jess. Good morning. Jessa Barnard with the Vermont Medical Society. My testimony will be fairly brief. I think you've really heard from the most important voices in this conversation, which are the individuals with lived experience, as well as the Department of Health who's tasked with doing some of the work. I will simply say we understand the importance of the work and the interest in having a council, and we are the only reference in the bill to our organization specifically is appointing a physician who may be able to participate in the council,

[Sen. Virginia "Ginny" Lyons (Chair)]: and we would be happy to do so.

[Jessa Barnard, Executive Director, Vermont Medical Society]: That is all. I'm happy to answer other questions. Didn't have anything more comprehensive prepared for

[Sen. Virginia "Ginny" Lyons (Chair)]: you this morning. That's fine. This gets us started. Now we know what's not out there. This is good. Yeah. Yeah. Good. Good. Questions for me? All right, so we'll pick this one up and we'll look at the report, we'll listen to what's happening in the department currently or not, and then sort out how far we can go with the physician. All right, so can you just let Jen know? She's out, she's out. Anything else? Again, everybody else for being here. And then we are all And you know what? Make sure we have your testimony in writing, and that's very helpful. If you think of other things that would help someone else or would have helped your family early on, those are the things we need to hear about. Because even if we have a council that's making recommendations, we can put such as or including so that they're considering all of those steps you had to take for the problems you faced. Okay, awesome, thank you. If I think

[Sarah Elliott, constituent from Glover]: of anything else, I will let

[Sen. Virginia "Ginny" Lyons (Chair)]: you know. Thank you very much. Have a good day. Alright. You too. Thank you, Alicia. Thank you very much. Thank you. Yes. We're about to do something dramatic. That's a thing. I know. I thought of a lot of changes. I I woke up in the middle of the night. I and I started thinking about how could we fix this bit? And now I said, no, no, no. We can't do that. We can't do that. No. Well, I think a lot of things we could put into it. Oh, my gosh. Actually, Leave on. Again, thanks for being here. We have H84. H84. Yes, we'll just put it up on the screen to remind you. Jen Harvey, Office of Legislative Counsel, H-eighty four is an act relating to allowing telehealth appointments to be reported with patient and provider consent, and it amends two provisions in Title 18 on healthcare providers delivering healthcare services through telehealth, in this case through telemedicine or stored forward means in the first section, and audio only telephone in the second section. And it amends provisions both sections that currently prohibits a healthcare provider or a patient from creating or causing to be created a recording of the provider's telemedicine consultation or telephone consultation with a patient, and this adds in both cases unless both the patient and the provider consent to go to clinic. It would take effect on something complicated. Okay, questions. And this could happen up front if there's HIV available when you go to a portal. There's just a little click you can make and it's all done before you have your audio only or your video appointment. So up front, it'll not be done at the time of the appointment. So we didn't put that in there. That's implicit. And I will make that suggestion. It's not specified. Requires consensus. Alright, committee, any questions of Jen? Anyone around the room would like to make a comment? Senator, can I have some HIPAA questions, and I don't know if that's

[Sarah Elliott, constituent from Glover]: Oh, those are the time? Is Let's just get in mind.

[Sen. Virginia "Ginny" Lyons (Chair)]: Under HIPAA, what is the legal requirement to get rid of documents? Know, shredding. How long do they have to hold them? Exactly. That's a good question. Yes. Don't know if HIPAA addresses them. I'm gonna look at it, but I don't think HIPAA addresses the length of time that medical records have to be kept, although there are requirements around that. They're not HIPAA related, though. Go ahead. I've got a yes. Go ahead. Devin Green from Buzz. This isn't HIPAA, but related to the technology that I was talking about. When I testified that ambient technology, my understanding is that it's held for thirty days and then deleted.

[Devin Green, Vermont Association of Hospitals and Health Systems (VAHHS)]: Thank you. So would also, this is a question I guess, it could also be when a physician retires, then they have to hold their records for seven years and have those records available to patients for seven years. So, could be a written summary extracted from this. So was there any discussion about that, do you know, in the other chamber?

[Jessa Barnard, Executive Director, Vermont Medical Society]: Jessica Barnard, Vermont Medical Society, they did have some questions around sort of what is the record of the appointment because there was a physician who did a simulated ambient visit and they asked sort of, well, what's the actual sort of, what goes into the actual medical record? And that is the written report that the provider then reviews, edits, saves in the medical record. That's what's saved and would be saved with any record retention, you know, seven years, ten years, kind of depends on, depends if you're a minor, various things. That saves, it's the actual audio recording, that is destroyed, it is not really considered part of the record, that's sort of the original transcript that gets then

[Sen. Virginia "Ginny" Lyons (Chair)]: turned into a note. It's used differently. It's used differently. By the practitioner and the patient.

[Jessa Barnard, Executive Director, Vermont Medical Society]: Think neither remains available after that note is created and saved in the medical record. That is then what's available to both the practitioner and the patient.

[Sen. Virginia "Ginny" Lyons (Chair)]: Does that answer your question? That does. That's great. Was a good question. Anything else? Oopsie, how this ties into the AI discussion. Probably. This is really a step of that. It is. Okay. Any other questions? So I would entertain a motion. I'll make a motion to take out the past favorably aged 84 as passed by the house. This is your first one, right? That hasn't been changed from beginning to end. I think it's one of the few. Nuts. I don't think I have many firsts. All right, discussion committee, are you okay with passing this out favorably or Pat? Probably not at this point. Okay. So, Mr. Clerk? Sure. Senator Benson? Yes. Senator Cummings? Yes. Senator Gulick? Yes. Senator Morley? Yes. Senator Lyons?

[Sen. Virginia "Ginny" Lyons (Chair)]: Yes.

[Sen. Virginia "Ginny" Lyons (Chair)]: So is there someone who is excited about reporting this? I'm sure. I mean, I've had the equivalent s bill in here. So I Oh, well, yeah. Definitely, you should. Yeah. That would be great. It came to me. Yeah. I can stitch it myself. That would be great. Okay. Sorry.

[Sarah Elliott, constituent from Glover]: I'm running you. Senator. Yeah.

[Sen. Virginia "Ginny" Lyons (Chair)]: Because she put a companion bill in there. Okay. That's At $2.45, yeah. Thank you, Jen. Good job, Jen. Thank you, everyone. Thank you. Thank you. It's a little thing, and it's a pretty We big understand. Can't make light of it. So, we're finished. We're going to look at H-eight 14 tomorrow, is the artificial intelligence bill that Senator Benson just brought up. That's gonna be about And Representative Chittenden is coming in to explain the bill and it's my understanding that he has exceptional knowledge in this area that will be extremely helpful to our understanding. So, it'll be great to have him. He's been on the forefront of this issue for a while. Yes, has. When we started, I said, oh, why are we doing this right now? Now we know. So we are going to call call a wrap, and we'll come back tomorrow