Vermont Legislature SmartTranscripts:

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: You're fine. Alright, so good morning. This is Wednesday, April 8, Senate Health and Welfare Committee, and we're going back around to look at age 46. We're going to see a new draft of that bill in a minute with Katie. We first, we have folks in to provide testimony. I thought we'd do that first, and then we'll go look at the at the new draft of the bill. And I thank you all for being here. I know for some of you, it's your second time in here, and we're glad you're here. We learned a lot last time and we expect to learn even more this time. So Carolyn Sheridan is here with the National Organization of Rare Disorders. Carolyn's welcome. And you're the first one to in a comical year. Thanks to Senator Benson. Thank you. Senator Morley. Do you know everyone around the table?

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: I do, I remember joining you all in February for Correct. Disease I haven't seen you

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: all yet. Thank you so much. So, why don't you introduce yourself for the record, we'll go right ahead.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: Absolutely. Good morning, senators. My name is Carolyn Sheridan. I serve as NORD's associate director of state policy. I'm actually just celebrating my three year anniversary with NORD. And in my role, I design the government towards state level policy efforts for all 50 states, DC, and our territories. So, I am really, really grateful and excited to be back with all of you today, but this time to speak more specifically on age 46 and the efforts to establish a Rare Disease Advisory Council here. So, last time I was with you, we spoke about Rare Disease Day and the rare community as a whole. So now we're going to build on that foundation a little bit. So this is a community of thirty million Americans living with any of over 10,000 known rare diseases. So if we apply the NIH estimate of one in ten Americans who are living with a rare disease, and apply that to the twenty twenty five census data from the Census Bureau, we're gonna be talking about 64,466 Vermonters. So just about a year ago today, on Wednesday, April 16, the Vermont Department of Health gave a presentation before the House Committee on Human Services, and that was in fulfillment of a statutory reporting requirement under Act 164 of 2024. And that act asked the department to come before that committee to describe the public health impact of rare disease here in Vermont, and to describe the department's role in addressing rare disease statewide. And we learned a few things. We learned that Vermont's Department of Health is really already doing really critical work for our community. The newborn screening program flags rare conditions early in newborn babies, so that families can access supported care. Your birth information network, or the BIN, collects data on over 115 conditions, many of which, but not all, are rare conditions. And then, drawn, that data for the BIN comes from medical claims, the newborn screening program, and your vital records system. And then between 2018 and 2022, we have learned that four percent of Vermont infants had one or more of the monitored conditions, some of which are rare, some are not. And then we also know that the Department of Health helps manage the state's cancer registry and the ALS registry, which capture additional rare disease populations. Many, but not all cancers are rare, but all pediatric cancers are rare, and ALS is a rare disease. So this infrastructure is really valuable and very, very appreciated, and it provides 50 great data, and the newborn screening program has really good follow-up services to connect people to care. But what those services can't do on their own is translate that knowledge into

[Lauren Bode (Legislative Liaison, Vermont Pharmacists Association)]: kind of

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: coordinated policy action. And that is where we see age 46 coming into play. Identifying gaps, elevating the patient voice, and then giving lawmakers a trusted expert body to consult. So, age 46 isn't asking to build from scratch, it's kind of seeking to activate what is already there. And I think what does, I did wanna speak on following up on Sarah's great testimony last week, that the council's newborn screening function, I think, does deserve a good particular attention right now. Nearly eighty percent of rare diseases are genetic in nature. So the geneticistgenetic counselor seat that is built into this council's membership is gonna be essential to the council's ability to do its work really well. And that is going, that expertise can help inform the recommendations that they're going to be needed to make good, high quality recommendations to the state's newborn screening program. And with the newborn screening landscape being in flux, even at the federal level, that makes that kind of in state expertise all the more valuable right now. As far as national evidence for ARDAC, so I do this work across all 50 states. We now have 33 councils nationwide, and we have actually been able to generate quantitative data that kind of proves the benefit of these CASLs. So each year, NORD issues our state report card, where we grade all 50 states plus DC across nine policy issue areas on, you know, like a report card in school, an A2.5. And we were able to determine that 70% of the states that came in at an A or a B overall have one of these RDACs. And that was even controlling for

[Unidentified Committee Member]: the RDAC grade itself, as you do get a grade for that.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: And then we also saw that states with an RDAC show a statistically significant improvement in their overall policy GPA. That And was the difference between a C plus and a B-. Councils nationwide are resolving medication coverage disputes, they're supporting patients' insurance issues, and they're launching IRP approved, state specific population surveys to help get a better sense of the questions of like, how many rare disease patients do we have, what do they have? So Vermont is the final state remaining in New England to join this community, but I did wanna just make sure that I, because I mean this truly, this, the Vermont process, has been a joy to be a part of. This is a patient, coalition driven effort from the start, and experiencing your communities, the Vermont community's minded approach makes me really optimistic about what the council's gonna accomplish here. I really believe that it could be a high value, trusted space for Vermont's community to solve shared challenges together in a way that will improve the system for everybody. So, thank you so much for allowing me to be here again today. I've been following the bill discussions, so I do know there's been some discussions related to amendments on typographical corrections, which fully wholeheartedly support, and then tweaking some of the reporting language. I'm excited to hear a little bit more from Katie. Yeah. NORA does not intend to be a barrier to any of those discussions.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: And one of the discussions that we have had, and first of all, you very much, and thank you for your work. That sounds, you know, consolidating information across the country is really important, very helpful. And one of the conversations that we've had around the table is adding language in related to long COVID. I don't know that it's going to be collected with respect to the advisory council, but at least to have some information disseminated to the Department of Health or help patients with long COVID, where they're not currently getting it. That just varies. It may be separate from the section on rare diseases, but not separate. Okay. Yeah, thank you. Your thoughts on that at some point?

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: Yeah, so generally when we're identifying rare disease and talking about rare disease, we do typically exclude infectious diseases that have a known protocol of treatment. However, long COVID, in terms of prevalence, I believe is technically under that two hundred thousand threshold right now. So, but generally, for our purposes, we do tend to exclude

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: infectious disease, that's rare. Understood. Questions committees. Thank you. Thank you so much. We have your testimony and information here on our web page. Should I talk about Yes.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: And I am, if I can really quickly, I wanted to introduce, I have a few friends with me. This is Mary Scott. She's from Northfield. Welcome. And Sharon will speak to you next. This is Mike Dowling, your constituent, madam chair. This is Dawn, and then you've all met Sarah, and her daughter Sophie's with us today. That's great. And her mother. You may as well.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: This is a family place. Thank you all for being here. So Carolyn, next, she'll come right up. Yeah. Thank you for being here. Thank you for inviting me. So sorry for the mask. What I'm going to do for you before we begin is we're going to introduce ourselves. Okay. That you haven't had that experience yet and that will help other folks who are in the room who haven't met us. So, we'll start over here. John Morley, Orleans. Okay. John Benson from Orange. Okay. Ginny Lyons from Chittenden Southeast. Martine Larocque Gulick, Monroe. Ann Cummings, Washington County. Okay. Thank you. Go right ahead. Thank you for So, taking my name is Sharon Radke and I live in Milton And I'm here to support age 46 to establish a rare disease advisory council in Vermont. My rare disease is called congregus vulgaris. It's an autoimmune blistering skin disease, which I have in my mouth, nose, throat, and esophagus. Some people with with pomphigus have it all over their scalp and skin, but I've been lucky enough to walk down that path.

[Sharon Radke (Public witness, rare disease patient)]: One in three million people are affected by Von Pigus, and I've only met one other person in Vermont. So big and I've been here almost twenty years. There are no blistering skin disease doctors in Vermont, however, I was lucky to find a dermatologist who had experience in diagnosing the disease in 2013. Most rare disease patients take two years or more to be diagnosed. Hephagus patients have the most success with rituximab infusions, which is a biologic. And I have had 14 rituximab infusions, that's the reason for the mask, since 2015, and each infusion costs $25,000. 13,000 of it is just the bag of medicine that they bring into the room. Yes. Since 2015, my infusions have totaled $350,000. And I thank my lucky stars that I have good medical coverage. However, what do other people do who do not have insurance? I actually know some people who get to sell their homes in order to pay for their treatments. That is why I've been working at age 46 to establish a rare disease advisory coalition in Vermont. People with rare diseases really need a place to go for advice and support, especially when they are first diagnosed. Just remember when you walk into any room, 10 or more of the people in that room, at least one of them has a rare disease that they're dealing with. And I hope you will consider establishing a rare disease advisory council in Vermont. It will definitely make a difference in our lives. Do you have any questions? That was short and sweet. No, thank you for your testimony.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: We do have it here on our webpage, which is helpful. Sharon, it's very good. Thank you. All the questions for Sharon. So, in terms of finding support in Vermont, you have had that with I have found, I did find a good dermatologist. Yeah. And I've actually had to the support I've gotten mostly has been through the pemphigus site on Facebook. Mhmm. And it's people from all over the world get pemphigus. And, so that's really been my support network. And I've met some people like in New York State. But, you know, it's just one of those things. When I got the one and only one, we were in having infusions together and we kinda looked at each other and went, oh my gosh, it doesn't talk about a zebra. So, any other questions? So, vision, tele remote has really helped you. It has. Actually, during COVID I was able to do tele visits with the best treatment center in The United States, University of Pennsylvania. And so during that time period, I met with the doctor there on the line. I never went and saw him in person and he was able to get me into remission. So I was in remission for a couple years, but this disease is, very unpredictable, and I unknowingly had some in my esophagus. Yeah. And I almost died. I, and, they rushed me to the hospital. So that's why I have to doing the infusions because it's very unpredictable. Before 1950, before prednisone was discovered, people always died from this because there was no way to control the sepsis. It works really well with us, but you can't stand it very long. Prednisone adds life to your years, but it can't be a life. Very quickly. Thank you. Well, thank you very much. Yes, thank you. And we'll hear, okay, I'm gonna say the region. Thank you. Elisa, Elisa is on. There you are. Thank you for being here.

[Elisa Stolberg (Director for Family and Child Health, Vermont Department of Health)]: Thank you for having me here today. Again, my name is Elisa Stolberg. I'm the Director for Family and Child Health at the Health Department. And I am also joined by my colleague, Sydney Williamson White, who oversees our newborn screening program, who hopefully you can also see online. I'm sorry, I can't be there today. But I'm enthused to be here again today. So we at the Health Department really thank you again for this opportunity to discuss this important effort to support the rare disease community with the committee. Today, we're going to focus our testimony on a walkthrough of the Department of Health's markup and suggested revisions, which I believe we just submitted to you all. So you should have that momentarily if you don't have it yet.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Oh, good. Right. No, we'll have to refresh and we'll get it. I think Jessica has just sent it over to Calista. Yes.

[Elisa Stolberg (Director for Family and Child Health, Vermont Department of Health)]: Correct. So we are suggesting

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Oh, Louise, do you want to share your screen and put it up or not?

[Elisa Stolberg (Director for Family and Child Health, Vermont Department of Health)]: Have, I can't do that.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: You do that? It will help folks who don't have a screen. We'll just, just hang on a sec. Sure. And Jessica will put her screen up and then we'll all see it here. Yeah. Now we've got it. So I have I have your memorandum. I have your presentation, and I have, the proposed markup.

[Elisa Stolberg (Director for Family and Child Health, Vermont Department of Health)]: Excellent. So so, we are suggesting some revisions to the appointment process, proposed 18 BSA 981 B. Our suggested revisions provide the Commissioner of Health and other professional organizations with the authority to appoint members of the Rare Disease Advisory Council instead of the legislature. These suggested edits will help ensure that the work of the RDAC is well coordinated with the efforts of the department, and also respond to concerns expressed by the committee about the legislature's ability to make these appointments. So, the suggested revisions also include language to clarify the appointment process, including term lengths, how vacancies will be filled, and the removal of appointed members. This is typically provided in statute for other advisory committees and we recommend similar language to be included here.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: So why don't you go through, let's say we've got a parent, one of those goes through who's there. We have two individuals living with lived experience living with it. So all of the that's Commissioner of Health are all of the appointments by the Commissioner of Health, then there's the Vermont Medical Society, Nurses Association, the Pharmacy Association, the genetic counselors appointed by the Commissioner of Health, and others as deemed necessary. The nurse. The nurses, yeah. Okay. Understood. Alright and then currently some of these appointments are done by either the speaker or the committee on committees and we can look at that. One two I think the professor probably has the expertise needed. See what he thinks. Yeah. Four. So alright. Let me ask, Carolyn, in other states that, what, how are those appointments done?

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: It varies state to state, but we have seen that model before and it works

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Pretty well. Pretty well. Yep.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: Including a few of your neighbors.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Is NORD ever involved in appointments or serving on any of these councils? Okay, so go right ahead. It's Elisa.

[Elisa Stolberg (Director for Family and Child Health, Vermont Department of Health)]: It's like Lisa with an I in front

[Courtney Harness (Blue Cross Blue Shield of Vermont)]: of us.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: It'll get there sooner or later.

[Elisa Stolberg (Director for Family and Child Health, Vermont Department of Health)]: It's a hard one. Okay, moving on. So we're also recommending a revision to provide flexibility to the RDAC to collaborate with others, proposed 18 BSA nine eighty one B3. So, the current language in the bill requires the RDAC to collaborate with any other relevant stakeholders it deems appropriate. We suggest revising this to allow for, but not require collaboration with others in order to provide flexibility to the RDAC.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Understood. Understood. Was there a reason that you can remember, and we'll try and sort that out maybe with regards to counsel, why the house felt compelled to put the word shall in there.

[Sen. John Benson (Member, Senate Health and Welfare Committee)]: We

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: don't have an answer to that.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: I don't remember it being a conversation on the other side.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: So that wasn't a conversation. Right, anything else?

[Elisa Stolberg (Director for Family and Child Health, Vermont Department of Health)]: Moving down, we're proposing revisions to clarify the RDAC's role in making recommendations to the Department of Health. That's, proposed 18 VSA nine eighty one C3. Our suggested revisions would allow the RDAC to make recommendations beyond the newborn screening program and would clarify that any recommendations from the RDAC would be considered by the Department of Health in the context of existing programs, requirements and processes.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Okay.

[Elisa Stolberg (Director for Family and Child Health, Vermont Department of Health)]: Proposing revisions to clarify the Department of Health's administrative support of our DAC. Our suggested revisions move requirement to maintain a web page from the powers and duties section to the assistance section in the bill. Maintaining a web page that contains notices of upcoming meetings, meeting minutes, public comments and report is a task that is better suited to the Department of Health rather than the And we're also stressing that our role would be limited to basic support of the ARDAC. As we noted in previous testimony, the department can provide the legal, technical and administrative assistance required in the bill, but the assistance would be limited to tasks such as sharing information about open meeting laws, scheduling assistance, maintaining a webpage and providing access to the virtual meeting platform software and physical meeting locations.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: I could see that being a good cutoff point.

[Elisa Stolberg (Director for Family and Child Health, Vermont Department of Health)]: Then just really quickly, we're suggesting revisions would require meetings to be held in accordance with the Vermont's open meeting laws, which is similar to other advisory committees. And that is all. Happy to answer any questions or I'm sure, Sid or Jess as well.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Questions committee. We I, when I pull your recommendation up, I don't get the I don't get the reg. I don't either.

[Unidentified Committee Member]: Yeah.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: So hoping that Katie has I have the. You have. Okay. Good. Need somebody who had it. The other one passed by the house, but I don't have that. You know? When you but you we do have it on our web page. If you refresh, you could get what the Department of Health has got us. Okay. But then you can't see the red.

[Courtney Harness (Blue Cross Blue Shield of Vermont)]: Okay. So So that's the one you can can

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: see it cross out. Not with the red. Not with the red. Okay. Question. Go ahead. Senator Benson.

[Sen. John Benson (Member, Senate Health and Welfare Committee)]: Quick question. Did you discuss any of these proposed changes with the House as they were developing the bill?

[Elisa Stolberg (Director for Family and Child Health, Vermont Department of Health)]: I am going to defer that question to Jessica if she knows.

[Jessica Chittenden (Policy Director, Vermont Department of Health)]: Yeah, Jessica Chittenden, Policy Director at the Department of Health. So, we had worked on some different changes with the house, primarily in that powers and duties section for the advisory council. Originally, that language was shall language, shall conduct these activities, but we felt like it would be better, given that it's a volunteer council without any additional resource allocation, to make that more flexible. So the council itself could participate in these activities, as well as define the activities that were going to work for that group and make the most impact in the state. So that was what we focused on in the house, and so, you know, as we evolved and started thinking about like, okay, if this is the council that we're going to be charged with implementing, we want to make sure that it is as functional as possible. So these changes are really getting to that point, making it functional, making it effective, and coordinating as closely as possible with existing programming at the department on these issues.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: So it becomes, it is an advisory council to the Department of Health regarding rare diseases. That is essentially what we're seeing and creating through the recommendations you're making. All right. Any other questions, committee? Department of Health? So that's good. Thank you. Why don't we have Katie come up? Alicia, thank you. She went.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: She's still here. Thank you

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: very much. Thank you. So you did not have the suggestions from the department when you put together a new addition for a new draft? Correct.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: I just got that language this morning. Katie Okay. McLean, Office of Legislative Council. I do, last time we met, there was some conversation about long COVID. Yes.

[Katie McLean (Office of Legislative Council)]: And so I have put a section, a new section of the bill together. So if you'd like, I could

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: don't we share look share that that at with with you. That then we'll go back and we'll look through what the Department of Health has recommended because I think the bank doesn't. Okay. So, is a strike all

[Katie McLean (Office of Legislative Council)]: amendment. Changes are in yellow. And you'll see there are no changes to the existing language that we have watched.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Is that draft one point two? One point two, yeah. Okay,

[Katie McLean (Office of Legislative Council)]: so here is the new section, Long COVID Resources for Primary Care Providers. On or before 01/01/2027, the Department of Health shall collaborate with the University of Vermont Medical Center, the Vermont Medical Society, and patients with lived experience of long COVID too. First, develop, distribute and support the implementation of evidence informed clinical guidance and training for primary care providers regarding long COVID, including recognition of post exertional malaise, automatic dysfunction, neurocognitive

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: symptoms,

[Katie McLean (Office of Legislative Council)]: and the management of common comorbidities such as cell activation.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Is it automatic or autonomic? Autonomic. Autonomic. That's probably, spelling the correct I think it could be, or

[Katie McLean (Office of Legislative Council)]: it could be. And subdivision two recommends support services for long COVID that include a range of peer and community based programs, such as the University of Vermont Medical Center's long COVID support group, and strategies to support patients who are homebound or at risk of becoming homebound. In subsection B, on or before February 1 of this coming year, the Department of Health, in collaboration with Dale, shall present recommendations to the two policy committees on providing long term disability supports to individuals experiencing long COVID. And that is a new section.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: And it's a whole new area, it sounds like it's general enough and specific enough to get things started. Okay. Yeah. What do the advisory committee Probably, may not, simply because long COVID is an infectious. Oh, not rare, it's not a rare. Well, doesn't matter that from Carol is that the Rare Disease Advisory Council deals with those things that are non infectious, non infectious diseases more than likely. So this is a separate category. And that's okay. Like, remember people that had polio as children had a relapse, like late in life, and it was the result of an infectious disease. It didn't happen to many people. Exactly. But it took a while for expression to find if, yeah, they had symptoms came. Okay. Okay, so now Katie, any questions, concerns about that section, we'll go through it again with Katie.

[Unidentified Committee Member]: All right.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: We should hear from, Department of Health has mentioned it here, so.

[Unidentified Committee Member]: We should hear from

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: the University. UVM has their center. Do

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: you wanna look at the health department's language next?

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: I do. First, Jessica, you have your data analysis.

[Jessica Chittenden (Policy Director, Vermont Department of Health)]: Jessica Department of Health. I just wanted to note that this is the first time we're seeing the language, so I'll need to discuss with my colleagues and let you know if you have any recommendations. Thank

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: you for that opportunity. So, don't we go back through and look at what the Department of Health has brought us, because it shows all of the changes with H46. Okay. But we can't see it.

[Katie McLean (Office of Legislative Council)]: Share my screen. Okay. Here is the Department of Health's document that they sent you today. Their changes are in section two of the bill. Did you take the storage

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: into that?

[Katie McLean (Office of Legislative Council)]: Get them. Sure. Maybe. There we go.

[Unidentified Committee Member]: Perfect. You're done.

[Katie McLean (Office of Legislative Council)]: Is that better? Okay. Thank you. Alright. So a number in the existing language that came over from the house, a number of the appointments are made by the speaker or the pro tem, and this draft changes that. So first, we have the appointment of two individuals living with rare disease, at least one of whom is an older Vermonter. Current language is speaker of the house, and this changes it to the commissioner of health making that appointment. Next is parent or guardian of a person living with a rare disease. Currently, I said for John, currently committee on committees, but this would change it to Commissioner of Health. Next, an academic researcher who conducts rare disease research, Currently speaker of the house, the change is to the commissioner. The next change is a pharmacist practicing in Vermont. Currently, the appointment is by the committee on committees, and this changes it to the Vermont Pharmacy Association.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Subsection

[Katie McLean (Office of Legislative Council)]: J, geneticist or genetic counselor, currently appointed by the committee on committees, this would change it to the Commissioner of Health, and now there's the addition of this catch all language, any other person deemed necessary by the Commissioner of Health. So, it's not limited in size. This opens it to any other individuals. There's the addition of a new subdivision about the length of terms and how somebody could be removed from serving on this council. So, this language is that all council members shall be appointed for staggered five year terms and shall serve at the pleasure of the appointing entity. Vacancies created other than by the expiration of a term shall be filled in the same manner that the initial appointment was made for the unexpired portion of the term. Terms begin on January 1 of the appointment year and run through the end of the, December 31, yeah, run through the end of the calendar year for the last year of the term. The committee members may serve multiple terms consecutively or intermittently. The appointing entity may remove its appointed member for any reason. So there's the language about being able to remove a member.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Do we like the phrase any reason? Why would we have that? Is there a justification for that? I'm looking at Jessica and hoping Elisa is still up there. Why do we have any reason? That makes it pretty arbitrary and uncomfortable for someone serving. Jessica Chippano, Department of Health, I think

[Katie McLean (Office of Legislative Council)]: this is a proposal for you all to, you know, vet, and this was, you know, we looked at language from other committees, and some of them have a lot more detail about the reasons for removal, so I think you can certainly modify that language.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: You know, yeah, for me, we've got some people who are pretty fragile in life, who, if they're lived experience, they don't want to, for any reason, say, Well, I couldn't get to the last three meetings because I'm in a downturn. That would make it hard for you. Alright, we'll go through that when we do markup. I'm thinking about the people who are serving. Yeah.

[Katie McLean (Office of Legislative Council)]: I'm stuck on the sentence vacancies created other than by expiration of the term shall be filled in the same manner that the initial appointment was May 8. And I realize the qualifiers for the unexpired portion of the term, but I think a vacancy, even if it wasn't in the middle of the term, still, the appointment would still be in the manner of the initial appointment. So, I'm wondering if that sentence needs a little bit of work to try to capture what's trying to be done there. I can play with the language if you decide to move forward with that. Subdivision three is changing the shall to the May, so the advisory committee may collaborate with other relevant stakeholders as it deems appropriate, including NORD. And then C is the powers and duties. We have some changes here. It currently reads, Consult with experts on rare diseases, develop policy recommendations, and now the proposal is in consultation with experts on rare diseases, develop and make policy recommendations that identify conditions to, the existing draft in house, identify conditions to recommend as part of the Newborn Screening Advisory Committee program, and the change is to identify for the Department of Health, sorry, I'm kinda trouble tracking this, consider as part of the program screening, guidance, recommendations, To identify conditions for the Department of Health to consider as part of the appropriate screening guidance recommendations. And then removing the subdivision for about maintaining a webpage, although that is added below. So, they're just kind of moving this webpage requirement. This assistance piece, if the goal is to only limit the department's assistance to providing advice on meetings, meeting minutes, I don't know that this does that. I think it should say something like limited to. So, I think this section might need a little bit of work if the goal is to limit the types of

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: services the health department is providing to the council. Okay, I'm not sure if I

[Katie McLean (Office of Legislative Council)]: Just because it's in two separate sentences, second sentence is mostly focused on the webpage. I don't know, the testimony made it seem like the assistance of the health department would

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: be

[Katie McLean (Office of Legislative Council)]: limited to certain tasks. This doesn't read that way. The

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: phrase legal assistance could have implications. I think they're trying to clarify that they're not providing legal assistance to someone outside of the council should they need it in any kind of a civil case or any case before any other agency or anything like that. Right, so I mean, there would be a need

[Katie McLean (Office of Legislative Council)]: for legal assistance for interpreting public meeting, law, like that. What can be aggregated data, those types of questions. So, it's not that technical and legal assistance shouldn't be there, but if the goal is to limit the types of assistance that's being provided, I think there needs to be, we need to be more less than. Limitations spelled out.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Okay. But Jessica has her pink,

[Katie McLean (Office of Legislative Council)]: Thank you. Jessica Chittenden, Department of Health. We did have this conversation in the house, too, and we did ask that it be limited to administrative assistance, given that there is no additional resources for this, and we've also had some challenges, and we can certainly have our general counsel come in and talk more about the legal pieces of it, but it is the general counsel at the Department of Health. The Department of Health is her client, and so these advisory councils are not her clients, and so it makes it very challenging to figure out what that line is, or the legal advice that she can provide.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: But I think as Katie was saying, if there's an interpretation of a statute or a court case that would influence recommendations, then the advisory council would want to have that information. So somehow fine tuning that. Okay.

[Katie McLean (Office of Legislative Council)]: Okay. I think that was it. This is a cross reference to open meeting law, seems like it makes sense. And that's it for those changes.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Okay, so let's do this. Let's keep the Department of Health recommendations in, but let's keep them highlighted so that we can go through it again and get some of our questions answered. Let's keep the long COVID language in. We'll go through that again. Next time we come to this, we'll come back with an eye to mark up. Okay. Slimovil and we'll be hearing from Alyssa and Jessica regarding the yellow section and also some of the questions we've asked regarding clarification, especially on what role the department plays in helping. And then it would be helpful, I think, Carolyn, your perspective of what other states are doing if you have a problem.

[Katie McLean (Office of Legislative Council)]: Now, or in follow-up? I think

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: follow-up is helpful. Yep, certainly.

[Katie McLean (Office of Legislative Council)]: And Katie. Sorry, in the next draft, I'll put the health department language, but it sounded like you didn't want that any reason language.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Any reason

[Katie McLean (Office of Legislative Council)]: should Okay, I remove that for And do you mind if I play with the language a little bit around Not at all.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: And try to tighten that up? Okay. Maybe for cause. I will do that. Clause. We only have

[Katie McLean (Office of Legislative Council)]: We have model legislation as well that has built 25

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: other councils that I've sent to you. You can give me a sense of how. You. My question of you is either now or later in our meeting this morning, S210 is up on the I have it, ready to go. You wanna look at it? It doesn't take more than a minute and I'm thinking maybe we should look at that. So, I'm gonna let folks know who are in the room, who have come to look at age 46, thank you. Thank you for your support of the bill. It's really a very important bill to us and we look forward to the markup on it the next time we take it up. I just, the extent to which you want to be here, healthy. But you can also be up there. And so if you wanna speak to the bill as we go through it, you can also be remote. But you don't have to struggle to get in here. Know that this isn't the most friendly building, especially for someone in a wheelchair. We're getting there. We have a design. We're working on it. But thank you all for being here. Thank you so much, Ann.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: Thank you. Thank you. And

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: we're gonna move on to another bill right now. Very briefly.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: What about pastries, the cassettes on the side before they get swept away?

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Where are they upstairs? They're in the cafeteria.

[Unidentified Committee Member]: Is there still coffee?

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Okay. So we're gonna look at F 210. What okay.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: And then we're gonna move on. We'll take a

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: mini break in about in and out of the. Get didn't even sound good. I know I'm really dense at 98. Okay. Okay.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: Alright. 02:10.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: That's 02:10 with it in the calendar.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: Okay. This is the autopsy reports bill that you worked on earlier this session. The first change in this bill, if you remember, can

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: you close the door please? We're still working here.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: If I could just remind you a little bit about what this is about. Hey Mike. Set up a court process by which somebody who could not otherwise obtain a autopsy report under HIPAA, that they could petition the court to obtain an autopsy report. One of the changes is in this intro paragraph 2A. There was language that allowed the state's attorneys that the superior court could only provide the autopsy report if the autopsy, if the state's attorney agreed. It sort of what the House Human Services said, it sort of gave them veto power to overrule the court. So, removed that phrase and built the concept in to the factors that the judge would be weighing. So this subdivision B, to refresh your memory, is the different factors that the court would be reviewing. And we have this new Roman numeral six, whether the disclosure interferes with an ongoing criminal investigation, and that's meant to speak to the concerns that originally led the state's attorney asking for that authority, for lack of a better phrase. And then this subdivision C is new, that nothing in Subdivision two shall prohibit a petitioner from refiling a petition for a copy of an autopsy report upon a material change in information. The conversation upstairs around that was maybe the initial petitioner came, well, there was an ongoing criminal investigation and that has been concluded. Originally the court rejected the petition to grant access to the autopsy report, but there's a material change in circumstances and information, then it would be appropriate for the petitioner to refile and try to get that autopsy report if they continue to want to seek it. So those are the changes from the house. So not not hugely significant, but I think helpful.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: I think the thinking that the state's attorneys would have power of the courts, what we intended there. So, what I'm looking for is, it's off notice and it'll be for our approval. We could either ask for confidence committee, we could send a further proposal of amendment, or we could be satisfied with what the House has sent and say, Doug. Melissa, are you gonna post it for us, the how's the new I don't see it on her web page. You're on It's on the calendar. It's just

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: there's it

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: on the calendar.

[Carolyn Sheridan (Associate Director of State Policy, NORD)]: If you go to the website and type in s two ten on that bar at the top, you can get that. Oh, know. Oh, it's not on the website. Okay.

[Unidentified Committee Member]: I can I can find it? I didn't find it. Yeah.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Just didn't have the song that I just like to do. Okay.

[Unidentified Committee Member]: Let's Oh, it. Okay. Go ahead and post it. I'm fine with good language.

[Sen. John Benson (Member, Senate Health and Welfare Committee)]: I didn't find anything objectionable to

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: the client. Okay, so I'll let the secretary know and I'll take it through and we will ask for concurrence with the House of Proposal November. Those of you who would like to have a quick break to go ahead, we're going to move on 06:11 because we have two really heavy lift bills right now. And Theresa, you might wanna follow-up with you. That's a if I've ever heard. Alright. So we're gonna move our dog into 06:11, and we've got testimony She said you made one. Yeah. No. No. Not yet. Did she grab something? All right. So Courtney, because I and we're we're doing a little survey about that chair, and whether it's better than the previous chair. Smaller. I can if

[Courtney Harness (Blue Cross Blue Shield of Vermont)]: I were sitting behind me, I'd be happier. Okay. I'm not a good survey respondent because I exceed the average.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: It's a good no, we're doing a full spectrum of the bell curve. I like it. Okay. Yeah. All right, thank you. And thank you for being here. So we're going to listen to your testimony on 06/11. We did go through it with ledge counsel, and I don't see any written study here from you yet.

[Courtney Harness (Blue Cross Blue Shield of Vermont)]: Not yet. And thanks for having us. For the record, Courtney Harness, Blue Cross and Blue Shield of Vermont. I am joined on Zoom by my colleague, Ivy. Many of you probably know her predecessor, Nancy Hogue, who has retired. Stephanie has assumed the role of director of pharmacy for us. So I'll just kind of open us up and then send it over to Stephanie for all of the details. You know, I think importantly for us, and what Stephanie will speak to in some of the reporting requirements, and should probably say relative to 01/1993, we're fine doing the reporting. We just haven't seen many outcomes from it. And then relative to some of the amendments and language that we've seen around HIV and prepping, Stephanie will have some more details about that. So I think Stephanie is available, so I'd love for her to dive in a little deeper for you all.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Thank you. Go right ahead, Schmitz. Good

[Stephanie Ivey (Director of Pharmacy, Blue Cross Blue Shield of Vermont)]: morning. I'm Stephanie Ivey, and for the record, I am the director of pharmacy here at Blue Cross Blue Shield of Vermont, as Courtney mentioned. I just officially took this position last week. And so this is my first time here testifying. So glad to be here. I just wanted to talk currently what we kind of do for active cost management, we work through our PBM partnership with Optum, we do formulary optimization, and we do try to choose lower cost alternatives. Just as an example of that, in January 2025, we switched from Humira to one

[Unidentified Committee Member]: of its

[Stephanie Ivey (Director of Pharmacy, Blue Cross Blue Shield of Vermont)]: biosimilars, adalimumab, and we had roughly $9,000,000 in savings through 2025. We also have partnerships with Civica script, and they're advancing lower cost generics. So we participate with that. As far as transparency and reporting relates to Act 193, we do work with our PBM twice yearly to report on that. And that includes the detailed analysis of our high cost drugs, our pricing trends and other market dynamics. But the broader reality of that is we're not seeing a reduction in the manufacturer pricing, despite this scrutiny. So a good example, as I mentioned, you know, we chose the biosimilar for Humira, but Humira actually appeared on our reporting in 2023, with a 60% net increase, and then again, in 2024, with a 57% increase. So I think, know, the takeaway there is that the primary cost drivers are really upstream, it limits our downstream flexibility. And with one less entity reporting out on these high cost drugs, we're just wondering if our information is going to be actionable here. And that kind of, you know, wraps up my comments on that section. So I was gonna move on to HIV. Stephanie,

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: I'm gonna ask, because you're moving along at a pace here and we can't take notes effectively, so will you please send your comments in to Calista? Thank you. Okay, great. Thank you.

[Stephanie Ivey (Director of Pharmacy, Blue Cross Blue Shield of Vermont)]: Okay, so I can move on to the amendment with the HIV coverage approach. So for PrEP and PEP, we have no prior authorization or step therapy requirements. Patients would have immediate access to these medications. We also have plans with wellness riders that will bypass deductible for all HIV medications, they still will be responsible for copay if there is one assigned, but we'll bypass that deductible. I think that the core operational constraints that we see in this amendment is that pharmacy claims do not include diagnosis codes. So we're not able to distinguish between PrEP, PEP or treatment with these medications. So the implication here is that we cannot apply different cost sharing rules based on the use or diagnosis, because we're not getting that in the claim information. So our concerns with this amendment would be it eliminates the cost sharing, and then restricts any future utilization management. So while we don't currently require prior authorization or step therapy, this would limit any future utilization management we could apply. And it really applies broadly to our high cost drugs. So some non preferred drugs, for example, Descovy can be used for PrEP or treatment, we have it as a tier three non preferred, because there are generic alternatives that are just as effective. And this really would apply for us to both treatment and prevention, since we're not able to delineate. So really, the risks here are expanded costs without targeting. And we would need to open this up to the entire class to be in compliance. We have very good coverage in this drug class. And while this particular class may not have significant premium impacts, we are concerned that this does set a precedent, and that in future sessions, we may see other disease states being targeted for zero cost share. And over time, the accumulation of those disease states or rules around zero cost share could certainly, and probably most certainly, would increase premiums that would then become more impactful for the cost of Vermonters.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Is that it?

[Stephanie Ivey (Director of Pharmacy, Blue Cross Blue Shield of Vermont)]: That's it.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Okay. Thank you. Would be really helpful to have your testimony sent in so we can look at it. This is our first look at the prep proposal. Thank you for doing that. Thank

[Unidentified Committee Member]: you very much.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Overall, so is there any separation between PrEP and PEP within Blue Cross and Blue Shield?

[Stephanie Ivey (Director of Pharmacy, Blue Cross Blue Shield of Vermont)]: We do not have segregation. There are some overlapping drugs there as well. So all of these drugs can be used, you know, a few of them are used just for PrEP and treatment, a few of them would be just PEP and treatment, but there are a few that crossover with PrEP and PEP.

[Sen. John Benson (Member, Senate Health and Welfare Committee)]: Okay,

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: thank you. Any questions, committee? Congratulations on your new position. Is your first opportunity to visit with us and we appreciate your being here. Thank you.

[Stephanie Ivey (Director of Pharmacy, Blue Cross Blue Shield of Vermont)]: Thank you so much.

[Courtney Harness (Blue Cross Blue Shield of Vermont)]: We'll send that in.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Please do. Yeah, that'd be good. Thank you all. And we have Charles Becker here from Vermont Legal Aid, and you did send us your phone,

[Courtney Harness (Blue Cross Blue Shield of Vermont)]: and so it's great.

[Charles Becker (Staff Attorney, Office of the Health Care Advocate, Vermont Legal Aid)]: I did. Have Jerry. Yes. Thank you. Good morning. Good morning. Thank you. It's my first time in this year. Great to to see you.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: You don't know everyone. I

[Charles Becker (Staff Attorney, Office of the Health Care Advocate, Vermont Legal Aid)]: do not.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: No. Very briefly, let's do it again, senator Morley. John Morley from Orleans.

[Charles Becker (Staff Attorney, Office of the Health Care Advocate, Vermont Legal Aid)]: Nice to meet you. John from the Orange District. Nice to meet you.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Oh, Ginny Lyons.

[Charles Becker (Staff Attorney, Office of the Health Care Advocate, Vermont Legal Aid)]: Of course, yes.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Ann Cummings.

[Charles Becker (Staff Attorney, Office of the Health Care Advocate, Vermont Legal Aid)]: Thank you so much.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: And then our

[Courtney Harness (Blue Cross Blue Shield of Vermont)]: Yes. We're Nice collaborative

[Charles Becker (Staff Attorney, Office of the Health Care Advocate, Vermont Legal Aid)]: to Nice you. Nice to see you again. So good morning, Madam Chair and members of the committee. For the record, my name is Charles Becker. I'm a staff attorney with the Office of the Healthcare Advocate. Thank you for inviting me to testify today about PrEP and PEP. The HCA strongly supports the twin aims of the proposed amendments, protecting PrEP and PEP as preventive care under Vermont law and expanding access to PrEP and PEP by authorizing pharmacists to prescribe them. Before turning to the specific language you've been presented with, I want to briefly say why this matters. I'll say this both as an advocate and personally. As a gay man who remembers the 1980s and who came of age in the 1990s and 2000s, I remember very clearly what an HIV and AIDS diagnosis once meant. I remember when a diagnosis was, for many people, effectively a death sentence. I remember the fear and the stigma, especially for a community that was already marginalized. Since then, there had been extraordinary breakthroughs. HIV treatment transformed the disease from a fatal diagnosis into a manageable chronic condition. We now know that when a person living with HIV is on effective treatment and undetectable, they cannot transmit HIV sexually, and we also know that we now have highly effective tools to prevent infection in the first place. PrEP prevents HIV before exposure. PEP prevents HIV after potential exposure if started within seventy two hours. These are safe, effective, well established interventions. Because of advances like these, ending the HIV epidemic is no longer an abstract aspiration. It is a realistic public health goal, but it depends on access. People need to be able to get these medications easily, quickly, and without unnecessary barriers. That is why this proposal matters. On the coverage issue, the law is relatively straightforward from our perspective. Under the Affordable Care Act, health plans must cover certain preventative services without cost sharing, including the A and B recommendations of the United States Preventive Services Task Force. PrEP fits within that framework. It is a USPSTFA recommended preventive service for people at increased risk of acquiring HIV, and it is therefore subject to the federal zero cost share requirement. PEP is a little different. It is a well established and effective HIV intervention, but it is used after potential exposure and on an emergency basis, so it doesn't fit as neatly within the federal preventive services mandate, and that is why this proposal before you is important. Vermont law could go just a small step further than federal law. By expressly protecting both PREV and PEP in state law without cost sharing, the legislature can provide clear and durable protection for both forms of HIV prevention. The HCA supports that added protection. The second major piece of the proposal is pharmacist prescribing authority. That also makes good sense. Pharmacists are among the most accessible healthcare providers in our communities. They are already highly trained medication experts, and other states have already authorized pharmacists to prescribe PrEP and PEP. This is especially important for PAP, where timing is critical and delays can make the intervention ineffective. This proposal is not about replacing primary care, it is about creating another access point for effective preventive care, and I would make three brief points about the language that you've been presented with. First, the language appears to do the core work of protecting PrEP and PEP coverage without cost sharing quite well, and the HCA supports that language. Second, if the committee also intends to authorize pharmacists to prescribe PrEP and PEP, that portion of the language may need additional work. The Office of Professional Regulation, I see you have someone here to testify from them today, would likely have useful input about where and how that authority would be placed into the Vermont statutes. Third, and importantly, if pharmacists are going to provide these services, they need to be paid for doing so. Other states have learned that granting authority without addressing reimbursement can significantly undermine implementation. If pharmacists are authorized to provide PrEP and PEP, there is no workable reimbursement pathway for their clinical services, then the access gains this committee is trying to achieve may not be fully realized. So in sum, the ACA supports the proposal. We support clearly protecting PrEP and PEP coverage without cost sharing, and we support expanding access through pharmacist prescribing authority. This is a targeted, practical, high impact public health reform that can lower barriers to care and move Vermont closer to the goal of ending the HIV epidemic. Thank you for your time and happy to take any questions you might have.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Thank you. So the one area that you said language needs to be improved, that

[Courtney Harness (Blue Cross Blue Shield of Vermont)]: reimbursement for the pharmacists. The reimbursement and also whether this

[Sen. John Benson (Member, Senate Health and Welfare Committee)]: is addressed as a state, where this fits into the clinical pharmacy section of Title 26. There's already a section on Title 26 on clinical pharmacy. This would be a clinical pharmacy service. I think it probably needs to be added into that section somewhere, and then also the reimbursement piece as well. So right now I think it's just one small little paragraph at the very end of the amendment. I think it just needs a little bit more attention than that.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Well, it also has budgetary implications if it's extended right now. There's a timing issue there too with the '27 budget, '28 Okay. Yeah.

[Courtney Harness (Blue Cross Blue Shield of Vermont)]: Maybe, yes. Okay.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Thank you. Question, Senator? No, I'm trying to figure out the fiscal impact.

[Elisa Stolberg (Director for Family and Child Health, Vermont Department of Health)]: On the other hand,

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: the PBMs and all their online pharmacies have done everything they possibly can to put local pharmacies out of business. And I would like to be able to help the local pharmacist because the PBM isn't there in an emergency. Not at all right now. The postal service isn't there.

[Unidentified Committee Member]: Themselves.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: It'd be how we get.

[Sen. John Benson (Member, Senate Health and Welfare Committee)]: Okay, I could just for second. Yeah. I mean, I think this would be a proposal that I think many independent local pharmacists would be attracted by, the ability to be able to offer these services potentially to their customers and to be able to dispense those drugs to their customers. I see this as being something that would happen more in an independent pharmacy than in one of the big changes. Oh, yes. Yeah.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Thank you. Thanks for putting this together. You always bring in expertise from your testimony. Thanks so much. Appreciate it. And Sebastian Arquango is here from DFR. We did introduce everyone around, so I'm hoping that suffices. Speaking of PBMs, this is the man with the whiteboard. White fluid.

[Greg Leggo (Department of Financial Regulation)]: Yes. Unfortunately, I've I've retired the whiteboard because it doesn't

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: it's great in person,

[Greg Leggo (Department of Financial Regulation)]: but the feedback I've gotten is that people looking at the Zoom after the fact can't see it. It's reversed. So I've I've made the whole presentation into a PDF that I've I've shared and and part of it in House Healthcare. Cool. So it's Scott. Greg Leggo for the Department of Financial Regulation, and I'll be speaking to the language in the amendment as proposed by Laura Byrne from the HIV HCV Resource Center. And I just wanted to state at the outset that the department supports commercial insurance coverage of HIV preventative services. In terms of the specific language that's being proposed, there is there are a couple of things that we wanted to note. First, the proposal has a definition for health insurance plan that references 18 BSA section ninety four zero two. The department's preference would be for definitions like that to reference title eight chapter one zero seven, where we recently you know, last year, we enacted act 11 that reorganized that chapter and also introduced consistent definitions for things like health insurance plan. So our preference would be to reference those definitions wherever possible. Secondly, as Charles alluded to, the Affordable Care Act mandates coverage of preventative services, and HIV PrEP is one of those services that has an a rating from the preventative services task force. However, HUD or HUSK exposure prophylaxis and supportive health services, which are also referenced in Ms. Burns' proposal, do not have an a recommendation from the task force. They are currently covered by our health insurers, but the concern that we have that we wanted to raise with this committee is that in the future, the federal government could require us to defray the cost of services that we require insurers to cover. And the reason I'm bringing this up is that in the most recent payment notice, which is the rule that the federal government proposes every year that governs the operation of ACA health insurance exchanges, The government has said that they are considering, starting next year, requiring states that enacted new health insurance mandates after 12/31/2011 to defray, I e, pay for the cost of those mandates regardless of whether that coverage was in the EHB benchmark, which is the the plan that sets the standard for which services are supposed to be covered as essential health benefits under the ACA. So if the notice is finalized as proposed, there is a risk that the state will have to defray the cost of this, as well as any other mandates that we enacted after 2011?

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: We didn't listen to those. Yes. We knew. We always love good news. Thank you. Questions for Sebastian. So

[Greg Leggo (Department of Financial Regulation)]: cool. Alright. Thank you.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Will you send us your testimony in writing?

[Greg Leggo (Department of Financial Regulation)]: Yes. I'll I'll reduce my testimony to writing and get a list of mandates that we have enacted in the last sixteen years.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Okay. She's a real good. Nothing like being on a solid ground. Keep putting grains of sand on there.

[Unidentified Committee Member]: So,

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Jen, thank you for being here. Thanks for having me.

[Unidentified Committee Member]: Good morning, Jennifer Gulick, Director of the Office of Professional Regulation. How are

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: you all? Good. Nice to meet So

[Jennifer (Jen) Gulick (Director, Office of Professional Regulation)]: just wanna start off by saying we've been late to this conversation. We weren't engaged in this conversation around the limited portion of the proposed amendment to six eleven that really concerns the Office of Professional Regulation. We're here today to maybe express some concern about one little portion of this proposed amendment. Last week, we were made aware of the proposal to amend H611 by HIV HCV Resource Center, and, and the the small revision that I'm referring to relates to the, addition of HIV Pep and PrEP to the authority of pharmacists to prescribe. We have not been really engaged on this so far, and so we're kind of playing a little bit of catch up. You'll see at the end of the proposed amendment, subsection D says, Notwithstanding any general or special law to the contrary, a licensed pharmacist shall be authorized to prescribe, dispense, or administer HIV prevention drugs. The department, in consultation with the Board of Registration in Pharmacy, shall regulations implementing this provision and establishing the terms and conditions of such authority. OPR regulates the practice of pharmacy, and there is a section of the pharmacy statutes right now that allows pharmacists to prescribe very particular drugs under very particular circumstances, There is that in existence with respect to other drugs that pharmacists can prescribe. We do support the concept of pharmacists having the authorization to support these important drugs, and we absolutely understand the need for access to these medications, particularly for the post exposure prophylaxis, which you have a seventy two hour window, is my understanding, to get this treatment. We do understand the need the potential benefit of having pharmacists push out these beds. We do have a concern about moving forward with subsection D at this time, so late in the session. We have not had an opportunity to meaningfully engage with our stakeholders regarding this expansion for pharmacists to prescribe these meds. Whenever we are working on these pharmacy changes, where something is added to the list of clinical pharmacy prescribing that pharmacists can do. We work closely with the Board of Pharmacy. They meet at the end of each month. We haven't had a conversation about this because we didn't know that this was coming on as well. Vermont Medical Society and the Vermont Department of Health, among others, to sort through policy considerations and process, as well as to draft consensus language that can go in Title 26, which is where there are profession specific statutes for all of OPR's regulated professions. So while we support the concept of this expansion, we haven't had that opportunity to go through this process with our stakeholders, and we know that changes would have to be made to the Title 26 statutes. Thank you for that. Would that be a scope expansion, or is that something different? Pharmacists already do prescribe, so Yeah, just add it again. It's just adding particular medications that have longer courses of treatment, shorter courses of treatments, and may have some complexity. We did reach out to both BDH and VMS, and we know VMS has concerns about this, and we just haven't had an opportunity to engage and try to sort through that. So we also understand from I wasn't in the room and able to hear the testimony that came before me today, but I did watch Laura Fern's testimony from last week. We understand that there's a timing issue to ensure that coverage for these life saving drugs remain covered, and we don't want to hold that piece of it up. We're hoping that subsection D, the very end, can be removed for now just to allow us the time to engage with our stakeholders, and potentially that's something we can move forward with next session. In my communications with BDH, I believe they also support that approach, but that's what we would have asked to have that information. Just a general comment. I've lived in four different countries, well, for four years in three different countries in Europe, and it is not necessarily apropos of this, but their pharmacies have so much more leeway and prescribing When you're living there and you don't have necessarily a primary care provider, your pharmacy is where you go for care a lot of the time. Yeah, and even here where people do have primary care providers, it can take a while to get into your doctor's office, but you can get to your pharmacy pretty quick. We totally appreciate that and understand that. We just have a process that we for us to come in come in with proposed language to Title 26 without engaging with the Board of Pharmacy and working with those stakeholders, that's just not something we're prepared to do at this moment. Yes. Thank you. We'll consider the recommendation to take it out,

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: but we might want to ask you to bring back information. Happy

[Unidentified Committee Member]: to verify any information that you all talk about.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Thank you. Thank you so much. I will see you again. Yes, you're welcome. And anything you can send in writing that would help us in our decision making. Okay, thank Okay, so we're gonna move to Lauren Bode representing pharmacist associate. Welcome on screen. All right. Well, good morning. So, Lauren, thanks for being here. And you've heard probably some of the discussion that we've had already regarding PrEP and PEP and the role that pharmacists would pay, so it plays. Why don't you just go right ahead with your testimony? And I will ask you to please send it in at some point.

[Lauren Bode (Legislative Liaison, Vermont Pharmacists Association)]: Thank you, Chair. Sure. So I'm Lauren Bode. I'm the legislative liaison for the Vermont Pharmacists Association, and I appreciate the opportunity to talk on this today. The reason you don't have my testimony before you is my intent today was merely to express from from VPA our support for this, and then to respond to questions that may have come up in the course of testimony. So, having heard some of those questions, I will absolutely provide some documents to the committee for their review. So, in brief, I'll say that I'll echo the statements of our healthcare advocate office in saying that this does make sense. It makes sense to be able to provide access. It makes sense to be able to ensure that patients have easy and continuous access to these very important preventative services. I'll speak briefly to the role that pharmacists can play. We've already highlighted the expertise in medications. We've highlighted the role that pharmacists do currently play in the primary care infrastructure in the state, in particular given our current lack of primary care access. Also that they are currently prescribers. This has been a part of our practice for many years at this point. To the point of whether to implement this provision now versus later, I do understand the idea of wanting to be thorough and deliberative in making these determinations. I would propose rather than waiting until the next session that we instead continue on with the intent to include pharmacist provision of PEP and PrEP, and instead discuss what an appropriate implementation timeline for the promulgation of those regulations would be. This actually would be consistent with the process we followed when we were talking about a different set of pharmacist prescribing regulation, where we enumerated in statute that this was going to be done, but then provided an appropriate length of time for the Department of Pharmacy, for VDH, and for other interested parties to be able to come together and discuss what those particular regulations would be. I think in this case, this would be a particularly appropriate path to take due to the high impact nature of HIV and the time sensitive nature of it. And also because we have so much knowledge about how to do this, given the fact that the majority of states do have this provision already in place. We are not needing to create this completely de novo. We have the experience of literally half the country that we can rely on to ensure that we can promulgate these regulations in a way would be effective to deliver this important care. So that's my thoughts for today but I certainly welcome any questions that anyone has.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Thank you. If you could get us your comments in writing and we'll have them up under the bill that would be very helpful. I mean at this point we're just gathering information and then we'll move on to markup very soon. And I know questions to be for Lauren.

[Lauren Bode (Legislative Liaison, Vermont Pharmacists Association)]: I just recalled one other element that came

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: Go ahead.

[Lauren Bode (Legislative Liaison, Vermont Pharmacists Association)]: There was a question about fiscal impact. I was able to obtain basically the fiscal note from Colorado when they implemented a similar provision and they actually estimated the fiscal impact as zero. So while we should absolutely consider this, I do not think we should consider this a barrier. And I will also send that.

[Sen. Virginia "Ginny" Lyons (Chair, Senate Health and Welfare Committee)]: We'll have to sort that one out with our joint fiscal person, but thank you for that. Okay, so thank you Lauren, and we'll look for your written testimony. And then I do know that there was an interest in looking at psilocybin, there was a proposal around that, and I'm gonna suggest that we hold that one until we come back to the bill because we have a huge bill in front of us next, and the committee needs a seven minute break. So we're going to take a seven minute break right now, go up live, and then we'll come back to H 9 thirty, 80. We already have people on the room to