House Public and Community Health Committee, February 3, 2026 Video: https://vimeo.com/1161436776 (a timestamp t plays at https://vimeo.com/1161436776#t=s) Page: https://georgiacommons.org/meetings/2026-02-03/house-public-and-community-health This is a machine transcript of the General Assembly's video, made by a speech-recognition model. It is not an official record and can mishear words, names, and numbers. Speakers are not identified. The video is the record: every timestamp links to the moment it plays. [0:25:21] Okay. Good afternoon, everybody. I'm sorry for the delay. Um, this is our first meeting of this session, so welcome back everybody to the committee. Uh, I think I have one of the best committees in the house, and I appreciate your attendance and concern about these bills. Um, and we have a new, uh, scribbler, a legal scribbler. That's not exactly the correct way. We have a new attorney that helps us with our bills and our committee meetings. [0:25:52] Kristen, can you stand up so people can see you? [0:25:54] Sure. [0:25:55] How about that? Welcome. Welcome. And Addie is our intern. She's a Georgia Tech graduate. Go Georgia Tech. There we go. There we go. Come on. We're for Georgia, too. It's just lately I've been getting... My interns the past several years have all been techies, so, uh, we're glad to have Addie with us, too. So, and I also have a new administrative assistant. Uh, James, do you wanna stand up? [0:26:27] Okay, thank you. And James is a big addition to the office and helping us get organized, but it has been a bit, a little bit of a turnover. Um, and we're gonna, uh, do things a little differently. I have people that have to make it to other meetings, uh, so I will appreciate the committee hanging with us. We have people that wanna make presentations, uh, but I'm gonna go ahead and, uh, start with House Bi- Bill 657, and I believe Representative Hogan is already here. [0:26:58] There we go. [0:27:11] Thank you, Madam Chair and members of the committee. The bill that I have for you today is one that, that you passed out unanimously last session. It's House Bill 560, 5, 657, LC520794, and it's in the exact same version that it was last year. We made no changes to it in the interim. Well, we know that substance addiction is an eco- epidemic in Georgia and across the country, but there's hope in Georgia because the recovery community here in our state is active and strong. [0:27:50] In fact, Georgia has the second-highest number of recovery co- recovery... I'm sorry, RCOs. I'm just gonna say that. RCOs in the nation, second only to Texas. So Madam Chair, members of the committee, the reason why we need this bill and why it's so important is because we need consistency of care, um, across the state. And what I've learned as I've been working, um, with members of this community on this legislation is that every RCO across the state is unique and has its own way of operating, and that's a good thing because every community is different. [0:28:34] And so the people that are working at that RCO know their community best. So the goal here is not to take that individuality away from those RCOs. It is just to make sure that, uh, the people that go there for help and support are receiving consistency of care and quality support. Currently, there is no oversight or o- organizing body who certifies that those who provide services in the RCOs are properly trained, and so that is our goal here. [0:29:07] What the bill does is define certified peer specialists within the code, and this is all new language. This is currently not in the code. So it would define what a certified peer specialist is. It requires that they be trained by an entity approved by DBHDD, and it sets out the requirements for RCOs. Um, it is not a department bill, but I did, uh, speak with the commissioner of DBHDD, and he was in agreement with it and, and did read the language and approved it last year. [0:29:41] And as I said, we've made no changes. So Madam Chair, that, that is the bill, and I would be happy to answer any questions if the committee has any. [0:29:49] Okay, questions from the committee. Okay, here we go. Okay, uh, Representative Washburn. [0:29:58] Thank you, Madam Chair. Did I understand correctly that this bill as it is was passed by the committee last year, and did you say it was a unanimous vote? [0:30:09] I believe it was a unanimous vote last year. [0:30:11] Okay. [0:30:12] It was, yes, sir. That's right. [0:30:12] But no changes- [0:30:13] No changes [0:30:13] ... no changes have been made to it since then? [0:30:15] None at all. [0:30:16] Thank you. [0:30:17] Mm-hmm. [0:30:18] Okay. Representative Reese. [0:30:21] Thank you, Madam Chair. Um, representative, chairwoman, thank you for this bill. And I just wanna add that I was, uh, reminded by two of my colleagues, um, Buckner and Willis, that they're supporting this bill as well. And we did support this overwhelmingly last session. And at the appropriate time, Madam Chair, we can move this bill. [0:30:40] At the appropriate time. Who have I got? Uh, Representative Barnes. Uh, wait a minute. I think somebody has an announcement to make about Representative Barnes. [0:30:53] While we're on Representative Barnes, AKA Dr. Barnes, she just got her doctorate in public health over the summer, so congratulations. [0:31:07] Thank you. [0:31:07] Thank you, chair lady. [0:31:08] You're welcome. [0:31:08] Thank you, Dr. Au. Uh, what- quite a feat, uh, to work through, uh, the PhD level, and we give you our hearty, hearty congratulations on that, so. [0:31:19] I appreciate it. That means a lot. Thank you, everyone. [0:31:21] Okay. Continue. [0:31:23] And my doctorate in public health question is pretty much, um, are these peer, peer specialists able to go out with, like, um, first responders? [0:31:34] That's a good question. I do not know the answer to that. We're not looking to change how they currently operate. We just wanna make sure they're certified. I think there might be someone speaking to the bill here in just a moment that could answer that question for you. [0:31:47] Thank you. [0:31:48] I do know that the care that is provided at RCOs is non-clinical, so I d- mm, don't know, but that is a very good question and I look forward to finding out that answer. Mm-hmm. [0:32:01] All right, thanks. [0:32:02] Okay. And we got one more? [0:32:05] I have two. [0:32:05] Oh, okay. He's, oh, okay, Representative Cheokas, you dropped off. Okay. Uh, there's no more questions. We do have, uh, several people that have signed up for it, um, on it, and we'll start with, uh, Rep, um, Jeff Breedlove. [0:32:26] Thank you. If it please the committee, I'm Jeff Breedlove with the Georgia Council for Recovery, and a person in long-term recovery. And I'm with the Georgia Council for Recovery to support and, and thank Senator Hagan for this important, uh, legislation. I'll be brief because I, I want to say that we have some of our local recovery community executive directors from your districts here today, and I want them to just briefly introduce themselves. Some of them traveled a great distance to be here. Just wanna thank you for your consideration of this bill, and to that great question, uh, Brian Kite will respond about could, uh, CARES be, uh, uh, doing that type of ride-along work. [0:33:04] I will say that we, we also have been in touch with Commissioner Tanner and DBHDD, and thank you for their support and their leadership on this. Uh, we hope this is a completely unanimous bipartisan, uh, effort. We appreciate your consideration therefore. [0:33:21] Questions? Seeing none. Brian Kite. Thank you, Mr. Breedlove. [0:33:28] Thank you, Chair Lady, thank you, Committee, and, uh, thank you, Representative Hagan, for, uh, pushing forth this legislation. Uh, my name is Brian Kite. I am the RCO Development Program Manager for the Georgia Council for Recovery. We work in partnership with DBHDD, uh, on the development and support and technical assistance for the recovery community organizations around the State of Georgia. Um, as was stated, RCOs are nonprofit entities that are peer-run, so providing non-clinical services and peer support services can look like a miri- myriad of different things. [0:34:03] It could be a one-on-one peer coaching. It could be, uh, providing space for support groups, having a safe place to come, helping people with documentation, helping people get, uh, uh... Eliminating any other barriers, like housing or transportation that might exist, or, uh, meeting people in crisis situations. Could be in emergency departments. Uh, there are a number of RCOs, uh, including us, that are in emergency departments, uh, meeting people, uh, post-overdose or alcohol-related issues. [0:34:35] Um, also there are some that are riding along with law enforcement or emergency response services in different communities. Uh, one specifically, uh, Your Haven in, um, uh, Buchanan, Georgia, in Haralson County. Yes, um, they, they have a, a co-responder team and, uh, a recent expansion of that program with a CDC-funded grant. Uh, so I'm here to speak as a person in long-term recovery, uh, myself, uh, over 11 years in, in recovery as of last Sunday. [0:35:11] Yeah. [0:35:15] Thank you, but, uh, recovery is much more than just not using alcohol or drugs. It has enabled me to be a better father, a better son, family member, and community member as I get to work with amazing people all over the state that help meet people where they're at to find the resources that they need to enter into recovery. And each RCO is, is different, it's unique to their community, and they're going to work to abridge the gaps that exist, but it is important as this network continues to grow. Um, when I started in 2018, there was the first allocation of state funding, uh, to what the state calls addiction recovery support centers, or what I call state-funded RCOs, and that number has continued to grow. [0:35:58] Uh, we now actually, I do believe, are higher than the number in Texas, and we have 59 in some stage of development. Yes, and, uh, and many of those are funded through state allocation, some opioid abatement dollars, and they continue to grow. But what is really important is that we uphold the integrity of the network of these recovery community organizations by defining in statute what they are. And so we thank you for pushing forth this legislation, and, um, I submit to any questions at this time. [0:36:30] Any questions for the presenter? Thank you for your years in recovery and, uh, for your, um, ad for, what are they called? Uh- [0:36:41] Sponsorship [0:36:42] ... you did a good ad for your, the companies you work with. [0:36:45] Thank you. Thank you. [0:36:45] I'm sure they want that. Uh, Alex- Alexius Jones, Alex Jones. Alexius. [0:36:51] Excuse me. [0:36:54] Short and sweet. [0:36:56] Yes, ma'am. [0:36:58] Short and sweet. [0:36:58] Short and sweet. If it please the committee, my name is Alexius Jones with, uh, Rise in the City of Atlanta, Fulton County. I'm also a person in long-term recovery celebrating 30 years in recovery. Thank you. I have the privilege of serving as founder and executive director of Rise, and at Rise, we have found a new paradigm. We sing through our hardest times, we dance to celebrate our recovery, and take up our paintbrushes and we paint our stories through every color of the rainbow. [0:37:29] I'm here today to say thank you for the support to the General Assembly- which gives recovery community, uh, which gives recovery community organizations across Georgia. Most people understand when a loved one goes to treatment, they get the general idea. Most people do not appreciate the vital role that recovery community organizations play in the medical construct of healing from addiction. For instance, let's say a person is in treatment for 24 days, 60 days, or 90 days, or even 120 days. [0:38:02] In that environment, they cut off the real world, and in that environment, they are, they are safe. Um, they are safe, and they are with a lot of accountability. But what happens after the day they depart from isolation and s- safety of the treatment center? The real world happens. That is when RCOs come into play. A person can continue their healing by being in the community. RCOs have a vital role a- as a part of the process for people to find and sustain long-term recovery from addiction. [0:38:37] And I can honestly say that there are a lot of folks that come to Rise from recovery, uh, from addiction treatment programs, even out of prison. And as a result of becoming a part of our community, they find the skills that they need to be successful and to reach their fullest potential. Thank you. [0:38:56] Thank you very much, and for your recovery, and for coming to speak today. I know it's a lot of trouble to make your way down here, to, to all of you, uh, to the Capitol. Parking's at a premium when you're not one of us- ... uh, that have a parking place, which we pay for. They're not free. Um, but, uh, we thank you for making the effort. Um, I... [0:39:19] Ma- Natalie? Mad- [0:39:21] Maddie [0:39:21] ... Maddie Baker Belcher. Somebody writes like I do- ... which is unreadable. My husband was a physician. He printed, and I write like a physician. Ah, here she comes. Okay. [0:39:37] Hello, everybody. My name's Madison Baker. Um, if it please the committee, um, my name's Madison Baker, and I'm with Living Proof Recovery in Rome and Floyd County. I'm also a person in long-term recovery from substance use. I have the pr- privilege of serving as the interim executive director at Living Proof Recovery, and I'm here today to say thank you for the continued support the General Assembly gives to recovery community organizations across Georgia. Every day, our organization serves people in very early recovery, sometimes on day one of their recovery journey. [0:40:13] These are moments of extreme vulnerability. At that stage, people need to know that the place they are walking into is legitimate, safe, and accountable. I know firsthand how critical it is to have a recovery space that is trustworthy during those early moments, because my own recovery depended on being met with safety, structure, and dignity. This legislation helps ensure that recovery community organizations meet clear standards and operate with integrity. It does not create new costs for taxpayers. [0:40:44] Instead, it protects the investment of taxpayer dollars, as well as funds donated by local businesses, faith leaders, and community partners who trust us to do this work responsibly. By giving the state appropriate authority, this bill helps protect the good work being done across Georgia and allows accountability when individuals or organizations seek to exploit people in recovery during one of the most fragile periods of their life. On behalf of the peers we serve, the communities we work in, and those of us with lived experience, I respectfully ask for your support. [0:41:19] Thank you for your time and consideration. [0:41:21] Okay. Questions, anybody? Thank you again for coming and for your long ti- long-term, uh, of being in, uh, recovery, uh, and for working with people up in Dalton. That's up in Katie Dempsey's district, one of our esteemed members that does a really good job. And I'm gonna get in trouble 'cause I don't know who represents Dalton anymore. Uh, do you know somebody like that? Who's your representative from Dalton? [0:41:48] Um, I'm from- [0:41:50] Jeff [0:41:50] ... I'm from Rome. [0:41:51] Okay. [0:41:51] Rome, Floyd County, and it is Katie Dempsey. [0:41:54] Is it Katie? [0:41:56] Yes. [0:41:56] Is it Kasey Carpenter that's from Rome? Maybe Kasey Carpenter. Both big people that are very much, uh, supportive of our mental health issues. Thank you. [0:42:05] Yes, ma'am. Thank you. [0:42:06] Okay. Susan Maxwell. [0:42:14] Okay. Good afternoon. And if it please the committee, my name is Susan Maxwell, and I represent STAN Inc, Home of The Door. I am also a person in long-term recovery, and January 18th, I celebrated over, uh, 25 years in recovery. [0:42:36] And I have the privilege to serve as program coordinator. We're out in DeKalb County. We are the only recovery community organization out there and addiction recovery support center. We service over 1,000 individuals monthly. And so with your support, anytime a committee wants to support, uh, recovery community organizations, it's a, it's a big wow. It's a great thank you. And, um, this disease affected my family, and so I love helping other people to help families know about the disease of addiction. [0:43:10] So I hope that, um, you take this into consideration, and thank you for your time. Oh, any questions? [0:43:20] Any questions? No. All right. Well, I think we've gone through that. Seems like you've picked a good bill. What, uh, now we'll see what the committee wants to do with it. I'm open. Okay. Reese, you, wants to make the motion. [0:43:37] Yes. [0:43:37] Representative Reese. [0:43:37] Madam Chair, as it relates to House Bill 657, LC520794, I move that we do pass. [0:43:43] Okay. And I see Representative Cheokas down on the end wanting to second it, and so we have a motion for and a second. Uh, any discussion about the bill? No discussion. So everyone in favor of the passage to the substitute to House Bill 657, say aye. Aye. Anyone opposed, say no. No. All right. [0:44:09] How many does it take? [0:44:10] Huh? [0:44:11] How many? [0:44:11] You're- [0:44:14] Okay. All right. So- Okay. Let's see. We have your passage. Thank you very much for bringing the bill for us. Okay, let's see. Uh, Senator Huffstetler, uh, you ready to go? Okay. You're up, and we will ... That's Senate Bill 162. [0:44:42] Are you ready? [0:44:42] All right. Thank you, Madam Chair. This is a bill from last year that was started to, uh, be able to get our physicians and our physician assistants out working a lot faster. Um, it got caught up in the process last year, didn't get through. In the meantime, the Composite Medical Board was moving on anyway with their software and doing some great things. So the process that used to take six months or longer in some cases is now down to where many of them are less than a month. [0:45:17] So it's been a, a, a great improvement on that part without, w- even without our bill. So this would carry it a little bit further and, um, would also put in a system for our hospitals, and the Georgia Hospital Association's fully supportive of this. Many of their CEOs have asked for it. That would basically be that when you are credentialed in a facility, then you're credentialed in every facility, unless a hospital wants to add additional requirements. [0:45:52] And subject to appropriations, the Composite Medical Board system can put in additional requirements that hospitals want. Maybe one wants this vaccine instead of that one, whatever. They can have that put in their system, which will take a little bit of time to do, but we can do it. We've, uh, we've had a s- a situation where, say, a employee goes out on pregnancy leave. You try to get somebody in there, and by the time they get credentialed, because we've gone through getting medical records and everything else, repeating information that's already there, the, the baby may be three months old by the time you get them credentialed. [0:46:32] The reason on line nine this is called the Paul Brock Act is because Paul Brock is a general surgeon who's actually done this with the medical students. The medical students ... And, and Paul Brock is also the dean of the medical college, uh, for the Northwest Georgia area. He runs the program for Northwest Georgia. He saw medical students paying hundreds of dollars every time they went to another hospital. He's like, "Why, why do they have to do this?" So he, he put it in a system and showed that it would work, and so now we're trying to roll it out to the physicians and the, uh, the PAs and the, uh, I guess you would say the AAs, the anesthesia assistants, of which I am one. [0:47:15] Um, the, the nurses, of course, come under the Secretary of State and don't come under the Composite Medical Board. Um, the, uh, other thing we were trying to give him, the, uh, Jason Jones, the director of the Composite Medical Board, is administrative approval on these licenses. And in fact, the physician board at the Composite Medical Board has already given him that. The, the PA board has not yet. [0:47:46] So what could happen is you could have a monthly meeting, say it was January 8th. All your paperwork gets in on January 9th. You have to wait for that February 8th meeting, uh, to start working. And so giving him admin- And I think they were pro- they're probably in the process of, uh, giving him that administrative approval anyway. But as long as, you know, everything's good on the record, there's no malpractice, no DUIs, whatever, clean record, then they can go ahead and start working, and then the board at the next meeting can, can finalize it. [0:48:20] So we're trying to give him administrative approval. Um, I did have in here, um, that we would have this system in place by October 1st. I've been requested by some of them to change that to, uh, January 1st of 2027. Um, systems take longer than I would like to put in place. But we will be able, if we can get all this in place, have our healthcare providers, of which there is a huge shortage, that, uh, they'll be very similar to a lawyer. [0:48:56] I'm, I'm credentialed in the state of Georgia. I've met all the requirements, all the education, all the licenses, um, and I can go work at another hospital on, uh, very quick notice. Or not, not just hospitals, but any healthcare facility when they're in a shortage situation. So it's gonna c- it's gonna give hospitals a quicker turnaround time. Unfortunate. Um, and I, and I'll tell you, I retired from full-time anesthesia a couple of years ago. Um, absolutely spotless record so far. [0:49:31] Um, uh, but yet to work at the hospital right across town a couple of miles away, it took over three and a half months for me to get credentialed over there. And I know people down here. I, I, I probably move a little bit faster than some people do in getting it done. So we need to speed that process up and get our healthcare workers, of which there's a big shortage, working. That's the, uh, essence of the bill. Um, it's changed a little bit from last year simply because some of the things we had put in here for the Composite Medical Board to do, they've already done. [0:50:07] And, uh, we appreciate all the work they've done in, uh, having a better system. The previous system, just an example of one of the things it didn't do, if your license was deficient, you hadn't sent in something that needed to be in there, it wouldn't even kick it out. It wouldn't tell you, "Hey, this is not done." It wouldn't tell the Composite Medical Board it wasn't done. So then you're calling and you're calling, you know, "What's wrong with my application?" They dig into it, "Oh, this is wrong." The system now is great, the Composite Medical Board put in. [0:50:39] It automatically identifies any deficiencies in your application and, uh, puts it in place. Anyway, um, with that, I see the chair is off, but I can certainly answer any questions. [0:50:57] Yes, uh- [0:50:57] I'm filibustering over here, but... [0:51:01] Representative Howard. [0:51:03] Yes, sir. Thank you, uh, co-chairman. And thank you, uh, senator, for the bill. I- I've had to experience some of this and since I've, my short term here at, um, at the Capitol with doctors trying to get certified here in Georgia, and we had to work this, so thank you for this, this, the bill. I guess my question is on line 11. You said the, uh, it, the data management system has already been implemented. So is it already in place, or we, are we looking for appropriations to make this happen? [0:51:37] There, there's no appropriations needing. The system is in place. We got the appropriations already. [0:51:41] Okay. [0:51:42] And they have been working all last year, uh, to put it in place. I'm not gonna say they've got everything perfect in the system yet, but it is substantially complete, and, um, it seems to be working very well. [0:51:54] Okay. [0:51:55] And it's, it's, uh, wi- without any legislation, just having the appropriations has sped things up greatly. [0:52:05] Any other questions? [0:52:08] No other questions? Do we have anybody that wants to speak on this one? Okay, we have, uh... Oh, you had a question? [0:52:19] I do. So does, does, uh, everybody's license expire at the same time at the end of the year and they need to renew, or how does that happen? And why would an individual not know that they were coming close for renewal? [0:52:33] Well, they, they generally are on a every other year cycle for, for most of us, and so it- it's an every other year thing. But you've also got graduates coming in that you're trying to get to work that are coming on all time. Some schools graduate in September, some in December, so it's an ongoing process. [0:52:53] But after you're in the system, everybody's expires at the end of the year. Is that, is that- [0:52:57] Every, every, half of, most of them are two year- [0:52:59] Oh, every other year [0:52:59] ... half of them will retire and then the other half. Those really aren't the problem. The problem has been if somebody in that system tries to go help out another hospital that's got a critical shortage, then it takes months to get them over there because of all the cr- And it's not just the Composite Medical Board, it's, it's hospital rules. But when, when Paul Brock did this in northwest Georgia for all the hospitals, he met with all the CEOs and they said, "If we need to change some hospital bylaws to make this work, we'll do it. We, we need it that badly. [0:53:29] We'll change the hospital bylaws." They actually, none of them had to change any of their bylaws to make this work. So it's a proven system on the medical students. They were the guinea pigs on this and now we're wanting to roll it out, um, to our physicians and PAs. [0:53:44] Well, thank you very much for the bill. [0:53:46] Okay, go ahead. Okay. [0:53:49] Representative Cheokas. [0:53:52] At the appropriate time. [0:53:56] Looks like this is [0:53:57] Questions? [0:54:00] Thank you to my vice chair. Uh, you can tell this is an unusual first meeting, so getting started is taking a little while. Okay, so, uh, there are no other que- uh, people that want to speak on it, so what is, what does the committee want to do about this bill? Okay. [0:54:19] We will do pass. [0:54:20] We got a do pass. Do I have a second? [0:54:22] Second. [0:54:23] Have a second, do pass. Is there any other, uh- [0:54:27] If I could add, they did want to change that date. The Georgia Hospital Association had requested that date on line 23 of October 1st be changed to January 1 of 2027. [0:54:37] Okay. They changed it? Okay. Is there any other discussion from the committee? No. Okay. I will say they have a new person working for the Secretary of State. Um, y'all should all meet him if you haven't. He's wonderful. He came from the private sector, and he is, he's already made a major change, not to the physicians area yet, because they're outside of it, and the lawyers and all. But there's, oh, I don't know, 20, uh, boards that he oversees, something like that. [0:55:14] Um, and now they, as of about one week ago, they can go out on a site and they can, uh, get a navigator that allows them to follow along with their application, telling them exactly what has been done, what is missing, and where they stand. And it is, the number of phone calls have gone down already tremendously. Um, he informed us that there was no way we could ever hire enough people to answer all of the telephone calls. [0:55:47] And he brought with him a stack of papers that were the laws that we pass, the rules that are made that put those laws into standing, and they were literally up to my waist in what they have to go about in overseeing all of these, um, boards as far as rules and regulation. And this new system, uh, will Cut down tremendously. Um, I asked him what we could do to make a real difference going forward, and he, he said if we would work on reciprocity, that that would be the biggest thing we could do to cut down. [0:56:27] And I said, "Well, how about you working on it while we're gone and bringing us a, a bill through the legisl- through the, you know, the governor's office?" And he said, well, he would do that. He's looking on how to do it. It would make a major difference, um, in how we serve the public of Georgia in getting the license and getting them to them quickly so that we can get people to work. All right, so we have a due pass and a second. So everyone in the favor of the passage and the substitute- I passed the amendment. We need to change it. Okay, what do we do? [0:56:58] Uh, the- Just a minute ... the line on 22, Senator. Is that correct? Thank you. 23, yeah. Yeah, we have- 23, yeah. Okay, we- It's effective January 27th. Correct. Mm. Okay. All right. We are in position to adopt that amendment. Everyone in- I move the amendment. Pardon? I move the amendment. Okay, good. Have I got a second on the amendment- Second ... for the date change? Second. Second. All right. Uh, we have a, uh, the proposal for the amendment and a second. Uh, everyone in favor of the amendment say, "Aye." Aye. Now we're back to the position where we were before. [0:57:30] Everyone in favor of the substitute as amended to Senate Bill 162, say, "Aye." Aye. Everyone opposed, say, "No." Okay, the ayes have it. Thank you. Thank you very much. Oh, and who's the House sponsor? I think you were carrying it last time- Oh. ... if you're willing to do that again. Okay. Thank you. If not, I can shop for one. No, it's all right. I'll carry it. Thank you. I'll be sending some things over to you, so thank you, Senator. Okay. All right. Next up is my, the bill that we passed out. [0:58:02] This committee passed this bill out of this committee last year. It's the substitute to House Bill 717, and you b- should be working off LC 60-0271S. I would like for the board of, uh, the, the, uh, director, um, or I'm gonna think, uh, and the lawyer for the Board of Medicine to come forward, and Dr. Kaufman. [0:58:32] And Dr. Kaufman, you're a psychiatrist, right? [0:58:34] Yes. [0:58:34] Thank you very much- [0:58:37] Thank you [0:58:37] ... to make a presentation. Okay. And... [0:58:45] Okay, we got it? Are they on? Okay. This is a bill that the board came to me last year, and it was reminiscent of a bill we passed several years ago. Uh, those of you who have been here a few years will remember, and most c- citizens remember, um, the prolification of pain clinics. Remember driving down the road and seeing the little signs at the side of the road, "Pain, call," you know, a phone number on it? [0:59:15] Uh, they were starting everywhere, and, uh, they were giving out pain medications right and left. And so what we do, there are new studies. Uh, psychiatrists have been working and studying psychedelics and their response and how they treat depression or PSDT or all of those types of drugs. And so, uh, we have one on the market that's ketamine, and this dr- this is specifi- uh, started out about ketamine, but there are others that are even more dangerous coming forward that will be Schedule IIs and all. [0:59:53] And, you know, what is recommended is that they would be used with therapy, that they would not be used just where you drop into a clinic and get them for whatever reason, but they would be done with the guidance of a psychiatrist. Have I got that right? And that's the way they are approved by the FDA. They're not approved for other ways that they are being used, and we find ourselves with clinics being started where there are no controls, no standards, no requirement for resuscitation committee, and ketamine is an anesthetic. [1:00:38] That's what it was used for to begin with, and it can, you know, depress your respiratory. It is a dangerous drug. So I'm gonna let the board have their say, and then Dr. Kaufman too, to talk to us about how this bill works and why it's so important that we, in protecting the people across the state of Georgia, that we don't make it and totally take it off the market, but that we just begin with new clinics that are starting to put in standards and make sure that we are protecting, uh, the people of Georgia who often do not know and do misunderstand exactly what a drug can do. [1:01:23] Like ketamine, you can have out-of-body experiences. You can have hallucinations. They don't always happen right away. They can happen a week later. You can be driving down the s- road and have an out-of-body experience, which makes it a very, um, traumatic to you and perhaps to other people on the road that you might cause an accident. So with that, I'm gonna turn it over to the board, and you can introduce yourself a little more, and Dr. Kaufman, anything you would like to say about yourselves and go forward. Okay. [1:01:52] Thank you, Chairwoman Cooper. Thank you, committee, for hearing this bill today. So my name is Kimberly. I am the deputy executive director and legal officer for the Georgia Composite Medical Board. So this bill was passed, um, it was coming out of the board because the board had set up an ad, a k- ketamine ad hoc committee because we were receiving a lot of information from the public, from other physicians in the areas where these clinics were open, asking us, "Is it legal for people to do this?" So the board started looking into it. [1:02:25] So this is a new wave of drug clinics in Georgia that we're trying to get in front of before it becomes an issue. So before we enter the next opioid crisis, we're trying to get ahead of these types of clinics. Uh, the goal is to license the clinics, establish parameters that promote safe and effective prescribing, administration, and post-treatment monitoring of psychedelic-assisted treatments and therapies. Treatment renders patients under the influence, and it makes them extremely vulnerable. These are psychedelics. [1:02:56] It is distorting their mental cognition, their function. Um, so ketamine itself is a Schedule III. It is currently only FDA-approved as a quick-acting general anesthetic but is being prescribed what's called off-label to treat disorders such as treatment-resistant depression, anxiety, post-traumatic stress disorder, and chronic pain. Other psychedelic drugs that are currently in clinical testing for rescheduling with the FDA include MDMA, street names are e- Ecstasy and Molly, and psilocybin, street name magic mushrooms. [1:03:31] Those are currently Schedule I controlled substances, but they are currently under clinical trials for rescheduling for use in some of these treatments. There are currently no consistent parameters around psychedelic-assisted treatment and therapy to ensure patients are as safe as possible from harm and, uh, harmful side effects. Possible side effects of ketamine itself include hallucinations, distortion of sight and sound, feelings of disconnectedness or not being in control of one's self, agitation, depression, cognitive difficulties, unconsciousness, depressed breathing, amnesia, involuntary rapid eye movement, dilated pupils, stiffening of muscles, possible nausea, and in extreme cases, a condition called hallucinogen persisting perception disorder, or HPPD. [1:04:25] So HB 717 passed this committee last year with no challenges. This bill, in its current stage, there have only been a couple minor updates. So we updated the original language. We had them listed as anesthesiology assistants instead of anesthesiologist assistants, so that has been corrected. And then there has been a grandfathering clause added in. So line 63, starting on line 63, originally, the original bill required the clinics to be fully physician-owned, just like pain clinics. [1:05:03] This bill has been amended to add that the clinic shall be wholly or majority owned by a physician licensed in the state who meets the requirements. Um, however, they can only be jointly owned between a physician and a certified nurse, registered nurse anesthetist, so a CRNA. So it would allow a physician and a CRNA to be in partnership to own these clinics. There's also a grandfathering clause on line 68 that it would not, this bill would not apply to any clinic in existence and operational before the effective date of this act. [1:05:37] So it would not require anybody who owned a clinic previous to the signing of this act to, to divest their ownership. [1:05:47] There was one additional add on line 102. So this was actually, just came to us earlier today. We understand that there are currently drugs in clinical trials for, um, treatment-resistant depression. So we were asked to add in something along the lines that would protect the administration of those kind of drugs for on-label use. So line 102 to 104 were added. [1:06:17] So those were the only changes to this bill from what was originally passed out of this committee last year. [1:06:24] Okay. Uh, Dr. Kaufman. [1:06:27] Thank you. Hello. Good afternoon. My name is Dr. Kelly Kaufman. I'm a licensed physician here in Georgia. I'm board certified in psychiatry and forensic psychiatry, and I'm a distinguished fellow of the American Psychiatric Association. So I'm here today to speak about the medical kind of consequences of ketamine and other, um, uh, psychedelic drugs. So ketamine and esketamine are important drugs that have been proven to be life-changing in certain populations, but they are inherently dangerous medications that must be prescribed carefully. [1:07:02] Ketamine is FDA-approved for use as an anesthetic, and it's primarily used in the hospital setting in an emergency room or operating room setting. Uh, intranasal esketamine is FDA-approved for treatment-resistant depression and major depressive disorder with acute suicidal ideation or behavior. Um, esketamine, it has a pretty, there, there are some stringent, uh, restrictions on its prescribing. It has a REMS database, uh, where the physician prescribing must enter information regarding each patient, and ca- side effects or any problems with the administration of the medication that a patient might have are entered into the database. [1:07:44] And as a result, um, there are less, um, liberties taken with the prescription of esketamine than there are with the prescriptions of, such as ketamine and, and that we're anticipating with future psychedelic drugs. Um, what we know is that although, you know, these medications have limited FDA approval, they are still beneficial for other conditions that patients have. And w- what we see is that that landscape can kind of open up, uh, the, an influx of clinics like IV infusion centers or pain management clinics, and that's what we're trying to prevent. [1:08:24] Um, uh- Ketamine and esketamine can be safe and effective treatment modalities, but only when they're administered to patients under the direct supervision of a, of a physician with appropriate training. Um, and for several reasons, this is important. So patient selection and dosage are paramount. Um, there's no one-size-fits-all approach when it comes to ketamine. Every patient responds differently, and as a result, every patient must have an individualized treatment plan. So algorithms and template-driven treatment plans are simply not appropriate and are inherently dangerous. [1:09:00] Um, there are patients who would otherwise benefit from these treatments, but for whatever reason, they have other conditions which may render them to be a poor candidate for these condid- for this treatment, and things like that, uh, could include psychotic disorders, severe anxiety disorders, poorly controlled blood pressure, cardiovascular conditions, and substance use disorders. Um, and so, you know, par- choosing the correct patient and the correct patient plan is incredibly pertinent, uh, to ensure the safety of these medications. [1:09:34] Um, ketamine and esketamine treatments both have a high risk for acute medical complications, including respiratory failure, seizures, cardiovascular issues, including dangerously high blood pressure, increased heart rate, arrhythmia, and even sudden cardiac arrest; psychiatric complications, such as hallucinations, panic attacks, or severe dissociation; uh, and emergence delirium, which is when someone kind of comes out of the hallucinogenic or psycho- psycho- psychogenic state that's been elicited, and they are disoriented and confused in that waking up period. [1:10:12] Because of the risk for these acute medical complications I've just described, ketamine and esketamine must be administered in a medical setting capable of monitoring patients and responding to any acute issues that may arise. So clinics must be able to monitor patients' vital signs for at least two hours after treatment, and they must be equipped with emergency resuscitation equipment for both airway issues or sudden cardiovascular emergencies. They also must have staff on site who is capable of managing these emergency conditions should they arise. [1:10:50] Uh, finally, I would be remiss not to emphasize that these treatments are only one piece of the puzzle in treating these complex medical diagnoses. These patients should continue to participate in regular therapy, and they should have routine assessments with a psychiatrist in order to monitor any progress or relapse in their condition and to determine when ketamine or esketamine treatment should be stopped. These drugs are not meant to be prescribed indefinitely. The model of a ketamine clinic where a patient can pop in and request therapy independent of an ongoing comprehensive treatment plan is not a model that will benefit patients, and it's very likely to harm them. [1:11:32] Um, I have also, uh, I have a chart. I, I pulled something that was published for the dru- the DEA, and I'm sorry, I was brought in kind of last minute, and so I, I didn't provide it to you beforehand. I apologize. Um, but it kind of shows the d- the two drugs, ketamine and esketamine, and, um, p- dispensed by prescriber type. And you can see that beginning in about tw- 2020, there's a quite an uptick in prescriptions of ketamine by NPs and PAs, and it really seems to spike, uh, beginning in 2022 and then 2023. [1:12:11] Um, as I said before, esketamine is much more tightly regulated, and so you can see, um, the, the blue line here is psychiatrists and neurologists. The black line is, um, NPs and PAs. So you can see that as the physician prescriptions are trending down, the other prescribers are trending up. Um, I do have copies for you if you would like them, and again, I apologize for not providing them again beforehand. [1:12:37] Just so the committee will understand, and, and w- we are talking about, the one she's talking about that the line is going down is the one, I think it's a nose- [1:12:45] Yes [1:12:45] ... or it's a powder type thing. [1:12:47] Yes. [1:12:47] Uh, it, it's really highly regulated and not- [1:12:51] It's critical [1:12:52] ... uh, you know, and it's offline and, you know. And, and so the commit- the committee will know, only physicians can use offline medications, but only physicians can prescribe them when they're offline. They're not allowed to be prescribed by other people, and they don't encourage it really to using them offline. And is that correct? That's my g- reading of the FDA law, but- [1:13:17] Yeah. For the- [1:13:18] I- [1:13:18] ... for drugs like esketamine, um, as was stated, that it is part of a REMS program, which means the p- the prescribers have to be registered with the FDA. The patient has to be in the office. They're not allowed to take it home with them. They have to be administered the drug in the office. They have to stay in the office- [1:13:35] Okay [1:13:35] ... for a period of at least two hours after they're administered the drug for monitoring. Um, and the doctor has a, a system within the FDA that they have to log everything from that patient interaction. So that is for the esketamine. That is not the same thing for the ketamine. [1:13:49] So the one that's under question, I, and Dr. Howe's been shaking her head as it's gone along, of a- as being an anesthesiologist, is having ketamine injected IV, which is straight into your blood system, which then, you know, acts in a much faster rate and can cause so many of the problems. And as the doctor indicated, you know, they need to stay somewhere for a couple hours, and these clinics are setting up with no emergency clinic, and, like, they really are set up for, like, to have in the em- uh, operating rooms in place with emergency equipment handy. [1:14:27] I understand there's special respiratory training on them in some areas, but how to help them recover, not even just the regular respiratory rehab training because of the drugs. Um, and they don't have any of that equipment, and they're not-- They're just They're just like the pain clinics were. It's just you get the medicine. Basically, it's handing out a medicine or treating a medicine. I think the other problem is there's not the rigorous investigation and thorough checking on patients, what I found really concerning. [1:15:01] And patients that come to the clinics maybe that are not under regular care, and they've heard about it and they think it's, you know, can be a thing, they don't, are not always honest about telling you what other drugs that are, you know, to help them get high and telling you what they're on. And the combination of other drugs like codeine and heroin and things with keta- ketamine is deadly. And so it's one of the problems that the board has seen. [1:15:33] And, you know, I, I fail to understand how people can put themselves in such a danger, but, you know, they hear about things and they wanna try something, or either they truly have a drug addiction. And they've also heard that sometimes this can make you, taking ketamine with other stuff and just by itself, can make you have a nice high if you just wanna get high. So I don't know. It's, um... I've done a lot of reading. Let's go to questions. Uh, Representative Reese. [1:16:03] Thank you, Madam Chair, um, for the opportunity to ask questions. Thank you for bringing this bill. I think that when we're trying to enhance safety measures around healthcare implication, that's always a great thing. Um, I do have a question for you, though. Um, if you will join me on line 63. I, and I'm glad that you noted in your presentation that that was a update to the language because that is something that I did have some concerns about earlier. So it has now advanced, uh, when we go to the provided, however, on line 66 to, um, allow a combination, I guess, of doctors and CRNA owners c- together, right? [1:16:44] Yes, sir. [1:16:45] And I also understand that any clinic that was, um, currently CRNA owned is grandfathered in according to line 68 and 69, correct? [1:16:57] Um, any clinic that's currently in operation, in existence and operational, so regardless- [1:17:02] Right [1:17:03] ... of who the owner is. [1:17:04] So can you help me understand, um, w- with the provisions that we have in this bill, it seems as if ownership has a little less of a relevance. Why can't CRNA to- totally, wholly own a facility as long as they're following the same guidelines? I like the guidelines. I'm just trying to understand the restriction on the ownership. Why does it seem like we're forcing a doctor to be a part of the ownership in this aspect when we have guidelines regardless of the ownership? [1:17:39] We have guidelines of which they should be following. [1:17:41] Can I start with that answer? [1:17:42] Absolutely. [1:17:42] Since it's my bill. CNR- CRNAs cannot order any medication. And you have to, if they own the clinics totally, they could not order the medication to use. And- [1:17:59] I, I guess, Madam Chair, I was thinking that the doctor who is seeing the patients is the one who will order the medication and not the owner. [1:18:06] The clinics are, doctors are not seeing these patients necessarily. In fact, that would be a rare thing that a doctor would see a patient in the clinics that we're talking about. We're not talking about the ones run with a psychologist or the therapy. We're talking about the ones that have gone up. They have a room. It has a great big recliner in it. You go in and you get the IV, and then you walk out with no restrictions, no safety measures, no real in-depth health. [1:18:37] They don't know you, and you just agree to about an 8,000 to 12,000 round of treatment, uh, about six weeks. [1:18:45] So we just allowed and grandfathered in those that currently exist, which are currently operating under those current standards. And I like the restrictions. I don't want you to get me wrong. [1:18:55] No. Yeah. [1:18:55] I think this bill is doing a great thing. [1:18:56] No, I'm glad you're asking. [1:18:57] I, I'm just concerned about the restriction on ownership. [1:19:00] That's- [1:19:00] Because to me, the real guardrails should be around the operation and making sure whoever's overseeing the insertion of, of, of the IVs and things of that nature, making sure they have the right academic credentials to be doing their job. That two-hour assessment you talked about afterwards, the person needs to be evaluated, making sure that, that, that they, um, vital signs and things of that nature are, are fine. I think that's great. I'm just, I'm just strictly looking at the ownership. Why does a doctor being a part owner enhances the operation of the facility? [1:19:37] So we modeled this after the pain clinics. That's how pain clinics are set up right now. So any pain clinic in the state of Georgia has to be fully and wholly owned by a Georgia licensed physician. So that comes in two parts, and I apologize. [1:19:50] No. [1:19:50] Pain clinics predate me, um, with the Georgia Composite Medical Board. So pain clinics, when they originally came on site, they were owned by anybody, which is currently how these clinics are set up now. It doesn't matter if you're a CRNA, if you're not medical related at all, you can open up one of these clinics and just hire people to run it. Um, so the Georgia Composite Medical Board has authority over the pain clinic license, and they also have direct authority over the physician owner because the Georgia Composite Medical Board has authority over that owner's license to practice medicine in the state of Georgia. [1:20:25] So it kind of provides a double layer of protection for the public, both from the perspective of the clinic itself as well as the, as the doctor that's in charge of running that clinic. Because if something's going wrong, that doctor is going to be held responsible for everything that happens in that clinic, um, where Georgia Composite Medical Board does not have regulatory authority over CRNAs. [1:20:48] And this is my last comment, Madam Chair, and, and I, and I respect that. [1:20:51] Mm-hmm. [1:20:51] And I get that, but, you know, I'm also thinking about how we're advancing legislation like in the housing area because you have these corporations coming in owning homes and there's no one for the tenant to contact. To me, this is just gonna set up a situation where you have a few doctors owning a lot of clinics, and they're not doing this oversight that you're talking about And I think that's gonna become problematic, you know, with, with, with just because I'm a doctor I can own one, but that doesn't mean I'm at that facility every day watching. And it may put their license in jeopardy. [1:21:21] I, I, I don't know. I just, I just believe in the restrictions you had in here. And I think regardless of the ownership status, whoever owns it, they have an obligation to meet these restrictions that we have put forth, which I think are great and, and is good safety net for our general public, because we do need to make sure people are safe. It's the ownership piece that's kind of tripping me up right now. Thank you. [1:21:42] Representative Reese, I thank you for your questions, and, and they're really good questions. I will tell you, we have not had that problem of the doctors, anybody that owns a pain clinic, just owning a bunch of them and not meeting the restrictions that we put on with the pain clinics. They're not passing out the drugs and the medications like was happening before. The other thing is, is that the clinics that have been started, none of them have, that we can find so far, have thought it important enough to have all of these safety features, and they're being started by CRNAs. [1:22:21] So, you know, you would think that since CRNAs know how dangerous these drugs could be, that they would have had these in the clinics they already started, and there's not that pattern. And the other thing, being an attorney and a respected attorney like you are, the person that's going to bear the brunt when something goes wrong and a patient dies or is harmed is going to be not the CRNA but the physician. And so, you know, what it means is just it falls on them, the responsibility of who the medical board can oversee and can jerk their license or fine them or however they want to handle it, to make sure these are run the correct way or they're somebody to fall back on. [1:23:08] But thank you for the question. [1:23:09] Right. And if I may add one more point. Um, so in regards to ownership, sometimes you have to be careful with what is passed down policy-wise within that clinic, because if that owner disagrees with how the physician is actually treating patients and they tell them, "Either you're gonna treat patients this way or I'm gonna fire you," that is inhibiting the actual licensee's ability to practice clinical medicine without the intervention of an unlicensed party or a lower licensed individual. [1:23:46] 'Cause CRNAs are mid-level practitioners. They're advanced practitioners, but they are still nurses. They don't necessarily have any authority over the practice of medicine of a physician. So if they were put in that ownership position of full ownership, then they may try to control the actual physician's clinical treatment of patients. [1:24:09] Representative, Representative Au. [1:24:14] Thank you, Madam Chair, uh, and thank you for bringing this bill. I remember discussing it last year and voting for it, and I look forward to voting for it again. Two things. One is, uh, with respect to this conversation we're having, and thank you, Representative Reese, for, for bringing this question, I wonder instead of framing it like why are we forcing a doctor to take ownership of this business model, that we think of it the way that I think it should be properly couched, which is requiring that a doctor is the one ultimately taking responsibility for this care. [1:24:48] That, I think, is how we should frame it and to move it away from this sort of business model sense to a clinical care and responsibility, um, framework. The reason that I am especially glad that we're bringing this and discussing it, and the reason it comes up so often when I tell people about this bill that they're so surprised that, that ketamine clinics are so unregulated, is that I, I think I'm probably the only person on this dais who's given ketamine to humans in infusion form, uh, so I have great respect for this medication. [1:25:21] There's very good use for it, as we've heard, but it does come with attendant risks that require additional monitoring for safety. And I'm just gonna give you an example, as we often use ketamine in the OR as an adjunct to treat pain in a different way in a non-opioid based, uh, pain medication. But when we drop these patients off in the recovery room in the PACU, the post-anesthesia care unit, we always tell the nurse, "Also, this patient got ketamine." So this is in addition to the presumption that they are altered in the sense that they are waking up from general anesthesia, but in addition we need to tell this nurse also ketamine is involved because it requires extra attention and extra care for recovery and more time, frankly, that we don't let a patient who is recovering from a ketamine infusion just walk out the door because of all the, um, attendant risks that come with it, including an altered sensorium, a delayed reaction time, that the fact of, um, the idea of a patient leaving one of these clinics and driving home makes me, like, terrified for, you know, my teenage son who just got his driver's license, right? [1:26:25] So I, I think this is a good patient safety bill. I think it's a good societal safety bill. I'm glad we're discussing it. Um, I'm sure there'll be more questions and more details that we wanna hash out, but I do, um, thank you for s- putting something in place ahead of time before this becomes a bigger problem than it is, because we have seen that in the past, that when we are slow to react and anticipate problems and types of treatments and modalities are picking up, that we, uh, that we're reacting too late, and then people ask us, "Why didn't you do something about this earlier?" So thank you for preempting that. [1:26:58] Okay. Um, I'm getting committee members that need to go to things, and, uh, if it's a question you can ask later, let's see if we can hold them and move really quickly. Uh, Representative Barnes. [1:27:11] Thank you, Chair Lady. Um, thanks for this. This is pretty interesting as I haven't administered to humans, but animals, and they don't tell me their psychedelic thoughts. So, um, my question is, I know CRNAs go through rigorous education. Are we d- doubting the education? Is there something that has, um, prompted this policy? Are we just being proactive like Dr. Au said? [1:27:42] No. I think we are being proactive, um, for what the board is currently seeing happening in real life that's out there on the Georgia streets right now with the clinics that are currently open that we've been able to find online. Um, there's no actual registry for these at this time, so we don't know how many actually exist in Georgia. Um, but in regards to the CRNAs, that's actually why this bill was built the way it was, because it provides administration only by a physician, a CRNA, or an AA because of their specialty training. [1:28:13] Okay. Are we, are we, um, factoring in the workforce impact that this will have? Like, will this impact the workforce? Like, will it reduce the amount of clinics that we have? [1:28:30] Wouldn't think so. Would you? [1:28:31] I think that's true. [1:28:33] So ketamine, uh, ketamine treatment is not for just your run-of-the-mill depression. Um, certainly, you know, I, I think the, the point here is that we're... CRNAs are highly educated, like you said, and they are more than equipped to administer this medication and to monitor a patient afterwards. Um, they're trained in airway management, but they're not trained in determining whether or not this, you know, does this patient have depression? Do they have PTSD? [1:29:03] What... They cannot diagnose a patient with a condition. Um, they certainly don't have the training to determine if ketamine would be safe for that patient for that condition that we're aiming to treat. And I, I think that's kind of the point is we're looking to team up a physician with another physician or a physician with a CRNA or an AA, right? So they can administer the medication, but it shouldn't be that CRNAs are independently, um, you know, uh- [1:29:35] Opening up their own- [1:29:36] Open... Yeah, exactly. Exactly. [1:29:37] So this won't, this won't reduce the provider pool? [1:29:40] Representative- [1:29:41] It should not. [1:29:42] I... Remember, I said can we make short? They said we're, I'm getting, gonna lose... Okay. Representative Frye. [1:29:51] Thank you, Madam Chair. Um, I just, I just have a couple of, [1:29:57] uh, um, thoughts about this. I think I appreciate the guidelines that are in place, but I've got a couple of inconsistencies in my head. Hopefully, you can explain them. So we want to regulate the clinics, but we don't know how many there are. [1:30:12] Correct. [1:30:13] Okay. And then, uh, Representative Barnes asked a question that, you know, has there been any action that has caused this? Are we trying to be proactive? So we're trying to be proactive, but we still don't know what we're, our target goals are. But then the second thing I have is about the ownership, because if the ownership is still allowed by the unknown amount of clinics that already exist, that are already owned by CRNAs, then what makes that safer than the ones that are gonna be owned by doctors? [1:30:50] And where are they currently ordering their medications from if the CRNAs can't get medications? [1:30:56] Representative Frye. Representative Frye, those are good questions. I, if, if I thought, when we passed this out, this committee last year, it was totally physician-owned. And I had somebody on the floor of the House come up to me and say, "Oh, I d- I just can't vote for that. I've got a CRNA in my district and he's got a clinic," and he says that would put him out of business and, you know, he's just doing this to make ends meet. [1:31:27] Now, that person, that's one of our colleagues, lives in a very nice neighborhood, okay? And CNAs make somewhere over around 200,000 a year, somewhere like that, and he, you know, thought he needed, you know, just to make a little extra money. And so we began to get pushback. And so it looked like to, uh, you know, get the bill through, just like we had to do, we had to make an amendment. And I changed the bill last year and had a rules committee chair, um, sitting in there to let the ownership be different. [1:32:00] It got lost in, in the, and it was never heard. They closed at 9:00, remember? Last sine die. But I had changed the bill to let the partial ownership, 'cause we were hoping more had not started. I mean, there's no way of knowing, but we know what the pattern is, and we know the ones that we have been, how they are being regulated. Is it the best thing? No. In my, I would just close them down and say nobody could have them. But i- in the realistic world, we have to work on it the way it is. [1:32:32] So unless you wanna, I don't, make an am- amendment and say we close the ones in existence down unless they follow the regulations. [1:32:40] We'll [1:32:42] So. [1:32:43] Follow-up comment. [1:32:44] All right. [1:32:44] Where are they getting the medication from if they can't order it? [1:32:47] They are working with nurse practitioners, or a nurse practitioner- [1:32:51] Okay [1:32:51] ... who can order a three. But the nurse practitioner is also breaking the rules because they are not able to order any kind of an offline medication, and they are doing it. Okay. So they found a way to circumstance the, the rules to be able to do this [1:33:13] Okay. And I'm, and I, I'm really just- [1:33:14] Or the law [1:33:16] Yes, ma'am. Thank you for that answer, and I, and I do appreciate that. So we have no system in place to monitor how many prescriptions a certain doctor or CRNA is- [1:33:27] CRNA, CRNAs do not write prescriptions [1:33:29] They don't write prescriptions, but how many d- [1:33:30] Nurse practitioners [1:33:31] No. Neither do nurse practitioners [1:33:33] Okay. So they're ordering it, and then they're flipping the use. Is that what I'm hearing? [1:33:39] Basically, yes. [1:33:39] Okay. Um- [1:33:42] Okay. That answer your questions? We need to move. [1:33:44] And I- I'm not in a good spot- [1:33:47] Okay [1:33:47] ... because I feel like there's still some inconsistencies, but I understand your position, ma'am. [1:33:54] All right. Representative Cannon, do you have- [1:33:57] Yep. Thank you. Okay. So I'm trying to understand, is the general category termed psychedelic-assisted treatment and therapy? Because if we're talking about ketamine, we're talking about ketamine. We're not talking about other options. So why are we putting in line 1517, why are we saying the larger term as well? [1:34:17] We're doing that because we are anticipating the clinical trials that are currently happening for rescheduling of the MDMA and the psilocybin. There's also clinical trials out there for LSD that have been going on in regards to providing to rescheduling those to treat these sort of conditions. [1:34:33] Okay. And so, um, I think it, uh... Okay, I understand the expansive angle to see what's coming down the pipeline. My concern is about how we discuss what type of therapy, how that's differentiated. So if it's intramuscular, that's different than if somebody has a ketamine lozenge. No? [1:34:55] Yes. [1:34:56] So why are we making it seem as though the same provider scope has to happen at that same time without being more specific to say, "If it is this type of therapy, intramuscular, then this person is in the room," or, "If it is this, then that person..." Help me understand how we are differentiating between the different treatment forms. [1:35:20] Well, the problem with lozenges, 'cause I, I know where you're going with that, so the FDA actually advises against lozenges because those are compounded and there's never any guarantee as to what the actual mixture of medication is within those compounds. Um, so that's more of a pharmacy issue in regards to lozenges versus intramuscular. Um, there's also a difference, and correct me if I'm wrong, from absorbing orally versus an actual injection infusion, whether it be intramuscular or directly an infusion into the bloodstream. [1:35:51] Okay. FDA is not the end-all, be-all for a lot of things, though. I just wanna put that on the record. My last question is just about, um, from the American Psychiatric Association, you mentioned the importance of the need for a psychiatrist to be in the room, um, present during this, and I spoke with clinical social workers who agree. Where does that say this in the bill? Because I don't see that in this bill. [1:36:17] It's, I don't believe that that line is actually in the bill. That would be part of the rules and regulations that the board is allowed to pass in regards to ensuring safeguards for this type of practice. [1:36:29] Okay. Again, it seems across the board about which guidelines we're putting in, which differentiations, it just, it doesn't feel very consistent. Thank you. [1:36:37] Okay. Thank you, Representative Cannon. Okay. Representative O'Steen. And I've got two people I think wanna call the, the, the bill. [1:36:45] Thank you so much, Chair. I just have a comment. I think that she said something that is important that we need to hear, and she said that we don't know how many of these clinics are out there. Is there some way we can get a handle on that for them to register somewhere to know what's being injected into people that we don't know what's going on? [1:37:05] That's actually the, part of the purpose of this bill, is because once this, if this bill were to pass into law, every single clinic, regardless of ownership, would have to register with the Georgia Composite Medical Board. [1:37:15] So those that are grandfathered in- [1:37:17] Would still have to register [1:37:18] ... would still [1:37:18] Correct [1:37:19] Okay. [1:37:19] Just, just their ownership doesn't have to abide by the regulation. [1:37:24] I think we have... That's the last question. I have three people that wanna talk on it. Um, I, John Walsh, can you just say briefly, like in a minute? [1:37:34] Yes, ma'am. [1:37:35] Are you somebody that's gonna use, that's using it? [1:37:38] I'm a current, uh, recipient of ketamine therapy. I'm a veteran of Georgia. [1:37:41] Okay. [1:37:41] I was wounded in 2013, ultimately cost of my left leg, artificial knee, plates in my face, screws in my shoulder. I went from being probably one of the angriest, most violent drunks you ever met to now, two years later, after ketamine therapy, which has been, I cannot even understate, the significant change in the quality of my life as a result, to now, in the last year of getting a degree in business economics at Harvard University. You know. [1:38:11] We're not trying to, to make, we're not trying to keep you from getting it or anybody from getting it. We're just trying to make sure that y- when somebody goes, they get it in a safe situation. [1:38:21] Understand. [1:38:22] Thank you. [1:38:22] I think this is really availability issues, I believe what you guys are discussing. And I just wanted to say I was asked to come here- [1:38:28] Oh [1:38:28] ... on behalf of, of my provider- [1:38:30] Okay [1:38:30] ... and just basically explain to I, I guess the committee, the significant change in, that's made in my life. [1:38:38] Which is wonderful, and we just wanna make sure that other people like you can get it in a safe environment. [1:38:44] Understood. Thank you. [1:38:44] And thank you for your service to our country. I'm sorry about why you needed to go get it. [1:38:49] It's all right. [1:38:50] But I'm glad it worked. [1:38:51] Appreciate it. [1:38:51] Thank you. [1:38:51] Thank you. [1:38:52] Brandon Greenidge. [1:38:58] Uh, good afternoon. My name's Brandon Greenidge, MD. I am a physician. I am the owner of Invictus Clinic, a ketamine clinic. Uh, I would like to keep this under a minute for you. However, there are so many, um, discrepancies and errors in what has been, uh, presented today, I'm not sure that's possible. I'll, I'll cut it short if you'd like. First of all, if you haven't seen an Invictus, uh, um, a ketamine clinic that maintains all of the standards- That, uh, anesthesiologists should. Please visit me at 1545 Powers Ferry Road. I believe that's your district. [1:39:29] Second, the, um, representative who lives in a very nice house is my representative. I have a CRNA partner, uh, but, um, yeah, he was, he's the representative for an MD that doesn't do it correctly. [1:39:44] An exact example of what, you know- [1:39:46] Correct [1:39:46] ... that the bill does. [1:39:47] Absolutely. [1:39:48] So thank you for doing it that way. [1:39:50] Thank you. [1:39:50] Any- [1:39:51] I require a physician or LPC, someone who is able to give a diagnosis in the state by law. I require their diagnoses. I do it the right way. [1:39:59] Thank you. [1:40:00] I also have opened up a second clinic in Warner Robins, a very underserved community, who is- [1:40:06] Okay [1:40:06] ... it is specifically there to not only, but, but main priority to treat, uh, our veterans, uh, utilizing a, a nurse practitioner, which protocol agreement was rejected by the composite medical board only a few months ago. Um, and, uh- [1:40:24] And there must've been a reason for that. They don't reject very many of them. [1:40:27] Well, she's a, a critical care nurse practitioner, uh, d- using ketamine on a daily basis in the, in the, in the unit. [1:40:34] Okay. [1:40:34] Um, nurses are allowed to give, and paramedics are allowed to give ketamine, uh, on ambulances, on helicopters, but you're telling me that a critical care trained nurse practitioner cannot give it in a- [1:40:46] Right [1:40:46] ... in a stable set situation setting. [1:40:48] Dr- Dr. Greenidge- [1:40:49] Yes, ma'am [1:40:49] ... thank you very much for your... And thank you for doing it the, trying to do it the right way. If you wanna wait till after this is over, I'll be glad to talk to you and- [1:40:57] Okay [1:40:57] ... and, you know, but there's always exceptions to it, sir. And- [1:41:01] Yes, ma'am [1:41:02] ... you're, you're on the right track. I'm sorry we've ran into the- [1:41:04] Can I just say one thing real quick? I, I agree there needs to be regulations. Absolutely. [1:41:08] Mm-hmm. [1:41:08] It's the Wild West. Let, let there be no doubt. But preventing a nurse practitioners and all APRNs other than CRNAs from, from, from giving ketamine will absolutely close the m- multitude of clinics in this state- [1:41:23] I- [1:41:23] ... including my Warner Robins office, which will close immediately upon this, because I am having to drive from Cartersville to Marietta to Warner Robins, where I was this morning, but came back because I implore you all to vote this down- [1:41:36] Okay [1:41:36] ... as it stands, because clinics will absolutely close with nurse practitioners. Albany, Georgia is, is using a nurse practitioner under an MD. It will close. [1:41:45] So thank you for- If, if, if he's open today, he is grandfathered. Is that correct? That's exactly right. Yeah. You're grandfathered in. So- So thank you very much for that [1:41:52] ... not, not the nurse practitioners th- th- giving the medications. They're only the ownership. [1:41:56] Doctor, you know, one of the problems that we have with nurse practitioners, first of all, if they're, you know... It doesn't say that you can't have a nurse practitioner. It says that they can't- [1:42:08] Administer the drug [1:42:09] ... administer it, because that is out of their, their, it, out of their purview of doing it, right? [1:42:15] They're g- they're giving it in the ICUs every day. They're- [1:42:17] I- [1:42:18] ... RNs and, and paramedics are giving it- [1:42:20] Those are... Sir. [1:42:22] Yes, ma'am. [1:42:22] Those are different areas. And like I said, I am so glad that you are trying to do it the right way, and you talked about the first clinic. But not everybody is like you, and there's, and we don't have a system of making one size fits all. [1:42:38] We classification. [1:42:38] And the nurse practitioners do not fall under the medical board, and so you don't have any regulations or any way to oversee that. Thank you very much for your testimony. [1:42:50] I'll talk to you anybody that's available after. [1:42:51] Matt. Okay, thank you. Uh, Matt Oxford. [1:43:00] Thank you, Madam Chairman. Thank you, committee. My name is Matt Oxford. I'm the immediate past president of the Georgia Association of Nurse Anesthetists. Uh, I'd like to thank the Composite Medical Board for their substitution to allow for the ownership with CRNAs. Uh, I think we've heard a lot of hypotheticals today, and I think, uh, if anything we've learned, there does need to be regulation, but maybe we need to spend a little more time on this topic to come up with a, a better solution than a rushed bill, uh, that doesn't really help our veterans and help our citizens. It just pushes a bill through. Thank you. [1:43:30] Thank you for your testimony. We have not rushed this bill through. It went through this committee last time. We discussed it, and we have made the, what we thought. And, you know, one of the things that we can do, if it doesn't work, we, they have a way of coming back and changing laws, and we do that quite often. I think the first bill you heard today, I think that there was a change in that one, or the second one, there was a change in it. So I'm gonna go, who wants to call the question? Okay. [1:43:59] Make a motion. [1:44:00] Okay. We have a motion. [1:44:03] Motion. [1:44:03] And second it. Any further discussion on a brief thing? No further discussion. What's the- [1:44:11] I got [1:44:12] Okay, go ahead. [1:44:13] Yeah. Madam Chair, thank you. I was here when we passed the pain clinic bill, and we had investors moving up I-75, opening up these clinics and endangering the lives of many, many people. Uh, Representative Tom Weldon championed that and worked hard for it, and, uh, I ha- gladly support this legislation. [1:44:37] And I will tell you, we heard the same stories. They were gonna close. People weren't gonna able to get their pain medicine. It didn't happen. People who need the pain medicine are able to get it. It's the ones that were not doing it the right way. And so it's just, we've gotta call the question if there's no further discussion by the committee. Everyone in favor of passing the amendment to House Bill 717, show your hands. [1:45:08] Okay. All right. We have one. You got it? Down on the other end. Okay. Everyone opposed say no. Okay. The ayes have it. The bill passes. Thank you very much. And to the two gentlemen, if you wanna talk to me afterwards, I'll be glad to talk to you. I'm still here. Uh, oh wait. Oh, whoop, whoop. We can't, okay, can't go anywhere. If you- We're not through. We have to, we have people that came all the way to make presentations, so unless you have to leave, please stay. [1:45:39] Gee, cats. [1:46:53] Can say that [1:46:57] making laws is not always the easiest things to do. And so I apologize to those of you. I will tell you that I've got a committee meeting com- member coming back. Even though there are few of us, we are still important, and this goes out all over Georgia and is recorded if people want to see it. Okay, let's call the, someone, whoever's presenting for the Jor- for the Prader-Willis Syndrome. And I bet that's why we have a lot of children here, or some children here. [1:47:29] And they have been extremely, or at least the little one on the front, is that the only one we've got? [1:47:36] No, there's more. [1:47:37] More. [1:47:38] They're being awfully good. [1:47:40] Yes, we have many families represented here today. [1:47:42] How many? [1:47:44] Um, if our family members can raise their hands, I think that'll give you a good sense. [1:47:49] Thank you very much for coming and putting up with us and the length of time it's taken us to get to this, so thank you. [1:47:57] So I'm gonna introduce, um, Dr. Michael Gambello. He is a professor and vice chair of the Department of Human Genetics at Emory University School of Medicine, and he is the director of the division of medical genetics at Emory Healthcare. He oversees genetic services and clinical trials at Emory and Children's Healthcare of Atlanta, and he leads Georgia's newborn screening follow-up program, as well as newborn screening quality improvement research. He is also currently the principal investigator for three clinical trials for patients with Prader-Willi syndrome. So please welcome Dr. [1:48:28] Gambello. [1:48:30] Thank you so much for that nice introduction, and thank you for, um, listening to us today and giving me the opportunity to advocate for people with Prader-Willi syndrome and their families. You may not be familiar with Prader-Willi syndrome, or sometimes it's called PWS, and that's why I'm here, to, to, uh, educate you about this disorder. It's a rare brain-based genetic disorder that typically occurs as a new diagnosis in a family due to a missing piece of genetic information, and this missing piece of genetic material disrupts brain function, particularly an area of the brain called the hypothalamus, and this leads to a very predictable constellation of signs and symptoms for, uh, these patients. [1:49:18] Um, and, and it really presents lifelong medical challenges. Um, so I'll pre- briefly describe you how Prader-Willi affects people throughout their lives, and it begins in infancy, which is often when we, we diagnose these children because the babies are extraordinarily floppy, and they can't feed properly. They don't gain weight. They need special nipples. They need sometimes tubes to feed. And in addition, there's significant developmental disability, so they're going to need speech, um, occupational, uh, and, um, uh, physical therapies. [1:49:57] In childhood, we have a dramatic shift in the medical problems of these children because now, in spite of the feeding difficulties as a baby, they develop insatiable appetites, and that's because the hypothalamus isn't working properly, and this is called hyperphagia in the medical lingo, and without strict environmental controls, these patients will develop obesity and obesity-related conditions. [1:50:29] Um, families not uncommonly have to lock cabinets or refrigerators, and it's not behavioral. It's, again, it's because the hypothalamus isn't functioning properly. There are also issues with sleep, hormonal regulation, et cetera. During adolescence, a difficult period for everybody, these children have even more challenges because there's significant psychiatric and behavioral risks, including anxiety, obsessive compulsive disorders, um, as well as emotional outbursts. [1:51:06] The period's especially challenging because there's that transition from pediatric care to adult care, which is a huge challenge for these families. In adulthood, individuals with Prader-Willi face high rates of obesity and obesity-related diseases such as elevated blood pressure and diab- type 2 diabetes. Most adults require supervised living due to cognitive and social limitations, and as they age, mobility, stamina, bone health decrease. [1:51:38] So as you can see, Prader-Willi syndrome is a lifelong problem with complex medical needs, and outcomes really depend heavily on consistent access to specialized coordinated care in endocrinology, behavioral health, nutrition, sleep medicine, and social services. When care is fragmented for these people, um, there are high rates of emergency interventions, hospitalizations, and institutional placements. So I really wanna emphasize that early diagnosis and continuous care really improves health outcomes, increase independence, stabilize families, and reduce long-term costs to the state. [1:52:20] So I hope that gives you some flavor of this rare disorder that you will see affects a good number of people in this state. [1:52:27] Okay, if I can ask the question. Is there anything that current medicine can do to help these children? [1:52:36] We have a number of interventions that we are using to help these children and adults, but it's by far from perfect, which is why we're doing clinical trials now- [1:52:45] Okay [1:52:45] ... to find more ways to help these patients and families. [1:52:50] O- okay. So in letting the legislature know and trying to get the word out, is there something i- i- you know, and a- and besides having a just an unlimited budget, which we don't, so, you know, and already being told not to ask for stuff this time, how can the legislature help? [1:53:13] Um, that's a good question. I think maybe some of the folks from the foundation can sort of chime in about that. [1:53:18] Okay. S- does anybody else want to ask a question or... I mean, I can't imagine. I have enough trouble staying out of the refrigerator myself, and I don't have this problem. I can't imagine keeping a child when they get old enough to open the refrigerator door or at school when they get a little bit older and their friends get cupcakes and everything else. I, I don't, I can't imagine, and as I had a little listen what a problem it is for a parent. Constant supervision, I would think about. [1:53:50] Who's next? [1:53:51] Karen. [1:53:52] Okay. Uh, who, who's got... Oh, who- [1:53:55] Representative Cannon. [1:53:55] Oh, D- Representative Cannon, you had a question? [1:53:57] Yeah, I just had a question about the now comp waivers. Are there enough for your community? What have y'all seen from there? And then I see that you have information here about CMS and s- you know, care coordination, and just really curious how the health insurance infrastructure in Georgia has or has not met your needs. [1:54:19] Amanda? [1:54:20] Yes. Um, to answer your first question, no, there are not enough waivers to accommodate our population. In fact, um, sometimes even getting services at the early intervention stage is difficult. Um, and I'll talk a little bit in, in my personal experience about, um, our access to Katie Beckett waiver has been challenging both from a logistical standpoint, having to hire attorneys and other people to help, um, get that, but then also clerical errors that result in people getting discharged and us living out- lo- losing access to services and critical medications. [1:54:54] Um- [1:54:54] Okay. Let me tell you, let me tell you right off the bat, uh, the Katie Beckett, Beckett waiver had an, uh, something go wrong with it today. [1:55:02] Yeah. [1:55:02] And it, they took everybody off the Katie Beckett. It'll be back on. It was a error in the system. So- [1:55:09] Yes [1:55:10] ... we've already been told. It- [1:55:11] We're aware of that. My- [1:55:12] Okay [1:55:12] ... my particular issue is something different, which- [1:55:14] Okay [1:55:14] ... I'll, I'll talk about. [1:55:15] Well, no. Katie Beckett's very hard to deal with. I've dealt with them for years. I've fought. They, they outsource, and if you don't know, they outsource to a group of nurses who decides gets to go on Katie Beckett, and I have fought them over the years several times to, l- l- look, I mean, uh, uh, like a child in, uh, with a spina bifida and they're gonna be in a wheelchair their whole rest of their life, trying to make them reevaluate every single year and that like they're ever gonna get out of the wheelchair. I mean, this is a lifelong illness. [1:55:47] It's ridiculous at how it's been. It gets better for a while, and then we have to go after them again. [1:55:53] I thank you for recognizing that challenge that parents face. It is, it is one of the biggest hurdles. And in fact, when we lose services, sometimes getting through the network of, um, reaching a human being to discuss that and help resolve the issue is impossible. In fact, m- in my case, I have been four months without services due to a clerical error that was admitted by the staff, and I have no recourse because nobody will give me a phone number or an email of any individual to resolve the issue. [1:56:23] I doubt that I have it now. I haven't dealt with this for f- a couple, three, four years, and so, okay. So... [1:56:30] I would just add to that the potential idea policy resolve around adding PWS as an automatic qualifier within the waiver system is, is something that could be done. [1:56:41] Okay. Is that a state thing that needs to be done on our state- [1:56:44] No, on the state level [1:56:44] ... on the state level? Okay. What kind of a response have you gotten? [1:56:49] Uh, well, we, last, last session, we had, had some commitments and some excitement. I think with the impending cuts following the November election, the OB3 or the One Big Beautiful Bill, the cuts that are coming down the, the pike at Medicaid took that reality sort of off the table, but that's something that I would love for us to revisit. [1:57:06] Oh, okay. You wanted it, uh, uh, put on as a perma- as a where it would be permanently, uh, available for help, but it's a federal level thing you needed done. [1:57:16] No, the state, the way that the waivers are, uh, applied and then given essentially with a PWS diagnosis- [1:57:24] Okay [1:57:25] ... you would be an automatic qualifier. [1:57:26] Okay. And then, then depends on, um, what kind of funds would be available depending on what the, the bill did. I got it now. [1:57:34] Great. [1:57:34] Okay. [1:57:35] Um, so hi, everyone. I'm Karen Hinckley. I'm the government affairs director with Solino Therapeutics. I'll try to keep it really short. Thank you for your time today. Um, Solino, we're a small biotech company based out of Redwood City, California, and we're dedicated to developing no- novel therapies for rare diseases. In March of last year, Solino secured FDA approval for the first drug to treat hyperphagia in PWS, uh, for ages four and over. So we're, we're thrilled to, to have this come to fruition, uh, for the community. I think I'm the luckiest person in the world as it comes to being able to work with this incredible community. [1:58:08] Um, and we're deeply connect- committed to ongoing research in this space as well. Just committed another five million to looking into, um, grants for genetic research aimed at identifying a cure for PWS. Beyond research, we support state policy efforts to ensure access to rare disease therapies. Ninety-f- five percent of rare diseases do not have an approved therapeutic option. So I hope to continue to be a partner with this body, to be a resource, and I just want to thank you again and deeply appreciate these opportunities to raise awareness and education around PWS. [1:58:41] Thank you. [1:58:48] So, um, thank you for allowing us the opportunity to speak today. My name is Lisa Matiszak, and I am the mother to a young adult with Prader-Willi syndrome. I'm also the president of the, um, Georgia Association for Prader-Willi Syndrome and a researcher for the P- Foundation for Prader-Willi Research. So these roles have provided me with an in-depth understanding of the devastating and life-threatening challenges posed by the condition, particularly the relentless food-seeking behaviors that define it. Every moment of a person's life with PWS revolves around food security and the need to prevent catastrophic outcomes, and I can't emphasize that enough. [1:59:22] Uh, PWS, as you heard from Dr. Gambill, is a rare complex genetic disorder. It profoundly i- impacts those who live with it and their families. Uh, the hallmark feature of hyperphagia, an unrelenting and life-threatening drive to eat, um, this biological compulsion results in individuals feeling as though they are starving, no matter how much they eat. So strict supervision, because of this insatiable hunger, is critical to prevent harm or even death. Uh, for individuals with food, PWS... Or individuals with PWS, food, which is a basic human necessity we all rely on, becomes the greatest threat to their lives. [1:59:57] Um, I'm gonna share with you a little bit of, uh, my experience, um, make myself a little vulnerable here, and let you know that, um, you know, I, I have a son with PWS, and like every person with PWS, his lived experience is unique. He's a person who graduated from high school with honors. He earned a Hope Scholarship and attends college, but not in the way you might imagine, 'cause he cannot be on campus because he cannot be unsupervised. He does this remotely from the safety of our home with every bit of food under lock and camera. My adult son cannot have a cellphone, and he requires a computer with parental controls, and he's not afforded the freedom to visit unapproved websites, make purchases, or send messages because those opportunities invite danger in a world where food can be ordered online and delivered to your home. [2:00:41] We know the danger of this firsthand when hundreds of dollars of food arrived at our door purchased online with a stolen credit card. Intellectually, he knows this is wrong, and emotionally, he knows he shouldn't do it. Biologically, he is driven beyond his control, and he cannot stop. Academic suc- success and intellectual abilities will never override these hardwired biological signals which place him in constant jeopardy. As parents, we are exhausted from the intensity of caregiving and advocating. For almost 20 years, we've remained hypervigilant around food. [2:01:13] We avoid family gatherings and social outings because food isn't secure. School was never safe. We live in isolation with no respite. My son has limited social opportunities, and that is only with direct parental oversi- oversight. We have struggled to maintain Medicaid coverage, facing policy termination multiple times, most recently due to a clerical error that remains unresolved four months later, and has resulted in a loss of critical care and access to medications. PWS families are in desperate need of services in Georgia and to ensure the best quality of life, a- and the system is flawed. [2:01:49] Um, some examples of change that would be impactful are, are, uh, allowing providers and group homes to secure and lock food in kitchens for safety, provide access to respite so our children can go into the community, provide access to Now Comp waivers, ensure families don't lose access to critical care services like Katie Beckett, and when mistakes occur, have a defined system in place to resolve these issues. In the span of a day, where the scant few hours of sleep we get is often our only respite, the time it takes for a special needs parent to advocate for basic services and supports means time taken away from critical caregiving. [2:02:23] These supports are essential to ensure a life of dignity, safety, and opportunity for individuals like my son and others with PWS. So I urge this committee to consider the unique needs of individuals when evaluating how you can support our community. By recognizing the realities of PWS, you can ensure that individuals with this condition have the support necessary to lead fulfilling lives while minimizing the risks posed by their genetic disorder. If you have any questions, I welcome them. [2:02:50] I do have. You're still off our Medicaid program? [2:02:53] I am no longer on your Medicaid program due to a cleric- clerical error. [2:02:57] Okay. Um, can you call my office tomorrow and give me name, you know, how I'd look it up, and let me see if I can do something to help. [2:03:08] Yes, ma'am. [2:03:09] I will tell all of you, I, I do n- I, uh, I don't like blowing my own horn, but I'm gonna do it this way. I, I was the outstanding legislator of the year for rare diseases not too many years ago. It's because I care so deeply about this. Um, I don't usually keep things. It is one that I keep in my office, the award. Uh, so I ju- And, and right here, the ones that are still here, and lots of us, Cannon and all, you know, you got a bunch of legislators. [2:03:39] We may be a small number left, but we're a number that really care and, and speak out a lot for children that have these rare diseases, because we understand how hard it is, how limited the funds are. So it, I cannot solve every problem. My name is Sharon Cooper. You can find me, find my office out on the website. Look under House, the, you know, government stuff, and get my phone number. I can try to help you on things like our Medicaid being down. [2:04:09] I will. If you'll just- [2:04:10] I appreciate that. [2:04:11] But, um- [2:04:11] And if I may, one additional request then. There is another family member in this audience that also had their Medicaid terminated. They are told that it is not due to the clerical error that occurred recently, as of this weekend. Uh, they're being told that their paperwork was lost, which they have proof that it was turned in and was acknowledged as turned in, yet this individual has also lost access to care. [2:04:33] Did they resubmit it? [2:04:35] It was submitted in December. [2:04:37] Resubmitted. [2:04:38] Submitted for their resubmission for the renewal in December. [2:04:41] Okay, but I mean, have they, now that they know it's lost, did they put it in again? [2:04:45] No, that was, this is the information that came through yesterday. [2:04:50] Okay. Thank you. Yeah, I mean, whoever that, um, individual is, you, you know, give me the information and call my office and let me see if I, what I can do. Thank you. I, and I can't always solve all the problems, but I can try. Go ahead. And I'll get- Wh- Some of these other guys to help me out and call too and get used to it if I ... We'll, we'll tag-team 'em. Ain't going to the table. Yeah, dude. Yeah, he's got a villain reserve. Well, he probably just wants to come see us. Hi. Yes. I'm Jessica McCabe and we have a six, my six-year-old son has Tu- um, Prader-Willi, and this is his brother, Cooper. [2:05:23] Hi, Cooper. Oh, okay. Hi. Hi, welcome. Go ahead and speak. You got your paper? I bet you're a good big brother. Mm-hmm. He can't say much. Hi. So you can sit at the table. Yeah, you can sit at the table. You can sit at the table. You want to sit at the table? Come on. There you go. Is that what you wanted to do? You're welcome there. That's awesome. Do you have something? What, what is your name? Hi. My name is Cooper. I am eight years old, and my brother has Prader-Willi syndrome, as you probably know. [2:05:55] One thing I like about him is that he's happy no matter what. Like, if we said, "Okay, we're gonna throw you in the garbage can," he's like, "Does the garbage can have dirt in it?" [2:06:09] One thing that is hard about him is that he only listens to certain songs. He only plays with certain toys. Like, if we said, "Okay, you're gonna play with the garbage truck," he's like, "But I only wanna play with the dump truck right now," which is kinda strange. My hope for him is that he can overcome the disadvantages of having Prader-Willi. I hope Juju and everybody else who has Prader-Willi gets the services they need. Wait a minute. Wait a minute, Cooper. Do we have questions for Cooper? I wanna know how old you are. [2:06:40] Didn't I already say that? [2:06:46] Okay. Say it again. Cooper, say it again, buddy. I am eight years old. You're eight years old. Well, and you certainly are a good advocate for your, um, brother. Hang on. I think Representative Sharper has a question for you. All right. Thank you so much. Uh, what would like, what would you like to be as you get older? I don't quite know that yet. All right. Well, you have plenty of time, but thank you for being here and supporting your brother and everybody. I think, Cooper, that we are very short of physicians and people that understand rare diseases, so can I put a plug in for you studying really, really hard in school? [2:07:25] 'Cause you look really smart and, and you speak so well, you must be pretty smart, and maybe that you grow up and be a physician, and that w- can help us learn more about these diseases. Will you put, will you keep that in mind? Yeah. And I wanna tell you, you have an awfully good name. My godchild is named Cooper, and he's named Cooper after me. Thank goodness he didn't call him Sharon. Because that's my first name, and Cooper's my last name, so you were in, you got a plus in my book right off the bat, right? Okay. [2:07:56] Thank you very much. Anybody else? No? We got it? Okay. Come and see us again sometime. Okay. Okay. In fact, when you get to- I was going to do that. Also, one more thing that, just to share some information, kids with Prader-Willi are actually not allowed to have sugar, because if they eat too much- [2:08:18] They will never stop being hungry. [2:08:22] Yeah. Okay. Thank you. [2:08:25] Good job. [2:08:31] Okay. [2:08:31] I don't know what else to say. [2:08:34] I, I don't know what you can say after that. You went on that stage. [2:08:37] I know. This, my son's pretty great. I, um, I had a whole speech prepared, but I know we're getting to the end of time, and, um, my main goal was to talk about the importance of early intervention services, which are truly impossible if we don't, um, make it an automatic qualifier, Prader-Willi, an automatic qualifier for Katie Beckett, because the services are so expensive. Within the first year of Julius's life, um, he had to see eight specialists. He was given, he had to undergo three surgeries, four sleep studies. Um, he's on a daily growth hormone, which, um, is more than a thousand dollars per month. [2:09:10] Um, we estimate now that we have Katie Beckett, which was denied twice, um, that his, that his, that it, Katie Beckett saves us over $30,000 a year, which makes it possible for us to save money for his future. Although, as a physician myself, we were able to afford the services that he needed and optimize his care that first year, many families do not have that opportunity. They don't have the financial resources or secondary insurance that will cover everything that they need, and it is critical that in the first year of life when they are floppy, hypotonic, and unable to eat, that they have insurance benefits so that they can get the care that they need. [2:09:48] And we do know that early intervention services improve the developmental, cognitive, and behavioral outcomes of those with special needs, but in particular, for those with Prader-Willi. As you can see, my six-year-old is doing really well, and I really credit that he got so many therapies, um, medical appointments, medications, and everything that first and second year of life. So if we could do anything to make it possible for these children where their families are already struggling with insurmountable medical, um, um, appointments and care to make this, that one thing easier so that they can get the services they need early. [2:10:25] And they don't, um, these children don't qualify for our Medicaid? [2:10:31] Um- [2:10:31] I mean, people that are not in your circumstances, would they- [2:10:36] It is not an automatic qualifier. Um, we personally, at, somebody who knows the medical system well, we were denied twice and had to spend $1,500 to hire an advocate in order to get it approved. [2:10:46] Oh, but that's with the Katie Beckett? [2:10:48] Yes. [2:10:48] I was wondering about, there's no special thing where they can be put on Medicaid on our children's program or anything to help out in that first year of life? Nothing, nobody's- [2:10:59] Mm-mm. [2:10:59] If that's anything... Okay. About the, uh, we test for, I don't know, 20-something things at birth for genetic diseases. Is there a way to test for this, or only do we begin to find it when they exhibit symptoms? [2:11:16] Um, there are three types of Prader-Willi, um, t- three genetic mechanisms for Prader-Willi. The specific type that Julius has is called uniparental disomy. It is not something that can be picked up by current genetic tests. So we were shocked and devastated at birth and did not know it was coming. [2:11:30] Okay, so we just have to wait for, on any of them, wait for the- [2:11:35] I mean, so- [2:11:35] The- [2:11:35] ... it's, it's not part of the newborn screening. Uh- [2:11:38] I mean- [2:11:38] It may be at some point, uh, because we're always adding new things to- [2:11:42] Right [2:11:42] ... newborn screening, as you know. Uh, but right now, Prader-Willi is not something that is on the docket right now for, uh, newborn screening, but it may be. [2:11:52] Uh, okay. Have, have you, has the association or anybody... We had, we set up a committee for that so that you didn't have to come to the legislator, legislature first, 'cause that was hit and miss. Has anybody approached that committee or anybody- [2:12:06] That's a good question. Uh, there's one of the other physicians in genetics at Emory is part of that committee, and I'm not sure. Have you guys- [2:12:12] If, if it's- [2:12:13] Let's say. [2:12:13] Huh? [2:12:14] So if I understand your question, and hopefully I'm answering quickly, so the Foundation for Prader-Willi Research has funded a, um, way to test infants at birth, and it's being trialed at, uh, uh, in North Carolina. [2:12:27] Okay. [2:12:27] But it has to go through the whole process of being approved by the RUSP and all of that. And, and as you know, the average time it takes to get approved there is 10 years. So it's- [2:12:36] Okay [2:12:36] ... not in the near future that PWS will be added to that panel. [2:12:40] Okay. [2:12:41] But hopefully someday. [2:12:42] Thank you. Okay. Do we have somebody else that wanted to... Did I see somebody? Ah. [2:12:47] Yes, ma'am. [2:12:48] There we go. [2:12:49] Good afternoon, Chair Lady and legislators. I am Sharon J. Cooper, and I have Prader-Willi syndrome. When I was first diagnosed with PWS at the age of 12, life expectancy [2:13:06] was in, was in the early 20s. I am now 52 years old and have a com- Medicaid waiver. I live in an apartment in Roswell, Georgia, with two roommates, and we have support staff through our provider and community. I am on the National Prader-Willi Syndrome Adult Advisory Board. We would like for people in our cities where we are living, there are some challenges to be aware of Prader-Willi syndrome, because there are some challenges and some good things also. [2:13:49] I have challenges with insulin resistance, bone density, uh, constipation, daytime sleepiness, and constant hunger. There is a new medication from Cisleno to help persons with PWS con- control hunger. Thank you, Cisleno. I have a good doc- I have good doctors at EM, Medical Center and University of Florida, and I am on a 900 calorie diet, day diet. [2:14:22] Prescribed by doctor, by an international pwS specialist, Dr. Jennifer Miller. I have good support staff, parents, and family members who love me so much to give me healthy meals, and I have eyes on me at all times, especially when I am in the kitchen area. Over time, my weight has dropped from 189 to, to 110 pounds. [2:14:54] Living with pwS is hard, but with good support, we can c- overcome our challenges, and we can live. Some people with pwS do not have Katie Beckett or medical waiver, so if we can, please unlock the medical waiver. That would help them out to thrive and live. We need that. Thank you for this, giving me this opportunity. [2:15:26] Thank you. Wait, wait, wait, wait, wait, wait, wait, wait, Ms. Cooper. You don't need to be thanking us. Thank you for coming to talk to us, and for your tenacity as a patient with this illness, um, and dropping all that weight. I know that was really hard to do, uh, with the constant hunger, so congratulations. [2:15:49] Thank you. [2:15:49] And I know you get around a lot better with that. And I will say, you know, a lot of times people think government can do everything. We can't. Sometimes we just have to get out of the way, and I cannot tell you, to see the families here, I wish every child that has any kind of disability of any kind has the kind of support that you all, from where all you came, are showing to us. I mean, it gives me chill bumps, because it's not always that way. [2:16:20] So thank you from the depths of my heart. I got people sitting here from CHOA that are our great partners in trying to help people, and just know that you are appreciated, and we've heard you and try to maybe make you know that we are accessible, uh, and we'll try to help where we can help, um, and that your message and that your message, Ms. Cooper, have not gone unnoticed or on deaf ears, 'cause they haven't. [2:16:52] So thank you very much, and where do you live? [2:16:58] Mom? [2:16:59] Where's Mom? Hey, Mom. Where do you live, darling? Her apartment's in Roswell, Georgia. In Roswell? Okay. In Roswell, Georgia. That's close to my district. I butt up to the, to the Roswell area. Okay. Well, thank you very much for coming and for your testimony. Anybody else want to say anything? Okay. And for giving all these other mothers and dads that have these young children, you also give them hope of the fact that their children can grow up to be your age, and that hopefully over that time and not at great length, that we'll be coming up with medications that can help and other ways to help their children. [2:17:40] So thank you. You can set, for setting that example, for coming. [2:17:44] You're welcome. [2:17:44] And thanks, Mom, for getting her here and being with her. [2:17:50] Can we need to move past that? Okay. Did somebody else want to- [2:17:55] I wanted to just add one more thing, if I may be so bold. Um, one of the things I pointed out in my testimony was about the differences in individuals with PWS, and one of the barriers for, uh, qualifying for waivers for some of our adults is the IQ. And I hope I illustrated to you that that intellectual quotient number is simply a number. It does not give due, um, uh... It, it really doesn't define truly what the lived experience with PWS is. [2:18:25] So a number of our families may be excluded from receiving those supports that are necessary simply because of their intellectual achievements, which really isn't reflective of their needs. So I just want to mention that to you as well. [2:18:40] Director, do you have something? [2:18:42] Trustee Hill. [2:18:42] Oh, sorry. [2:18:43] No, you're good. Um, just more, a couple comments that I've, I jotted down. If, if you're here today for PS, PWS Day, could you raise your hand? [2:18:52] That's great. [2:18:53] That is amazing. That is... You guys should be so... I, I've... Rarely do we see a room for one cause of this many people. Kudos, yes, kudos to yourself. Give yourself a round of applause. [2:19:09] If you are in this room, please know or find out who your state house rep, who your state senator is. We are accessible. We're more than likely here roaming around somewhere. Find us, because I need y'all to help advocate, 'cause we are passionate about this subject. So I, I'll share with you, uh, we have a middle, middle, our middle son, Chase, which we should have called him Sit, um, but Chase, um, uh, was born. He was blessed with, with Down syndrome 21, uh, or trisomy 21, uh, Down syndrome. And so, uh, he has been a blessing in our lives. [2:19:39] Uh, but a lot of the stories that you were sharing I can relate to. I was, I was sworn in in the House here, and, uh, the first thing that Chase did, he sat in the gallery, he took his shoe off and threw it over the gallery onto the House floor. Um, so- ... just husbands and wives, love on each other, you know, I... 'Cause you're so, you're focused on the child, but, but you go through a lot together. Focus on each other. Some of these issues with Medicaid and Katie Beckett just make me wanna pull my hair out. Um, please get those to us. We are not miracle workers, but our name and title do mean something, and we can help expedite things for you. [2:20:13] Um, I apologize to all the parents out there. DCH's SNAFU over the weekend caused a lot of fear and frustration. I've been told that's been resolved. It has... If it has not been, please come to me. Um, but yes, I am blessed because I, I am married. I'll- my wife is a special needs attorney and so she's a lot smarter than I am, um, and we can help you guys navigate this stuff. But please know I am praying for you, I am a voice for you, I'm so proud of you. Thank you for your courage and keep at it. You've got champions here working for you. [2:20:44] So God bless you. Thank you for what you do. [2:20:46] Thank you. [2:20:50] Representative Sharper. [2:20:51] Uh, thank you, Chairwoman. Uh, I just wanna make one r- possible recommendation, and it doesn't have to be the entire group coming back, but I think that at some point before this session is over, that we have a few of the others come and explain more, uh, to the other legislators that can be here so they can be a little bit more aware. [2:21:11] Uh, yeah. When I, when I planned for you to come and there was another group, and I think that if, and if you're with hemophilia, Helen just sent us a note and said they might wanna come back. I apologize to you for that. When this was scheduled, there were no bills ready, and then all of a sudden, there are all these bills ready, and I got legislators breathing down my throat besides mine saying, "Let's get them out, let's get them out. We're moving, we're moving. Can we get them out of your committee?" And discussions go to just didn't realize it's gonna take so long and so I, you know, I really apologize that. [2:21:44] And I wanna tell you, that's the first story I've heard about the shoe. I missed the shoe. And he was up in the gallery? Well, I'll tell you a little story. Years ago, we often are given stuff by people, and back in the more, um, agriculture days, they passed out a lot of sweet potatoes one year to all the legislators. They-- We've gotten peach trees. We've gotten all sorts of things. And it got late in the night, and there was a lot more drinking that went on during session than there is now, and apparently somebody got sauced up in the gallery and decided he didn't like what was going on, and a sweet potato came whizzing down. [2:22:18] And all of a sudden, there were sweet potatoes, 'cause we didn't have office. They didn't have offices then. Their office was their desk on the floor. So they had their sweet potatoes, so there was sweet potatoes going whizzing back up in the gallery. So I guess he just was inspired by something that you throw something from the gallery. So, um, there's a lot of history with Georgia, and all-- not all of it's not funny. I wanna give one more piece of advice. Okay. Yeah. [2:22:42] Just one more piece of advice. Um, you guys are a big group, which is great, um, but you have a lot of different needs. If you could coalesce, 'cause we're, we're super busy. Like, here are my top three things that would be life-changing for us, either through a bill or through DCH or DBHDD, that then helps us attack, you know. Uh, so, so get to-- I, I assume you have association of some kind. [2:23:02] So I'm the president of the Georgia Association for Prader-Willi Syndrome, and a number of our board members are here today as well. So yes, we would love the opportunity to present to you what our top three needs are. And if there was somebody that was willing to champion it, champion that opportunity to pass a bill that would benefit not only our community, but likely others with disabilities, we, we would greatly appreciate that. [2:23:25] Okay. Find me afterwards. [2:23:26] Well, I know that- [2:23:27] It's- [2:23:28] ... thanks [2:23:28] ... things I- I'm a-- You know, since you don't have something you're specifically asking for this time, you know, when we're out of session, and we'll be out of session un- unless it changes April 2nd, uh, we're not out until... Now, it is election year, so you might, your, your senator or your house member may have somebody running against them. But try to get to know them then. You know, ask to meet with a cup of coffee and take your youngster with you and, um, you'll get different responses. We, we are a citizen legislatures, and there's some of us that are nicer than others. [2:24:02] No, I'm teasing. You know? But it may not-- I- I- I'm in healthcare, so this is my whole life I've been in healthcare. And other people, like Representative Cannon does a lot of stuff and... You're a dual now, aren't you? And so, you know, and Representative Schroeder did, uh, emergency, uh, transportation and MIT and... Do you, what, what's your background in health? Yeah. You're just a- Just a bit ... recipient? Yes, ma'am. Okay. I'm And Scott has a child. There may be others that this is just not their things. If you don't get the response you want, there's always us. [2:24:34] You know? And but, you know, try to get to meet them personally and buy them a cup of coffee and, you know, say, "I'd like to talk to you. I'd like to meet you." And when we're out of session because then we have more time and you don't get to really mess up like today. Uh, but we'll talk to you anytime and then if you don't get the response you want from them, call one of us and we'll try to help you get what you need. So, um, because we're all different and, you know, a farmer down in South Georgia, although our farmers are really nice, if they have no experience with this, they, it may be above their understanding. [2:25:09] Did I say that? Fair. I did. Our farmers are really smart. I don't understand how things grow either. Okay. So that's just a little advice from us on doing things. Is there anybody else that wants to? Parents are... We'll be here a minute. I want-- I, I'd like to have a picture with Cooper and his brother and anybody else that wants me to ruin their picture, and I bet you're the same way, to take home with you and I don't know about anything else. Why don't you put your... In like that. So Representative Cannon. [2:25:39] In like that. So I like the kids and I like putting my pictures out on my, um, web and that kind of thing. So are we finished except for this? What's this? Intuity. What about us? [2:26:31] Who is it? Who am I announcing this to? [2:26:37] Oh, well send out a thing. So somebody's inviting us to... Oh. [2:26:41] We're still here. Yeah. Are we allowed to approach the- [2:26:45] Sure. Go ahead.