House Public and Community Health Committee, February 17, 2026

Transcript

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1. 0:15:38

   Am I, am I on?

2. 0:15:40

   Mm-hmm.

3. 0:15:41

   Okay. Hello, everybody. If you're not one of our members, then, then you may wonder why we're waiting, and it's because we don't have a quorum. I've already reduced the quorum from last year or year before last, and this is a bit unusual, uh, to start having this kind of a backup. Uh, usually, it doesn't start until closer to crossover, the, or after crossover that we back up like this. But we're waiting for a couple more people and trying to round them up so we have a quorum, so we can start.

4. 0:16:17

   Can we start now?

5. 0:16:17

   And I apologize, and we're already starting late.

6. 0:16:20

   Can we start the presentation?

7. 0:16:22

   I, well, I hate to do that. I want people to see it. I mean, we may. Daddy.

8. 0:16:26

   The, the, the two we waiting on, you, well, you got six that won't see it now.

9. 0:16:31

   Okay. Daddy, hang on. Don't push. We'll give them a couple more min- have we made

10. 0:17:10

    everybody that's come, that has come and got put off last time and now back down, like, an hour, and now it's running later. Uh, it's just one of the things that happens. But I could say that the most important people are here already. And so if we get started, we'll just add. And the nice thing about it is that this is recorded. It does go out live. Um, and we do have people that listen to it. So, uh, at least you're not just reaching us. It's reaching other people.

11. 0:17:43

    You, you running down Crocus?

12. 0:18:10

    Uh, and we're gonna do the presentation first, finally. Uh, we have the Hemophilia of Georgia, and I'll let you direct and who, you know, what you wanna say, and if you have other people that wanna speak on the issue, and, uh, we'll get started.

13. 0:18:27

    I appreciate that, Chairwoman. Uh, I'm Michelle Condie. I'm here representing Hemophilia of Georgia. I'm the Senior Director of Advocacy. We are fine with everyone who's in this room, so we're happy to have your attention to introduce/reintroduce HOG and the wonderful things that we do, and really appreciative of the time that you've given us. I have a little presentation just to give you a little bit of background about who we are, what it is that we do. We're a nonprofit. We've been around for about fifty-three years now. Um, and we de- are dedicated to serving people with bleeding disorders and their families here in Georgia.

14. 0:19:02

    We exist so that people affected by bleeding disorders live as normally and productively as possible. I know that some of you are already familiar with hemophilia, with bleeding disorders in general, but just to give a background to those who might not be familiar, it's generally a hereditary genetic disorder. Um, I know we have our friends with sickle cell here today, and so just to make that distinction, there are blood disorders and bleeding disorders. Bleeding disorders like hemophilia, uh, it's an issue with the clotting, not the blood itself. So someone with hemophilia will bleed longer.

15. 0:19:34

    It's not that they'll bleed faster and more differently. It's just that their body is unable to produce that clotting factor. Uh, a lot of the times, I like to use just, um, to visualize it, there are a set of dominoes, and when you have that set that you're placing them to fall, what's usually wrong with someone with hemophilia is that they're missing one of the dominoes in that line. And so to complete the sequence, you need to add in the factor that they're missing in order for them to finish clotting and to be able to be okay.

16. 0:20:07

    So, uh, in the United States, we have over thirty-three thousand patients with hemophilia. Hemophilia of Georgia takes care of and represents two thousand of those patients here in the state. We-- It's mostly males that carry hemophilia, but females can also have it. And we also see a lot of female patients with von Willebrand, which a third of those cases are spontaneous, too. So it's not just a genetic disorder. It's something that you can have a spontaneous mutation in your genes with it, too. There's no cure yet, but-

17. 0:20:38

    May I ask a question?

18. 0:20:39

    Yeah, absolutely.

19. 0:20:39

    I'm sorry.

20. 0:20:39

    Please.

21. 0:20:40

    I'm having trouble hearing. If you can't tell, everybody, I have a terrible cold, and I can't. It goes to my ears. A- are you saying you can have a spontaneous-- I don't-- What did you say about the spontaneous?

22. 0:20:49

    Yeah. So there can be a spontaneous mutation in the genes. So somebody that they don't have a genetic background, like their family, grandmother, anyone did not have the, the traits for hemophilia, and then they just develop it. So it's just-

23. 0:21:07

    Okay. Would that be present at birth then? They-

24. 0:21:09

    Yes, it's present at birth

25. 0:21:10

    ... it would show up at birth.

26. 0:21:10

    Mm-hmm.

27. 0:21:11

    Okay.

28. 0:21:11

    There are a few cases where somebody can develop a bleeding disorder, but it's very, very, more rare than hemophilia, and it's usually to do when they're getting, like, kinda chemo treatments or something like that.

29. 0:21:22

    Okay. Thank you.

30. 0:21:23

    Absolutely. Yeah. Uh, am I a little tinny to you?

31. 0:21:27

    Sorry about that.

32. 0:21:27

    May I ask a question, do you guys-- Oh, uh, Representative Reese.

33. 0:21:31

    Thank, thank you, Madam Chair. Question, I'm just curious, why is it more prevalent in males? Do we know what it is that makes that the case?

34. 0:21:39

    So it's carried ax-- on the X factor-

35. 0:21:42

    Mm-hmm

36. 0:21:42

    ... um, on the X chromosome. Sorry, the chromosome. So you have the X and Y, and it's on the X. And so, uh, women have two, males only have one, and so when the one that's affected would, uh, be dominant in them, and they would get the one that's, uh, damaged, or that's missing the factor. Sorry.

37. 0:22:00

    Oh, okay. Thank you.

38. 0:22:01

    Yeah. Um, and just to say, there's no cure yet, but this is one of the communities that I'm obviously very proud to represent, but I'm also personally from a background with a family with bleeding disorders. My brother is 30. He has hemophilia. When he was born, it was still transfusions were the option to be able to treat somebody. Then it started being to the replacement factor, and he would infuse three times a week, which you can imagine for active young boys, that is a nightmare.

39. 0:22:33

    It's to the point now he's able to take a shot he sticks in his belly once a month, and he lives like he doesn't have hemophilia. Uh, right now we also have the options of gene therapy present, and so our community has come a very long way, um, and it's amazing the things that our kids, our families are able to do now that previously it was completely unheard of.

40. 0:22:56

    Are we, are we, are we talking on gene therapy, uh, pre-birth, in uterine?

41. 0:23:01

    No.

42. 0:23:02

    Or later on?

43. 0:23:03

    Later on. Yeah. Those are the options available, but obviously that's something that we are, fingers crossed, looking forward to.

44. 0:23:10

    Okay.

45. 0:23:11

    So just to give you all a little bit of context about how HOG operates, how we are able to do what we do, HOG is a 340B covered entity, so that lets us use our nonprofit pharmacy to really reduce that financial burden on our patients, and so we're able to deliver infusion supplies and the actual factor that our patients are, uh, needing every time. Uh, as you can imagine, a rare disease, something like hemophilia that seems kinda complicated, our patients, their cost of treatment and care annually, it's between 300 and 500,000, and that's for a good year.

46. 0:23:48

    That's a year where absolutely nothing happens, and you're just living your life because you are bleeding when you're moving, your joints are bleeding. So a bad year, easily a million dollars or more. Um, we've had patients here in Georgia that have racked up $2 million bills within a week, um, in the hospital stay. So that's where HOG tries to come in. That pharmacy revenue that we get, we try to put it back into the community, and so we have a few different programs that I'll make sure to cover in just a second.

47. 0:24:17

    Are-

48. 0:24:18

    Yeah.

49. 0:24:18

    Are these patients eligible for Medicaid dis- or disability here in Georgia?

50. 0:24:24

    They're not eligible for disability. Some of them are Medicaid eligible, but, uh, most of them have some kind of private insurance that we help to make sure that they're on and enrolled in. That's been the number one goal for HOG, just to make sure every patient we have has some sort of healthcare coverage.

51. 0:24:40

    Thank you.

52. 0:24:41

    Yeah. And this is just a little bit more about, um, our participation in 340B. We're one of the original participants in the program. Um, about 100 out of the 140 hemophilia treatment centers in the country are members of the program. Um, and it really allows us to operate, do the work, and cover the cost of the patients that need it. These are just some of the programs that we participate in. Uh, we do advocacy, community fundraising events, our hemophilia treatment centers. You've probably seen a big sign on Emory with the Hemophilia of Georgia Bleeding Disorder, uh, Center.

53. 0:25:16

    We have our outreach nursing, our pharmacy, uh, educational family programs, the social work and financial aid, and research. And research and our advocacy, they're separately funded. So that usually comes from private fundraising that we do and not our 340B dollars. So just some of the examples of how we try to make sure that our patients are covered, how we're covering their costs. We have, um, four different programs that are really focused on that. So we have the Client Assistance Program that's funded by HOG, administered by HOG, and this is for our patients that are insured.

54. 0:25:51

    And so it's to help them with deductibles, co-payments, and their, you know, obviously, uh, eligibility requirements, so 500, uh, federal poverty line and higher. We have the IPAP program, so that's our Insurance Premium Assistance Program, again, funded by HOG, administered by HOG, and that's for our uninsured patients. So that's where we're covering those who may not have coverage yet, although our social workers, part of what they do when they're doing their outreach is to go to the families, work with them, find the right kind of coverage for them.

55. 0:26:23

    We also have our Patient Emergency Assistance Program, which again, HOG funded, administered by HOG. It's needs-based, economic hardship. This covers everything from rent, mortgage, utilities, dental care, clinic expenses. We make sure that our patients are at the Hemophilia Treatment Center at least twice a year, each patient. And so on those visits, they have the full comprehensive care visit covered by HOG. So they are seeing their hematologist, the nurse, the social worker, a dental assistant, physical therapist, and any mental health needs that they might have are covered there as well.

56. 0:27:00

    So if there are medical expenses related to their bleeding disorder, HOG also covers that for them, uh, any hotel lodging that they might need for these HTC visits, as well as their medic alerts, scholarships, anything to help the whole person. Uh, that's something that HOG helps with. This is one program we have that is not fully HOG funded, but it is administered by HOG. Um, it is the Department of Public Health gives HOG a funding for $400,000 a year Incredibly grateful because it helps us do a lot of work.

57. 0:27:34

    Um, so you can imagine, as I said, the expenses of a patient are incredibly high. This lasts at maximum three months, and then the money is completely used up from that fund. Um, this is for the annual assistance for insurance premiums, deductibles, and co-pays, and so it allows us to use, for those three months, the money there, but it also allows us to step in and then cover the rest of those expenses for the rest of the year for the patients that might need it.

58. 0:28:03

    So, HoG works with a few different hemophilia treatment centers in the state. We have Hemophilia Georgia Center for Bleeding and Clotting Disorders of Emory. In Augusta, we have the Augusta University Pediatric Hemophilia Treatment Center and Augusta University Center for Blood Disorders for adults. And in Savannah, we have the Willett Children's Hemophilia Treatment Center. Uh, sorry, I thought you had a question. That, yeah, the, the, the map you show- Yes ... it sure leaves a lot of our state uncovered.

59. 0:28:33

    Absolutely. Especially down, I take that's Macon in the middle with the gray. So you'll actually see here, too, the two gray dots that we have there, um, they're not listed there, but those are our relatively new hybrid s- uh, telehealth centers right now. Yeah. Um, it's to try to start covering those pieces of the state that are not covered. So we've been able to, like I said, we pay for the expenses that our patients have if they need to take off, travel to their HTC 'cause they're required to have those appointments by their insurance and by the assistance we provide.

60. 0:29:09

    So we step in, we pay for hotel, uh, reimbursement for travel, taxi if they need it for them to be able to travel there. It's not enough, though, because when you are a patient, you're also a whole person, and that means they have childcare, they have work, and taking that time off is just not feasible for a lot of patients. So in 2021, we opened our c- hybrid clinic in Savannah, and so that brought back over 200 patients just within the first two years that they had not been getting any sort of treatment.

61. 0:29:40

    They hadn't been seen by a hematologist. Uh, a lot of these patients had gone decades without any sort of care. We have one young man that went 22 years without seeing a hematologist, without seeing any doctor. He had amassed million-dollar bills in the hospital almost on an annual basis because if he couldn't go see a hematologist to treat his bleeding disorder, he was going to the emergency room. And obviously his story is not unique. It's not unusual, but it is something that we wanted to resolve. Um, he is back in our care now, and he has been able to get fully compliant with his medication, with his annual visits.

62. 0:30:18

    He is doing extremely well now. He's totally disabled because of the past, um, time that he was left without treatment, but he has a full-time job now, and he's got, like, full-time treatment, um, and insurance and everything, um, unlike he did before, so we were able to bring him back into our fold of care. Um, it's- We've lit, we've lit up here. Well, I guess- ... no, just one so far. Okay, you were just writing other things. Yes. Representative O'Steen. O'Steen. Thank you, Chair. I, I have two quick questions. Yes. It's, it's been a hot minute since I've practiced nursing and never in, in, uh, newborn, and remind me, do we test for that as- I believe it's not on the screening list.

63. 0:30:59

    Um, it's pretty clear, uh, depending on the factor level that a patient might have when they have hemophilia, um, just because, you know, you'll see signs pretty quickly with the bruising, um, and it's something that we want to highlight. We have been bringing it to the hospitals and everything. Um, generally it's found pretty quickly if somebody-- We have, um... Sorry about that. By quickly, do you mean newborn it's found usually? Yeah, it's usually in the newborn. Um- Okay ... and it's depending on their level, um, 'cause we have severe, moderate, and mild.

64. 0:31:30

    Um, sometimes a mild patient it'll be until they're, like, a toddler, and then they find out they have hemophilia. But usually if it's, like, a severe or moderate case they find out when they're a newborn. Okay. I have one more question, Chair. Are there any plans on getting some access down to South Georgia where I live? Absolutely. Great. Yes. Great. Um, so we've been working very closely with our friends in DC about this as well. These two telehealth sites have been extremely successful. We are beyond happy with what it's been able to accomplish for our patients.

65. 0:32:03

    Um, I'm actually sending a group of some of these p- success stories up to DC in the next few weeks, um, to discuss because we were able to open these because of the telehealth flexibilities that were extended during the pandemic. In order to keep opening up locations like this throughout the state, obviously we need some kind of assurance that it's gonna be permanent 'cause we don't wanna start offering something to our patients, change their lives, make it better, and then rip it away from them. Uh, we have gotten a lot of bipartisan support on that end, but anything that we can do, um, anything that you all can help support us with the messages that we're sending there to help these patients so that we're not sending them constantly to the ER, instead that they can come directly to us and we can have staff there to see them, would be just godsend for them.

66. 0:32:52

    Are these federally funded centers? They're not. They are funded, um, directly by HoG from those 340B dollars. Okay, but we extended here in Georgia, correct me if I'm wrong, uh, you know, to allow telemedicin- medicine to continue. Yeah. Is there- Sorry. No, I... Did we miss a barrier to, that would keep y'all from if the feds do something differently? Yeah, it's been through some of the rule, um, rule, like, permissions that we have on where the actual, uh, telehealth clinic is located.

67. 0:33:27

    But I can- Oh, yeah ... pull up all that information and have it sent to your office.

68. 0:33:31

    Okay. I mean, I, because going forward, if we've done something like that, that would, you know, interfere on a state level, it, uh, would that be like how close there was a doctor to treat or something like a mileage?

69. 0:33:45

    A little bit. It's like from the Medicare rules, um, that are generally what allow us to have those locations. Um, so if an area is, like, considered rural or not, that's where, like, uh, our boundaries are kind of drawn there and we're not able to keep our clinics in those places.

70. 0:34:00

    Okay. That would- We'd have to see whether those are federally-

71. 0:34:03

    Yeah

72. 0:34:03

    ... rules for Medicaid or whether they're state-

73. 0:34:06

    Yeah

74. 0:34:06

    ... general.

75. 0:34:06

    It generally has been the federal, but-

76. 0:34:08

    Okay. And, uh, before I turn it over to Representative Reese, uh, uh, it says 33,000 people nationally have it. What, how many people do we think we have in Georgia?

77. 0:34:19

    We have over 2,000 patients in Georgia, um, but those are folks that have been diagnosed and that are currently under our treatment. There are- We assume that there are more with von Willebrand's because that doesn't present as strongly, um, and as clearly, and it's something that we see more in women, and women are severely under-diagnosed.

78. 0:34:36

    I- I'm sorry. It's my hearing. What do we have more in women?

79. 0:34:39

    Uh, von Willebrand's.

80. 0:34:41

    And that's?

81. 0:34:42

    It's severely diagnosed. It's, um, a bleeding disorder as well. Uh, it falls under this, um, and so their clotting is also affected. But that one, uh, it presents more in women, but it's very under-diagnosed. Women in general have less treatment with their bleeding disorders, but it has been, like, one of the national group's focuses in the past couple of years. I know.

82. 0:35:06

    If, if it's misdiagnosed, what's it associated with? Why is it misdiagnosed?

83. 0:35:10

    So a lot of times it's just written off as heavy periods, iron deficiencies.

84. 0:35:15

    Oh.

85. 0:35:16

    Always.

86. 0:35:17

    Easy bruising.

87. 0:35:18

    Uh-huh.

88. 0:35:19

    Something like that. Okay. Representative Reese.

89. 0:35:23

    Thank you, uh, Madam Chair. I, I guess I wanna dive back into those numbers again we talked about earlier. Uh, with, with it being more prevalent in males, have you broken that down? 'Cause sometimes we see certain conditions, um, follow certain races and things of that nature. Is it equally broken down between Caucasian males and Black males, or do we see a higher numbers with certain groups? Like, give us a little bit more information on that.

90. 0:35:45

    So in general, it is pretty spread out. There's not, like, a specific group that we see more with hemophilia than not. Um, when you get down into the types of hemophilia, that is where you see slight- more, slightly more of a breakdown on the race and everything. So something like hemophilia X, they're missing that factor 10 in, that their liver would produce, and that's more present in Ashkenazi Jews, um, things like that. But generally, like, uh, the most prevalent types are hemophilia VIII and IX, where you're missing those two factors, and in those two, it's pretty fairly distributed.

91. 0:36:21

    And, and I ask for, for informational and awareness purposes because when we think about avenues in which we can share this information, uh, i- if there was particular groups we needed to target, we would know how to get there. But it sounds like just males in general need to have this conversation because, you know, I see a lot of information about men health, Madam Chair, but I don't think I've ever seen anyone talk about this.

92. 0:36:44

    Yeah.

93. 0:36:44

    And so we need to find a way to put this in the mainstream of conversations amongst men about, um, this condition and let them know that there's certainly help out there. Thank you for your patience with this.

94. 0:36:56

    Thank you so much. No, any questions you might have, even after this, please.

95. 0:37:00

    Thank you, Chair. Um, uh, thank you so much. Um, uh, being a medical professional myself over the years, 35 years, von's Willebrand's, what we've seen is some women, they don't even know they have it even e- until childbirth.

96. 0:37:14

    Yes.

97. 0:37:15

    And they're getting ready to do it, and then you got a lot of blood, and you know, "Wow, this person's bleeding like this." Um, that, you know, we see it or even if we're looking at when they have to go to the dentist, I don't know how much you had to go over this, but I had some people, constituents here to see me. But, um, they also have to take a medicine, keep a medicine with them refrigerated all the time, so even something as little as a, a deni- dental visit, it could cause a big problem. But I think the biggest thing we need to see is more the awareness and the encouragement of probably wearing, uh, you know, some type of bracelets.

98. 0:37:47

    The medicals.

99. 0:37:47

    But even if they have the bracelet and somebody looking to say, "What is this?" I just think the education, even in the medical professionals may not be aware, where they go to a call, you know, somebody's fallen and they're cut and they're bleeding, they can't stop the bleeding. But at that point, if they knew, "Okay, this is what it is," there's a whole another protocol that I think that should be in place with medical professionals to understand how to treat them. But I think most things is the people that are aware of it is the prevention.

100. 0:38:18

     You know, and also if a person that has it need to let whoever, you know, medical treatment or whatever, or people around them, let them know, "This is what I have, and if something happens, you know, I either have my medicine, or before you go somewhere, me take my medicine to make sure, you know, your clotting system is a little bit better." But I thank you for talking about it. But like I say, you could probably look over the past and see women that were having childbirth that actually passed due to blood loss. And if you go back years, you'll probably know that some of them had this, but it was not, they were not, was not aware of it-

101. 0:38:52

     Yeah

102. 0:38:52

     ... you know, diagnosed.

103. 0:38:53

     Absolutely. Thank you so much for that. Um, I will- There's a few things I want to address with that actually, if y'all don't mind. Um, like I've mentioned- Uh, as I mentioned earlier, I do come from this from a personal background as well. Uh, my mom is one of the examples of those women that, uh, thankfully she did not die in childbirth, but when she had my brother, she bled out and they could not stop it, and they had no idea what was going on. And unfortunately, she is one of many with those stories. She did actually, even after that, she didn't get her diagnosis until she was 50 years old.

104. 0:39:24

     Um, she got a matching boot like mine, uh, from breaking her leg, and, uh, she then found out just from that case 'cause she would not heal. It was bruising, bruising, bruising until her leg was, uh- bright purple. Uh, and they had no idea what was going on with her until she told a random nurse, because this was in the ER, because her doctor hadn't seen her. She said, "Hey, my son has hemophilia. Do you think maybe it has something to do with what's going on with me?" And that's when they finally got an answer for her. So, um, it is something that y- nationally, the Bleeding Disorder Foundation is working on, and so we're working closely with them, making sure that women are getting more of those diagnoses and not just being written off as, you know, they're bleeding more because X, Y, and Z.

105. 0:40:08

     Um, in terms of the dental and preventative care too, our chief medical officer is actually, um, he's spearheading an initiative right now to really provide that education to dentists, um, anyone that works in a patient's mouth because it's something that, unfortunately, people don't think right away this is gonna cause a lot of bleeding. But for our patients, it's obviously something that they need to intervene, get that treatment beforehand, get that factor infusion or, um, any kind of medication that they need to really sustain the bleeding. Um, and so we have gone to dental conferences now, just presenting them with the fact that this could happen in their office, and we wanna make sure they have that information.

106. 0:40:45

     Patients that are under HOG's care, they already have their social workers and their nurses that will go presentations in their office, their school, uh, their dentist, anywhere that they might need to have that, uh, information available for them. So I really appreciate those comments. That's something that we are highly focused on. We really do wanna address it as much as possible.

107. 0:41:08

     Um, and this is a little bit more about how we are connecting our community. Um, as y'all mentioned, we had some great questions and comments here just about, uh, men not knowing with their health, uh, when it comes to bleeding disorders, it being something that's not widely addressed. It's something that, because it is a rare condition, like I said, we treat two thousand patients in Georgia. That's not a lot of people, but it is enough to really build a community, and we make sure that they know each other and that they know the resources that are available to them. A lot of times you'll go to-- We'll have our families go to Camp Wanacle, which is a summer camp that we do for our kids.

108. 0:41:44

     And they go, they let loose in a way they've never before. You can imagine a lot of these children are treated like they're made out of glass by their parents, by their teachers, by their families. They go here, they're horseback riding, they're swinging from trees, they are playing soccer, football, things that would make a mother just pass out from, uh, actual fear. But they're surrounded by nurses, doctors, and their social workers, and so they have all the help and assistance that they might need there. And they get to meet kids that are going through the exact same thing that they're going through.

109. 0:42:16

     They are learning from one another how to infuse, how to take their medication. We have six-year-olds that have these butterfly needles, and they're like, "Yeah, it's super easy." By the end of the week, they're like, "Mom, I can do this myself." And so we have that. We also have it for families. We have teen and adult retreats and events, and our family camp weekends, and so it's families getting an opportunity to connect there. Um, we're also part of a bigger Southeast Regional Hemophilia Network, and so Georgia is actually the lead there.

110. 0:42:46

     Um, as you can see, Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, and Tennessee. And, uh, we are the regional core center. So when it comes to the reporting for HRSA from that 340B money, we are in charge of that for every state and any technical assistance. Um, and that involves over six thousand patients in these states, and so we're able to really keep track of all that information, all that data that comes in and out of the eight states that we're covering. These have been our policy priorities and the things that we really wanna make sure we're taking care of in order to continue to take care of our patients.

111. 0:43:22

     Um, as you've heard me say it a few times, maintaining and protecting that 340B program, telehealth and broadband, mental health, and gene therapy are our top priorities right now. Uh, it's something that we really wanna make sure that we're able to look out for our patients, what's coming in the future. Um, something that isn't listed on here, but it is relatively new. It's-- We have an aging population for the first time, and so things with-- that have to do with, uh, the skilled nursing facilities, really helping them broach that topic because a lot of our population was wiped out in the '80s during the AIDS, HIV crisis.

112. 0:43:57

     Um, folks with bleeding disorders got contaminated blood, and so we, um, unfortunately lost a, I would say, about ninety percent of our population. So people like my brother are considered the old guys in this community. There are some that survived, and we have their stories, but we really wanna do everything we can for this population that is now starting to age, and whatever we can do for their healthcare, for their quality of life, we are focusing on that. And the last thing I wanna mention is that we also operate the Hemophilia Advisory Board.

113. 0:44:30

     We help to facilitate it. Um, this was created in twenty eleven, and so it consists of, uh, folks that work for our hemophilia treatment centers, pe-people with hemophilia, people with a bleeding disorder other than hemophilia, caregivers of people with hemophilia, and advocates. And so we submit a annual report to the Governor's Office of Health Strategy and Coordination just with recommendations on insurance, healthcare, anything that our patients might need, and anything that we could recommend to improve their lives.

114. 0:45:01

     So if there are any additional questions, that is all I have for y'all. Thank you so much.

115. 0:45:05

     I have one, and thank you for the presentation. Okay.

116. 0:45:10

     Thanks. Really quick question. You had a great slide about some novel therapies to treat hemophilia. One of them said gene, gene therapy-

117. 0:45:17

     Yes

118. 0:45:17

     ... I think was the, the caption. Is that, is that stem cell transplantation, or is there something else?

119. 0:45:22

     Uh, close. It, um, we s- we're starting with it right now. The option that we have for gene therapy, it's, um, it's really just like a six-year kind of, uh, I don't wanna call it a band-aid, but it i- it basically eliminates, like, the need for factor replacement or, um, other medications for six years for folks with hemophilia. So yeah, they are doing the stem cells.

120. 0:45:42

     Okay, great.

121. 0:45:44

     Yes, Madam Chair. Thank you. Um, Madam Chair, I just wanted to point out that Michelle did this whole presentation in, in a boot. She is standing up there in a boot on her foot right now, so, so that is outstanding. That is dedication. I just wanted to point that out.

122. 0:45:59

     You know, if you were on that or any of the committees, you could have asked to sit down. I didn't see the boot.

123. 0:46:04

     I, not to sh- overshare, I'm kind of used to the boot. I've had it for about a year now from the last time I was scheduled to present.

124. 0:46:10

     Okay.

125. 0:46:10

     Um, I fell outside the steps here in clubs.

126. 0:46:13

     Please don't fall again.

127. 0:46:15

     I promise not to. But, uh, you know, I'm adding that just so you remember me.

128. 0:46:19

     Okay. Thank you very much-

129. 0:46:21

     Thanks, y'all

130. 0:46:21

     ... for the presentation. Okay, let me call, uh, Representative Petrea for House Bill 1097. We now have a quorum, so make sure we keep...

131. 0:46:35

     That wasn't me. Right here, sir. Thank you, Madam Chair Lady. Thank you very much.

132. 0:46:48

     Have with me general counsel from the Department of Behavioral, uh, health, uh, Developmental Disabilities, and I say this all the time. DBHDD, how about that? All right. Madam Chair, um, you have a new substitute before you. It is, um, substitute House Bill 1097, and each of you should have LC 62-0404S, if that is correct, I hope.

133. 0:47:19

     All right, so let me explain what we're trying to do here, uh, Madam Chair Lady. Last year, I carried House Bill 584, which moved the licensure of, uh, several, uh, facilities that are regulated generally. They weren't licensed and regulated purely by healthcare facility regulation, which is, uh, a division of DCH. They were licensed there, but they lived in the world of DBHDD, the Department of Behavioral Health and Developmental Disabilities, and they are behavioral health and developmental disability entities.

134. 0:48:02

     They included adult residential mental health programs, community living arrangements where we house individuals with, uh, intellectual disabilities, drug abuse treatment programs, and narcotics treatment programs. We took those entities and we placed them under, uh, DBHDD as a matter of efficiency. So now providers aren't dealing with two, uh, departments. They're dealing with just that one department if they're in that world. So that was a good thing.

135. 0:48:33

     One of the things we failed to do, we realized subsequently, was to move the ability for the Department of Behavioral Health and Developmental Disabilities to do the criminal record checks and background checks that are necessary. So that is really the genesis of what you have before you with 1097, House Bill 1097, and the LC I mentioned earlier. So I'm going to mention that, and then I'm going to, I'm going to also mention an addition, which is the reason you have a substitute before you, for a piece that came from the governor's office and the governor's staff.

136. 0:49:09

     So, um, let me first tell you, uh, you know, the reason for this. Obviously, when we're... We want efficiency in government. Providers should not be working with two different agencies. You shouldn't have to work with the Department of Community Health and Department of Behavioral Health and Developmental Disabilities, uh, to serve a population, uh, uh, day to day, providing them care in the home. Moreover, um, uh, there were some, uh, issues, I'm looking here to find, there were some issues we clear up in here of some people we weren't catching in those background checks.

137. 0:49:50

     For example, you'll see if you go through this measure, uh, there's a definition of contractor. So it's not just, um-

138. 0:49:59

     The line

139. 0:49:59

     ... employees. The line? Yes.

140. 0:50:06

     117.

141. 0:50:06

     117 is correct. There's a definition there of contractor, and I'm going to start with... So starting on section two, which is kind of the genesis of the bill, uh, so we're, we're c- we're catching contractors there who may not have purely met the definition of an employee or even a, uh, a volunteer. We want to make sure that with the most frail, vulnerable people in society that we're working with, that we capture everybody that needs a criminal record check. And to make a long story short, we need to make sure that, uh, each department is able to do that, and that's what we're doing here.

142. 0:50:42

     And so what this measure does is kind of strengthen and modernize the background check authority for DBHDD. And on section two, you'll notice that we're... That section is entirely in title 37, which relates, and we have the expert here if we need any help, uh, which relates expressly to, you'll see here, relating to mental health. This is where, uh, uh, everything mental health related lies as it relates to DBHDD.

143. 0:51:13

     Correct, sir?

144. 0:51:14

     Uh, and well, our, our developmental, our authority to, uh, contract with developmental disability providers is also-

145. 0:51:21

     Providers

146. 0:51:22

     ... under title 37.

147. 0:51:22

     Gotcha. So that is the domain we're in there. And so what we're doing, and, uh, I want to highlight a couple of things. Uh, I mentioned, uh, all of this in the interest of efficiency. I mentioned that. But what we're doing here on line 138 through 142 is makes, is, is authorize the department to con- conduct these national background checks. So there's a lot of different checks in the provider world. Some of them are only done in Georgia. Well, with the transient country we have, and when you're dealing with the most frail and most vulnerable people, if we're not doing a national background check, quite frankly, you're wasting your time.

148. 0:52:03

     Because the first thing somebody does when they have a ba- when they have a record is flee to a next spot. And so, um, this is really important. It's lines 138 through 142. Let me ask, sir, would you like to speak to this section, Section 2, before we get to the, the, the new add we added? Is there anything you would like to emphasize of importance to the department for the body?

149. 0:52:25

     Sure. Um, I think the, the, the, the main thing I would point out is that Section 2 ... So, so DBHDD has always contracted with certain providers of both mental health and developmental disability services around the state. So, um, the, this OCGA 37-1-28, which Section 2 deals with, has been in place for a, for a long time, and it deals with our ability to perform background checks on, for employees of providers that we contract with.

150. 0:53:04

     We're gonna continue to have a lot of providers that we contract with, and so, so this, this clarifies our authority to do background checks for those providers. As we move into Section 3, that's where we're getting into our authority to do background checks on providers who may not have contracts with us, but who we are now responsible for licensing. So that's the distinction, I think, between the, those two sections.

151. 0:53:31

     That's very helpful. And, and if any of the members are interested, um, in any of the types of, uh, facilities we're talking about, I'm glad to speak to that. They may not be. I also wanna emphasize, you'll see, uh, language in there speaking to a multitude of code violations. So remember, when we, when we vet, uh, through the department, who can, for example, who can work, who can own, individuals that work in these type of facilities, what the provider gets back is a thumbs up or a thumbs down.

152. 0:54:06

     They're, uh, they're looking for certain violations, not all violations. And so if the, if any, any one of these members is interested in what those violations are, I have them here. But they are the things you would expect. They are, um, to be clear, we're talking about, you know, manslaughter and cruelty to children and ab- re- uh, abuse, neglect, and exploitation of elder adults and, and the list goes on. Yeah, that would be on page eight in the bill.

153. 0:54:36

     And starting on line, that would be starting on line, uh, 175. 175. And it gives a litany of, of, uh- Of the- ... offenses that are covered here that we're trying to make sure we capture. Go ahead. Again, all of this in the interest of being protective of, uh, the types of people that work in facilities like this. I do wanna mention that in Section 1, what we're doing, this was newer to me, so I'll do the best I can. Um, as we were working, this is a department bill, and so as we were working on this, we discovered that there, and, and again, sir, uh, you may wanna speak to this a- after I'm finished.

154. 0:55:19

     But we discovered that there is a separate path. So what we've been doing and what we're doing today is expressly, statutorily giving DBHDD the authority to do these record checks. Uh, my understanding is that through the National Child Protection Act, through federal law, there is a way to do this without a agency-specific statute. And so Section 1, and I'll go to that real briefly here.

155. 0:55:50

     In Section 1, what you will see, we're in a different code section that more broadly deals with, uh, uh, law enforcement and criminal record checks. And in Section 1, you'll see that, um, we allude to the, the, uh, the NCPA, the National Child Protection Act, and we, we give some definitions of agencies, but we're expanding that ability to, uh, for agencies, uh, in the aggregate to, to have the authority to do background checks.

156. 0:56:28

     And so, um, that is really what Section 1 is. Sir, do you wanna speak to that at all, please?

157. 0:56:34

     Uh, no, that, that captures my understanding of-

158. 0:56:36

     Okay

159. 0:56:37

     ... Section 1.

160. 0:56:38

     Yes, ma'am.

161. 0:56:39

     So you're saying

162. 0:56:43

     that whoever you contract with, this would then give them specifically the right to be in charge of getting the background checks?

163. 0:56:54

     I-

164. 0:56:55

     No, or is it the agency?

165. 0:56:56

     I'll let you answer that.

166. 0:56:57

     Yeah, the, our, our, our goal is for background checks to be run through, um, DBHDD.

167. 0:57:04

     Okay. All of them?

168. 0:57:06

     Yes.

169. 0:57:06

     All right.

170. 0:57:06

     Now, Section 1, uh, to my understanding, and Section 1, um, has been added pretty recently.

171. 0:57:14

     Yeah.

172. 0:57:14

     So I'll, I'll just say I'm not-

173. 0:57:15

     As in today recently.

174. 0:57:16

     I'll, I'm not as familiar ...

175. 0:57:19

     Right

176. 0:57:19

     ... with Section 1. My, my understanding of Section 1 is it would allow flexibility for other agents, for other state agencies other than DBHDD in the future if they se- if they find that they are needing to do similar kinds of background checks. It would make it, make the process a little simpler for them to be able to do that, to, to square things away with GBI to conduct those searches, so they don't have to go through the whole kind of process that we're that we're-

177. 0:57:49

     Right

178. 0:57:49

     ... going through.

179. 0:57:50

     Yeah. With one statute, with, with this, we can allow a multitude of agencies

180. 0:57:57

     Going forward without having to specifically put it in statute to do criminal record checks themselves, should they need to do so for whatever protective means they need to do so. Okay. But would we still have to give that agency, whatever agency it might be, permission to do those background checks? I don't think so. I, again, this is new to both of us here, but my understanding is we found a federal path to avoid having to do that to make it less cumbersome.

181. 0:58:30

     'Cause what we're doing here is we're literally... So last year, we moved these, uh, uh, facilities. They're really, most of them are facilities or programs. We moved them away from DCH, but yet we've still had to encumber DCH to do the criminal record checks. Uh, and so we're, we're fixing that with, with the original intent. But I think that we could forego that in the future according to what I was, um, what I have before me.

182. 0:59:03

     Is that... But you're the, you're the expert. That's, that would be- Is this your area? I- Yeah. Excuse me. Do you work for- Yes, sir. Patrick, please come up. Okay. Join us.

183. 0:59:16

     It's a family affair, Madam Chair Lady. That's fine. Uh, Patrick Bielecki, uh, Legislative Director for the Department of Behavioral Health and Developmental Disabilities. I think Section 1 is already 35-3-34 dash tw- uh, point two- Point two ... already exists. I think local entities are already using this. If you look at line 28, we're just striking local government agen- agents, uh, agencies, so you see where they're cutting local, so that would expand that to executive agencies, so. It would what? It would allow...

184. 0:59:46

     If we strike local, which the bill does on line 28- Right ... it would expand that definition to government agency, which would encompass, um, executive agencies for the state. So this is already being utilized by local governments. That would just expand it to all government agencies. Yeah. Very good, Patrick. Thank you. That, I should have pointed that out. You're correct. Thank you. So that's, uh, line 28 through, uh, 29 is current law. Okay, I think- And, but it's expressly for local government. And so now we're making that- Okay, now you're, uh, opening up the lines, a rep- I mean, the, the lights.

185. 1:00:21

     Representative Steen. Thank you, Madam Chair. I just have a quick question. How long is a, um, is a criminal background check good for?

186. 1:00:35

     You wanna take it? Um, so, so the intention of the, of, of the bill is to, if, if someone is seeking employment with one of our providers to provide direct care to a member of a vulnerable population, um, that p- that facility would run a background check through DBHDD, and we would then let them know whether or not anything came up in that, um, background check that would, that would signal that that person should not be employed in that capacity.

187. 1:01:11

     Um, we would, we would expect if, if that, if that person came back in a year to that facility and again applied for a job, we would expect the facility to again run a background check. So I don't, I don't know that there's, uh, an exact expiration date for a background check, but it's per, per job application. Uh, let, let, let me speak to that, too. Thank you, sir. That's very helpful. Uh, uh, let me say this. So, so remember if, so if I get a criminal record check to go to work for, uh, Representative O'Steen today, uh, and then I leave a month from now, and then I go to work for Representative Dempsey, I have to do it again anyway.

188. 1:01:55

     So when I, when I change employers, that em- that, that provider, that employer has got to criminal record check me even if I did it last week. Okay. Unless y'all tell me otherwise. It's the way it's always been. Now, having said that, we have something very important here that we haven't got to yet that I want to point out, and, uh, th- which your, your, your good question leads me to. And if you will look, we're gonna do something. So we did years ago here in the legislature, we p- we passed Rap Back, if y'all remember.

189. 1:02:32

     We passed Rap Back so that, so historically, we would do a criminal record check, but, um, if, uh, that individual had a clean record, committed a heinous crime tomorrow, no one knew about it- Correct ... until you criminal record check them again. Rap Back avoids that. It's a constant, it's an immediate update when you have a new crime. And so that is on page... Page 13, starting at line 317.

190. 1:03:05

     Yes. 317 to 321

191. 1:03:11

     is basically Rap Back provisions. So going forward, this is something new. So DBHDD providers today, um, uh, don't have this. And so you're gonna have Rap Back. So I hope that ultimately, um, you know, you're not gonna be r- you know, there's gonna be no need to continuously do a criminal record check for, uh, someone who works for you that continues to work for you. If they move to another employer, they're gonna have to be- Sure ...

192. 1:03:41

     criminal record checked again, and they should, because that new employer needs to know that they know that they know that this is a safe individual to care for the most frail, sick, vulnerable people in society. But you won't have to constantly do it over and over again. So I did want to point out Rap Back on lines 317 to 321. But that is an excellent question. So there, there is communication if, if, if someone is convicted of a crime

193. 1:04:07

     There is communication going to be going back to DBHDD

194. 1:04:11

     The DB- There would be a contact to the provider saying, "This individual's no longer, um, authorized to work in this type of a setting," because there's a hit of a new crime that would meet the criteria. Now, again, there's a certain, there's a list-

195. 1:04:24

     Sure

196. 1:04:24

     ... of crimes that I, that I alluded to earlier. I didn't itemize them all. There's a lot of them.

197. 1:04:30

     Sure. Thank you.

198. 1:04:32

     Good. Okay, now since you didn't, you know, we let, we put down what the codes were. I- if I'm understanding this correctly, it's like they only give us a red light or a green light.

199. 1:04:45

     Yes, ma'am.

200. 1:04:45

     They do not tell the employer that I was convicted of child abuse.

201. 1:04:52

     That's correct.

202. 1:04:53

     They, or I was-

203. 1:04:55

     That's right

204. 1:04:55

     ... uh, they don't tell what the crime was. They just say-

205. 1:04:58

     Yes, ma'am

206. 1:04:58

     ... basically-

207. 1:04:59

     You're gonna get a thumbs down is the way I describe it.

208. 1:05:01

     Right.

209. 1:05:01

     You're gonna get a thumbs down. You can't hire, you can't hire-

210. 1:05:04

     This person

211. 1:05:05

     ... this person. You either can or you can't, and that's all that you're gonna know.

212. 1:05:08

     And then on the RAPBack, they would just get it and say, "This person no longer has thumbs up, and you need to..."

213. 1:05:15

     Correct. Yes, ma'am.

214. 1:05:17

     But-

215. 1:05:17

     That is a good way to describe it

216. 1:05:18

     ... using the federal program, they're very protective of the federal program apparently. It's very hard. It's taken us sometimes, when we first started doing this, they were very reluctant to let the state have any kind of information. You remember, Katie?

217. 1:05:31

     I do remember.

218. 1:05:32

     And so that's what they decided they would only give us a green light. Well, you know, I called it at the time a green light or a red light about it, but no discussion of what it is, um, to go forward. And this is what this does, right?

219. 1:05:44

     Yes, ma'am. And Madam Chair, just to, to give you, again, there's s- there's a, a, a litany of these, but just so everyone understands, they are, uh, they are violations that involve, of course, violence, sexual abuse, uh, neglect or exploitation of children. There, theft, all of these things that would in- that where someone could take advantage of someone more vulnerable. All of those are, are captured in here. Those are the type of crimes you see as I look through them.

220. 1:06:15

     Burglary, uh, you know, uh, controlled substances are in here, forgery and fraud, all of th- and of course any number of sexual offenses. So those are the kinds of things, and if you, if they're hit, thumbs, thumbs down, and if they're clean, you get a thumbs up, and you just know that I've been cleared to hire this individual.

221. 1:06:33

     I've got lots of lights. Representative Reeves.

222. 1:06:37

     Thank, thank you, um, Madam Chair, Madam Chair. Thank you, uh, Mr. Chairman, for, um, bringing this bill here. I just wanna make sure I'm clear on a couple things. With the RAPBack system, it basically stores the fingerprints, and if some, if those fingerprints are put into the system based upon a, a recently committed crime or arrest, then it's gonna match up and send notification to the last person who requested it, which is why it's important that if they go to another department or to another job, that they still go through the fingerprint process.

223. 1:07:09

     So this system will know who to notify if there is a problem. That's my understanding.

224. 1:07:15

     Yes, sir.

225. 1:07:15

     That is my understanding.

226. 1:07:16

     And that's your understanding, too, which I think is a good thing because it, it, it helps us keep that information intact. So, so essentially this bill, uh, what you're bringing to us, Mr. Chairman, uh, i- expands our state capability of searching people backgrounds beyond state borders and takes it national. And, and you're absolutely right, we are more of a, uh, a very, um, transverse country now. People can get from state to state quite easily. I live in Columbus. I can go across the river in less than a minute. So it's important that we understand what's happening in various areas.

227. 1:07:48

     And it also is going to give other agencies throughout our state access to these background checks in the future should they need them. And, and agencies sharing resources shouldn't be much of a surprise to us here. We just heard a commissioner talk about, um, um, how, uh, you know, they utilize a system through another department, but it's, it's where the state has the license to, to do that type work. And I guess what makes this bill so big and, and, and, and, and, uh, um, uh, I, I guess ugly is the fact that it's so many federal codes in here that you gotta quote.

228. 1:08:21

     Yeah.

229. 1:08:21

     Because it's really not a complicated subject here that we're talking about.

230. 1:08:24

     It really isn't.

231. 1:08:24

     We're talking about protecting the people of Georgia, making sure we're doing proper background checks for employees, for contractors-

232. 1:08:31

     Correct

233. 1:08:31

     ... and for other people that are engaged with them. But because of all the federal code, you know, you have to have five, six, seven, 20 pages-

234. 1:08:38

     Correct, sure

235. 1:08:38

     ... of this document, you know, just to do that. So I just wanna make sure I was clear, wasn't missing anything, Madam Chair, um, as I read through it. And at the appropriate time, I would like to move that we pass this bill.

236. 1:08:49

     Thank, thank you, Representative. Very much of this is, is, is, most of it is procedural.

237. 1:08:54

     Those doggone lawyers.

238. 1:08:55

     Darn lawyers. Sorry.

239. 1:08:56

     Representative Hilton. I'm teasing, of course.

240. 1:09:01

     Thank you, Madam Chair. I am not a lawyer. Um- ... I'm married to one, who's very lovely. Um, not to beat a dead horse, um, and I asked this, uh, there was a, this is more education related, but I'll, I'll tie it in. Um, we had a bus driver in Gwinnett County who was arrested for a DUI. Um, he was actually arrested for two D- two DUIs. He's not been convicted of either one yet. Uh, presumably he will be, but he's still... And, and again, they don't have a process by which you're outlining here, where you have this kind of proactive check. So anyways, but I guess it brings me, my, my question is, uh, in, is it convicted or arrested?

241. 1:09:39

     Let me get the experts to speak to that, sir.

242. 1:09:43

     And the reason I ask is, say you get arrested for child molestation.

243. 1:09:47

     Mm-hmm.

244. 1:09:48

     You're not convicted yet.

245. 1:09:49

     That's correct.

246. 1:09:49

     Are you still serving children?

247. 1:09:52

     Right. The, um-

248. 1:09:54

     And that worries me.

249. 1:09:55

     Let's see. I'm trying to find the exact place. Okay. Yes.

250. 1:10:00

     I think it's page-

251. 1:10:01

     So it's page, page eight, beginning at pa- beginning at line 198. So the kinds of criminal records that we are looking for would include not only conviction of a crime, but also arrest, charge, and sentencing for a crime with a plea of nolo contendere, first offender, um, or at C, line 36-

252. 1:10:24

     Where are you, I'm sorry, where are you reading again?

253. 1:10:26

     Um, line 198 on down.

254. 1:10:28

     Got it. Thank you.

255. 1:10:29

     So begin at 198.

256. 1:10:30

     Yeah.

257. 1:10:31

     Okay, got it. Yeah.

258. 1:10:32

     So, and it would also include at pa- at line 206, we would also be looking for information about arrest and charges for a crime if the cha- if the charge is pending, unless the time for prosecuting the crime has expired.

259. 1:10:47

     Okay.

260. 1:10:48

     So the statute of limitation. So yes, it would include even an arrest for a crime. We would, we would capture that and we would flag it.

261. 1:10:56

     Thank you for the very good question, Representative.

262. 1:10:57

     Thank you.

263. 1:10:58

     That's a good point. And, uh, and again, I think the, the rationale for that, um, I assume is that, again, with the most vulnerable, you, you don't take chances. And so we're talking about people with, um, whether they have profound developmental disabilities or frail seniors or dementia or what have you, and might, whatever it might be.

264. 1:11:17

     Thank you.

265. 1:11:17

     I hate to ask this, but it seems like to me, and years ago when we were discussing this for another thing, that there was some feeling that in our court system across our state, that maybe these types of things were not reported in a timely manner or not sent up the line to let people know. Is that, is that still a problem? I mean, I've been doing this for a while, so hopefully things have changed, but did you get anything like that? I mean, it, 'cause they were saying they might not be capturing.

266. 1:11:50

     Well, I can say this. In, in my correspondence with the GBI-

267. 1:11:55

     Okay

268. 1:11:55

     ... um, about to make sure that we got everything phrased correctly in this, um, my understanding from GBI and from the Georgia Crime Information Center is that when it, if someone is even arrested and, you know, for a crime, when they are booked, um, and fingerprinted, that that information goes immediately to-

269. 1:12:19

     Great

270. 1:12:19

     ... the FBI information center. And if that is the case-

271. 1:12:23

     Then they would know

272. 1:12:23

     ... then our records check should catch it.

273. 1:12:25

     Great.

274. 1:12:26

     Even if they've just been arrested.

275. 1:12:27

     Okay.

276. 1:12:28

     So, so it's not dependent then necessarily on the, the court system having reported it. It's-

277. 1:12:34

     Well, I guess with the computer age and all, and the, the courts have really, it's not the paper trail anymore as much-

278. 1:12:41

     Yeah, yeah

279. 1:12:42

     ... push a button and you know that you've got it. Good. 'Cause that was one of the problems, I think, that they said that at the time. Uh, Representative Cannon, you had a question.

280. 1:12:52

     Thank you, Madam Chair. Uh, thank you, Mr. Chair, for working on this. Just two questions about two of the violations. On line 183, violation of code section 16-7-60.1, that is arson of a law enforcement vehicle. Why are we including that one?

281. 1:13:16

     We're including all, all kinds of arson. Um, so it's not targeting specifically where obviously we're, we are interested if someone has committed a law- arson on law enforcement vehicle, but we're interested if, if they've committed any kind of arson. Um, and again, that's just an attempt to capture any sort of violent, violent crime or destructive crime.

282. 1:13:38

     Mm-hmm.

283. 1:13:38

     Um, part of the, the thinking behind that is that some of these employees are working in residential facilities where people are going to be living. We want to make sure, yeah, obviously, if anybody has committed the kind of crime that would, that would involve s- destruction to a building which may endanger human life, we do want to know about that.

284. 1:14:04

     Thank you. And then just to follow up, on line

285. 1:14:09

     185-

286. 1:14:11

     Mm-hmm

287. 1:14:11

     ... a violation of code section 16-10-31-

288. 1:14:18

     Mm-hmm

289. 1:14:18

     ... concealing the death of a person.

290. 1:14:22

     Mm-hmm.

291. 1:14:22

     Does that include a fetus past six weeks gestation?

292. 1:14:28

     I don't recall the answer to that off the top of my head. Uh, I would need to look back at that code section.

293. 1:14:34

     Uh, I think that relates to, uh, the crime that sadly we see too often where, uh, someone is defrauding or stealing from an individual, a senior who passes away, and they hide them, uh, long after their death or hide them in their backyard or in a trash can or any number of, uh, horrible scenarios we've heard. That is my understanding.

294. 1:14:59

     Yeah.

295. 1:14:59

     And to your other point, Representative, I understand, and I appreciate your good question, but, um, uh, as someone who served the developmentally disabled my entire life, I would never hire one who had burned a car or a house or anything else to care for, alone, uh, individuals who are completely intellectually disabled. I think that's perfectly appropriate. Any and all type of arson I think is appropriate. But that's my opinion. I respect yours as well.

296. 1:15:29

     I didn't state my opinion. I just asked a question.

297. 1:15:31

     Yeah, no. Thank you for the good question.

298. 1:15:33

     Um, Representative Reese?

299. 1:15:35

     Yeah. Thank, thank you, Madam Chair. Uh, Mr. Chairman, I kinda just wanna bring this full circle 'cause we're talking about the search, and we're talking about the categories in which we're doing the search, but I think it's also important that we discuss a little what happens with the information. Because it's not like this is necessarily used to automatically fire people. It's like in the educational system now. If you have a teacher or someone who's accused or arrested for, uh, inappropriately touching a child, that teacher may be put on suspension until the resolution of that matter, at least removed from the environment, because you have to be careful for the population that we serve.

300. 1:16:09

     So that's kinda where I see this, is making sure that if anything happens, the people that, uh, have the authority to make those decisions are keeping safe that vulnerable population-

301. 1:16:20

     That's right

302. 1:16:20

     ... and at least being, erring on the side of, of caution. I rather we err on the side of caution, pull someone out an environment, let them resolve this matter. If they end up not guilty, then they go back into their job. So it's not to per- permanently hurt anybody, but it's just to make sure that we are looking out for those that we serve, uh, from a state perspective, because we, we should have a higher standard as, as, as a state. When we have people in certain places that are in state custody or, you know, DFCS or, or the elderly population, we need to make sure that these contractors, these employees are operating with the highest level of integrity, and that if anything happens that questions their character, we need to know that.

303. 1:17:02

     Not to chastise them, not to, you know, jump to judgment on them, but to give them the operational freedom to resolve that matter and to make sure that the people that we are with are safe.

304. 1:17:14

     Yes, would you-

305. 1:17:14

     Would you agree with that, Mr. Chair?

306. 1:17:15

     I agree 100%, sir. Well said.

307. 1:17:18

     Representative Hilton.

308. 1:17:19

     Make the motion to pass?

309. 1:17:20

     Oh. I, I, what?

310. 1:17:22

     I'm gonna second it. Okay.

311. 1:17:24

     We're not quite ready for that. I will ask the author to tell us and hit the, that anything else he'd like to, that he feels like we need to know this bill. But before it hits the floor and before we don't know, because people are gonna be asking us questions because we heard the bill.

312. 1:17:41

     Yeah. I, uh, Madam Chair, lady, you, uh, I appreciate the good questions. It's helpful to have good hearing and good questions. I appreciate all that. I think that ne- what we're trying to do is make, uh, we're trying to do two things. Um, if I had the 30,000-foot-view look at it, we're trying to make the system safer for people who require us to be protective of them. At the same time, trying to make government more efficient by allowing, uh, you know, not only a more effective capture of this type of information, but also for us not to have multitudes of departments working with, uh, one provider and one individual.

313. 1:18:22

     We're trying to put everything where it belongs, so people don't have to jump through more hoops rather than fewer to serve a population. So I think that's the big picture on what we're trying to do. I'm not an expert in these affairs, so I appreciate y'all bearing with me. I do understand the, the, the tremendous importance of them. And, um, and I think this is, uh, uh, only beneficial to the department and to the people the department, uh, serves.

314. 1:18:48

     Do you have other specifics you want to point out about the bill or anything you feel like-

315. 1:18:53

     No, ma'am

316. 1:18:53

     ... is a good question?

317. 1:18:53

     That is, that is, I believe RAP Back is a priority. We've, we've addressed that. I believe that was the, uh, those are the most, uh, important aspects have all been. Most of this, as Representative Reese pointed out, is procedural.

318. 1:19:06

     Right. Okay. Like, what to do if you're turned down and-

319. 1:19:09

     Yes

320. 1:19:09

     ... and-

321. 1:19:09

     The whole process-

322. 1:19:10

     The whole process of-

323. 1:19:10

     ... as it relates to GBI and how they do all this, as well as, um, DBHDD.

324. 1:19:18

     Okay. All right. Uh, I, you ready, Representative Reese, you want to make a m- a motion?

325. 1:19:23

     We, we're absolutely ready. If, if I'm not, um, Representative Hilton is ready, but I think I can handle it. House Bill 1097, LC62-0404S, I move that we do pass.

326. 1:19:33

     Oh. It, the substitute-

327. 1:19:35

     S. I said S

328. 1:19:36

     ... to your house bill.

329. 1:19:37

     Yes.

330. 1:19:37

     Did you say substitute?

331. 1:19:38

     Yes, the substitute to the House bill.

332. 1:19:39

     I'm sorry, I didn't hear you.

333. 1:19:40

     Yes, ma'am.

334. 1:19:40

     I can't hear anything-

335. 1:19:41

     Yes, ma'am

336. 1:19:41

     ... on my ears. And you want to second it, Representative Hilton?

337. 1:19:44

     Sure.

338. 1:19:44

     Got a r- okay. Is there anybody in the audience that has a specific burning desire to speak to the bill? Okay. Do I have any other questions from, from members of the committee? No? Okay. Then it's time to vote. Everyone that's in favor to the passage of the substitute to House Bill 1097, say aye.

339. 1:20:04

     Aye.

340. 1:20:05

     Anyone opposed, no. Okay, the ayes have it. Thank you very much for coming and explaining to us.

341. 1:20:11

     Thank you, Madam Chair.

342. 1:20:12

     Okay.

343. 1:20:12

     Thank y'all. Great meeting.

344. 1:20:13

     All right. House Bill 334.

345. 1:20:18

     All right.

346. 1:20:18

     Dr. Dunlap. Dr. Crawford. Representative Crawford.

347. 1:20:21

     Thank you so much.

348. 1:20:22

     Thank you so much. I needed you here. You were awesome.

349. 1:20:25

     Thanks.

350. 1:20:38

     All right. You've

351. 1:20:57

     got the floor. Okay.

352. 1:20:57

     Thank you, Madam Chair, and to members of the committee. I'm bringing to you House Bill 334. You should have LC570194. This is a bill that aims to help individuals in our state that are living with sickle cell disease, to help our community's healthcare providers and researchers to better understand sickle cell, who has it, and how we can better improve their treatments. Uh, sickle cell disease is a chronic illness.

353. 1:21:28

     In its most simple form, the red blood cells have an abnormal crescent shape. Because of that shape, the blood flow through the body, uh, can lead, it's impacted, and the blood flow can lead to severe problems, to include stroke and chronic pain. This is a very common inherited blood condition in the US, and Georgia is in the top five for people that are impacted by sickle cell. This bill would do a few things, and I'll be brief.

354. 1:22:00

     It would require Georgia Medicaid to conduct an annual review of all the medication services and treatments that are available for individuals living with sickle cell, and the purpose is to determine what, what commun- uh, what medications are covered, treatments and services are adequate to meet the needs of enrollees with a diagnosis of sickle cell, and to see if we can add or recommend additional medication, treatment, or services. The review would seek to input from persons or groups with better knowledge of sickle cell disease treatment, and the bill will attempt to utilize the current Medicaid encounter data for implementing and collecting this information.

355. 1:22:43

     Tennessee was the first state to pass this bill. It has no fiscal note. There are about 17 states that have passed this legislation or similar legislation. Right now, there are over, um, from the data that I have found, there are over 10,000 people in our state who are impacted by sickle cell. So I think that this is a very important bill that can help people with sickle cell. It is most prevalent, of course, in Metro Atlanta. Of the 10,000 or so people who are impacted by sickle cell in our state, about 60% are in the Metro Atlanta area, but there are also people impacted in Macon, Augusta, and Savannah.

356. 1:23:23

     I'll stand for any questions if there are any.

357. 1:23:28

     Representative Au.

358. 1:23:28

     Thank you for bringing this bill, and I agree with you, this is a really important issue to address, and I'm gonna tell you why. We know that sickle cell has really historically been, um, under-researched and under-treated, right? Historically, it's received significantly less funding and attention than other comparable, uh, genetic disorders. We heard about one just earlier today, hemophilia, um, because of the population that it affects, right? So what we see over time is this sort of systemic neglect in terms of investigating new treatments, and there really haven't been new ones for, for quite some time up until recently.

359. 1:24:06

     And also, you know, like I said, the demographics make some folks disinclined to look for new treatments. So really, um, I think we get complacent with the fact that that's, that's all there is for sickle cell, but that's, that's no longer true, right? And in fact, there are some new therapies now that are really cutting edge, like CRISPR, like gene editing therapies, and I know some people hear that and think like, "That sounds expensive," right? But guess what? Sometimes when we have new therapies, it is worth it to habitually reexamine whether it's worth that investment because when you think about the cost of a drug, yes, it sounds like maybe a lot.

360. 1:24:42

     And just to be clear, nothing in this bill obligates anyone to pay for anything. It's just about, let's review the latest and greatest in research. But remembering that sickle cell is a chronic disease that affects people over a lifetime, which could be shortened because of the disease, and there are so many aspects to it that lead to many chronic health costs that end up probably being more expensive than dealing upfront with, um, something as, um, revolutionary as CRISPR gene therapy that could essentially cure a patient.

361. 1:25:12

     Yeah.

362. 1:25:13

     A- absolutely.

363. 1:25:13

     Thank you. Uh, Representative O'Steen.

364. 1:25:16

     Thank you, Madam Chair. Representative Crawford, is this, do you have some personal experience with this?

365. 1:25:22

     A lot. Um, grew up in an area, one of my closest friends had a sickle cell episode when I was young, and he has had a lot of challenges throughout his life. Because of his illness, I decided that I wanted to be a member of a board that looked at sickle cell. Uh, My Three Sicklers is an organization that advocates for people impacted by sickle cell, and then I have also had a loved one that passed as a result of a sickle cell episode, so.

366. 1:25:52

     When I was in nursing school 30-something years ago, I was in Ware County and, um, was present when, um, a patient presented in sickle cell crisis, and it left an impression on me that I shall never forget. Sounds like we need to study this a lot more. Thank you.

367. 1:26:08

     Thank you.

368. 1:26:09

     You may go. Uh, Representative Reese.

369. 1:26:16

     Thank you, Madam Chair. Uh, Representative Crawford, thank you so much, um, for bringing this, this very, uh, timely legislation, and I think it's right in sync with where the state has been headed. Um, I was in Columbus in 2021 when Governor Kemp announced that he was starting a sickle cell fund, and he named that endowed chair after Representative Calvin Smarrre, the man that I have the honor of following in the State House right now. So a- and then I, I, I show great appreciation to Governor Kemp for his commitment to fighting sickle cell in Georgia, and we know that Gloria Frazier carried this fight for a long time in the Georgia House, and it is just, it warms my heart to see you picking this up as well.

370. 1:26:58

     Um, a- a- very few people know that I, I grew up as the only child. I was my mother's only child for 17 years, but during that period, she was a foster mother, and quite often, we, I would see children come into our home, sometimes late at night, and, uh, everything they had, all of their possessions, was in a black trash bag. All they had in life. And it was some difficult times, and, and I remember a couple of them that came through with sickle cell, and, and they would sometimes be in just undescribable pain and couldn't pinpoint where it was.

371. 1:27:28

     It was all over the body at very random times. And it, j- just knowing, seeing up close how this condition impacts our community, impacts our culture, um, I, I'm so excited to see you bring this and know that it's gonna do well for our state and for our people. And it certainly is going to be in line with where the governor and, and other people are with fighting sickle cell in Georgia because they, we have committed to, to eradicate it if we can. And we know that with the proper research and funding, we can get that done.

372. 1:27:58

     And that initiative that he started, uh, actually brings together some great entities, um, to do that. Children's Healthcare C- um, of, of Atlanta, 'cause we know it impacts a lot of children, um, Emory University, as well as Morehouse School of Medicine. So we have some of the brightest people working on that, and I think our state agencies would do us well as a state by taking the initiatives that you described in this bill. And Madam Chair, at the appropriate time, I would like to move we do pass.

373. 1:28:25

     Okay. Um, all right. Representative Sharper.

374. 1:28:29

     Thank you, Chair. I'm gonna be very brief. Thank you so much, Representative Crawford, for bringing this. Uh, over the 35 years or so, I've seen, uh, a lot of sickle cell patients, um, not treated fairly, uh, because of people not being educated, uh, all over the country. But also here in Georgia, a lot of times a sickle cell person will do everything in the world that they can to not go to the emergency room, but when they go, it's, it's bad for them because they also know how they're treated when they come.

375. 1:29:04

     A lot of times they're saying that, "Oh, you just want some pain medication," or, "You just want..." We've seen this. So with what you're doing, not only what you're doing, but even the movement of being there for sickle cell patients, let's make sure we're educating our medical professionals even more On what sickle cell crisis are, and knowing that these people are really, really hurting, they don't wanna go to the ER. But I really appreciate you for this, but education's gonna be key to the medical workers, healthcare professionals.

376. 1:29:41

     Thank you.

377. 1:29:41

     Thank you.

378. 1:29:42

     Uh, Representative Dempsey.

379. 1:29:44

     Thank you for bringing it. Um, I began my service with Representative Frazier, so I know how much she did work on it. As she left last year, she told me I needed to carry it forward. So I'm glad you're doing that. This did matter to her greatly. Um, has the departm- have you worked with the department on this? Do we have any, any input from DCH as to how they feel they can make it work?

380. 1:30:09

     The c- communications I have with the department, uh, and I don't wanna mix up the year, it may have been last year 'cause this has been a bill that I drafted in 2023 when I first started.

381. 1:30:19

     Okay.

382. 1:30:19

     So I don't want to misrepresent the time that I've had communication with the department.

383. 1:30:24

     Mm-hmm.

384. 1:30:24

     Um, I did not remember or receive any negative feedback from the department, um, but I don't know if it was 2024, 2025. I, I don't remember what the year.

385. 1:30:36

     Yeah. I, I just think it would be good if we could possibly get that... There would be a different commissioner right now, uh, than would've been there at that time.

386. 1:30:44

     Mm-hmm.

387. 1:30:46

     I would, um, be sad if this tried to move forward and then something came out that made it stumble in any way. I know we have, we have a motion. We don't have a second, do we?

388. 1:30:58

     Yes, ma'am.

389. 1:30:58

     It's not a m- we didn't take a motion.

390. 1:31:00

     We didn't take a motion.

391. 1:31:00

     I just, I wonder if we might could get their input on the front end on it and just see what Commissioner Byrd might feel, how they could do it. There, um, there could even possibly be a way to do it, which is a way that I like to work with them, to develop the policy to do it without even necessarily having a law. I don't know. I don't know. I just, just a thought.

392. 1:31:23

     Thank you.

393. 1:31:24

     I just wanted to put that forward.

394. 1:31:26

     Um, Representative Au, go right ahead.

395. 1:31:29

     Just, just to your point, I was looking this up with respect to DCH, and it seems like they already apparently do some form of this review annually already, a drug utilization review. It's not specific to a particular diagnosis, but this mechanism of continual review is, is already in place, so I don't think it would be so, um, uh, you know, outre to, to have this bill pass and just have a specific focus within the department and within the functions they're already doing to look at sickle cell therapies.

396. 1:31:58

     Representative Cannon.

397. 1:32:02

     Um, you know, thank you for this bill. Of course, this disproportionately affects Black people, and we haven't said that on this committee. I think we've said a bunch of other things. And of course, we do know that, again, we can always go to the department and say, "Hey, do you have a rule on this? Can you just do it without us passing a law?" But as lawmakers, I mean, this is our role to consider doing this, so I appreciate you bringing this, and I hope that we'll consider continuing to move it because that is why we're here.

398. 1:32:35

     Um, and we even voted on a bill the other day on the floor where the conversation was very much the topic that the departments don't set, um, necessarily what we always need to do. Sometimes lawmakers need to do that, too. So just wanna give you some kudos for, uh, the bravery and for bringing this, and I see the necessity of it. Thank you.

399. 1:32:54

     Thank

400. 1:32:58

     you.

401. 1:32:58

     Okay.

402. 1:32:58

     I, I had questions about the fact that it's annual. You know, I'd like to know where we are now, um, and working with the department. So I think, uh, I have just made the decision that as chairman, that we, I'm going to hold this till next week, but you still have time to move it. How about the two of us calling in the department to come and talk to me in my office about it, and let's see if they want some changes or how they wanna do it and see if we can get it moving forward w- with their input, too, also, so we can say when it goes to rules, that I can say, you know, we've talked, we've worked with the department and we have theirs, which will be advantageous.

403. 1:33:45

     Is that agreeable with you?

404. 1:33:46

     It's agreeable with me. Thank you.

405. 1:33:48

     Write that. So, and, um, I would say going farther f- in the future, that's a good idea to probably come and talk about it 'cause I would have asked what Representative Dempsey asked if you talked to the department. So, um-

406. 1:34:04

     Previously, yes, but-

407. 1:34:05

     Yeah, but not-

408. 1:34:05

     ... we didn't have another-

409. 1:34:06

     But not recently

410. 1:34:06

     ... another conversation.

411. 1:34:07

     And then if they do do it yearly, I wanna know what they do. Uh, you know, how many things they do take or do they rotate them or-

412. 1:34:14

     They look at all medications.

413. 1:34:16

     But, uh, but all medications and all, that's a pretty big...

414. 1:34:23

     Right. That's why I'm saying it's useful to have a focus on a specific, like that's, since they have this mechanism in place, but it is useful to focus on that.

415. 1:34:30

     No, I'm sort of agreeing with you. If that's really what they do and they only do all, I would see a reason for being more specific. So, uh, this is not a negative thing at all. This is a positive thing. Just-

416. 1:34:41

     Didn't take it as that, no.

417. 1:34:42

     I'll, okay, 'cause I... We'll get it and see if we can't, if they have any questions. I mean, I would have removed the all, the all medications in case we missed one or something and that they didn't do it. Um, and I, I really think we need to know what the options are to what they're doing now. I'd like to know what they're doing now and how far we are behind, and let's see if we can make it tighter. All right? Uh, and with that, we are a...

418. 1:35:12

     If we don't, do anything else, we are adjourned.