Video & Transcript : 'sickle cell anemia' :

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MA

Massachusetts 2025-2026 Regular Session

Joint Committee on Health Care Financing Jun 21st, 2026 at 11:00 am

Joint Committee on Health Care Financing

Transcript Highlights:
  • Or would we—I guess we would say maybe that that's, you know, sickle cell, when it came out from Vertex
  • Because I completely agree, sickle cell, those are incredibly valuable drugs that we absolutely should
  • cell is a great example, against the cost that it saves the health care system. you know, in sickle
  • cell is a great example, against the cost that it saves the healthcare system, right?
  • So that is all factors that we would look at, because I completely agree, Pepsi, sickle cell, those are
Keywords: 995, all
Summary: The Joint Committee on Health Care Financing held a public hearing on a broad set of health care bills focused on cost, market oversight, pharmaceutical access, transparency, hospital closures, and pharmacy access. Chairs John Lawn and Cindy Friedman opened by emphasizing recent health care reforms and the need for further action on the drug supply chain, PBMs, private equity, and affordability. The committee heard testimony on several measures, including a Betsy Lehman Center bill to make technical changes and create a permanent trust account for federal and private funding, and bills on hospital profits and fairness, hospital closures and health planning, pharmacy deserts, and health care market oversight and pharmaceutical access. No votes were taken during the hearing. On the hospital profits bill, physicians and labor advocates strongly supported capping hospital CEO compensation at 50 times the lowest-paid worker, requiring greater financial transparency, and directing penalties from high-margin public hospitals into a Medicaid reimbursement fund. Testifiers argued that executive pay is excessive while frontline staff and safety-net services are under strain. Committee members raised concerns about unintended consequences, including whether hospitals might shift workers to contract status or lose executive talent, and whether the bill would actually direct money to the safety net. Supporters responded that the measure is one piece of a larger effort and that the bill’s Medicaid reimbursement provisions would help underserved hospitals. Testimony on market oversight and pharmaceutical access centered on rising health care and drug costs, PBM practices, and the proposal to give the Health Policy Commission authority to set upper payment limits for certain drugs. Consumer advocates, disability advocates, an independent pharmacist, the Attorney General’s office, and others supported stronger oversight, citing premium increases, affordability problems, and the impact of high drug prices on patients and community pharmacies. Pharma and some industry witnesses opposed parts of the bill, warning that upper payment limits could disrupt access, create legal issues, and fail to address the broader supply chain. The committee also heard support for stronger hospital closure notice and public hearing requirements, and for a pharmacy deserts bill aimed at identifying and addressing closures like the one in Roxbury that affected thousands of patients.
FL

Florida 2026 Regular Session

Community Affairs Feb 3rd, 2026

Community Affairs

Transcript Highlights:
  • And there was one speaker that started talking about medical-type needs for sickle cell.
  • Well, that's the population that sickle cell is in. So why wouldn't we address that need?
  • And there was one speaker that started talking about medical-type needs for sickle cell.
  • And there was one speaker that started talking about medical-type needs for sickle cell.
  • That's the population that sickle cell is in. So why wouldn't we address that need?
Bills: S0484 , S0698 , S0706 , S0968 , S1118 , S1122 , S1134 , S1320 , S1342 , S1548 , S1614
Summary: The committee heard several housing, local government, utility, and transparency bills. SB 1342 on transportation infrastructure and land development regulations, by Sen. Rouson, was presented as a housing-affordability measure modeled on the Live Local Act for transit corridors. After adopting an amendment that removed the bill’s compelling-governmental-interest language in enforcement provisions, the committee heard testimony from local-government and housing interests both supporting and opposing the bill’s zoning preemption approach. The bill was reported favorably. The committee also reported favorably CS/SB 1614, by Sen. Leek, which was amended to remove stormwater and code-enforcement spending provisions and to tighten restrictions on local governments seeking state appropriations after audits or without required affirmations. SB 1548, the next Live Local Act iteration by Sen. Claddie Ude, was also reported favorably; it expands where Live Local projects may be located and adds fair-housing protections. SB 968 on home backup power systems, by Sen. McLean, was reported favorably after testimony from builders and energy-related stakeholders, with the sponsor noting he was still working on amendments to refine permit provisions. The committee then approved CS/SB 698, by Sen. Martin, which allows building permits for single-family homes to be issued before septic permits are finalized if application has been made, while still requiring septic approval before occupancy. Builders testified that septic permit delays were causing lengthy project delays and contract cancellations. The committee also reported favorably SB 1320, by Sen. Martin, requiring county tax-increase referenda to include a Department of Financial Services spending analysis if available; the sponsor said the goal was to give voters more standardized fiscal information, while opponents argued existing law already provides similar transparency. SB 484, by Sen. Avila, on data centers, was reported favorably after an amendment adding a knowledge requirement to the foreign-country-of-concern service prohibition; the bill addresses local planning authority, nondisclosure agreements, utility tariff requirements, and water-use limits for large data centers. The committee also reported favorably SB 1118, by Sen. Avila, creating a one-year public-records exemption for data-center location and proprietary information, with testimony split between economic-development supporters and transparency concerns. Finally, the committee took up SB 706, by Sen. Mayfield, preempting naming of major commercial service airports to the state and designating Palm Beach International Airport as Donald J. Trump International Airport subject to federal and trademark conditions; it was reported favorably after questions about local input and airport naming. The committee then heard extensive public testimony on SB 1134, by Sen. Yarbrough, which would prohibit counties and municipalities from funding, promoting, or taking official actions related to DEI and would create penalties and a private right of action for residents. The sponsor argued the bill was aimed at preventing taxpayer-funded DEI programs and cited examples from Jacksonville and other jurisdictions; opponents said the bill was vague, overbroad, and would chill local programs, public education, and civil-rights-related activities. The transcript ends during continued public testimony on SB 1134, with no final committee action shown in the excerpt.
HI

Hawaii 2026 Regular Session

WAL Public Hearing - Thu Mar 19, 2026 @ 9:00 AM HST

Water & Land

Transcript Highlights:
  • with one important concept in this bill: that the shoreline should be managed as a connected coastal cell
Committee: House Water & Land
Summary: The Committee on Water and Land heard testimony on SB 5253 SD2 relating to conservation and SB 2401 relating to regional shoreline mitigation district, with the chair emphasizing short testimony limits and the need to finish before session. On SB 5253, DLNR said it stood on its written testimony and answered questions about the bill’s proposed nonprofit endangered species sanctuary. Members asked whether existing entities or agreements, such as land trusts, private landowners, and DLNR safe harbor agreements, could accomplish similar conservation goals without creating a new entity. DLNR said similar work already exists, but it was not aware of a comparable sanctuary model in the state. A member also questioned language suggesting for-profit businesses in the sanctuary, and DLNR said the intent appeared to be sales of outreach or similar materials, though it agreed that such activities could be handled by a nonprofit. The bulk of the hearing focused on SB 2401, which would create a regional shoreline adaptation/mitigation framework. The Department of the Attorney General said it had concerns about inconsistent use of the terms “mitigation” and “adaptation,” warning of possible title-subject issues. DLNR said it was neutral on the terminology and more concerned with the substance, and noted that the bill would not waive permits; any plan would still require environmental review and applicable state and county permits. DLNR also supported OHA’s recommendation to consider impacts on Native Hawaiian traditional and customary practices during regional planning, and said the bill’s language on temporary shoreline protection measures could help address the gap between emergency permits and longer-term planning while avoiding a hardening-only approach. The Office of Planning supported the regional planning concept but noted it is not a regulatory agency and would need to work with DLNR and the Land Board. OHA supported the bill’s planning-based approach but recommended amendments to require assessment of impacts on Native Hawaiian traditional and customary practices during plan development and to clarify that environmental review would still apply at the project level. Testifiers from the Ka‘anapali Steering Committee strongly supported the bill, saying it would provide a regional framework for ongoing erosion problems while preserving full regulatory authority and normal permitting, and they proposed amendments to standardize terminology, create a limited pathway for temporary shoreline protection, and address ownership and maintenance responsibilities. Members discussed the meaning of “mitigation” versus “adaptation,” the scope of shoreline hardening, and whether the bill would help the legislature take a broader, more holistic view of shoreline decisions. No votes or final actions were taken in the portion of the hearing provided.
CA
Transcript Highlights:
  • I'm here today on behalf of Networking California for Sickle Cell Care and the Sickle Cell Disease Foundation
  • I'm representing the Center for Inherited Blood Disorders and California Network for Sickle Cell Care
  • I'm representing the Center for Inherited Blood Disorders and California Network for Sickle Cell Care
  • cell.
  • Sickle cell in the state of California has a life expectancy of 43 years.
Summary: The Assembly Subcommittee on Health heard an overview of the California Department of Public Health budget, including a $5.1 billion department budget and 19 non-IT budget change proposals spanning environmental health, healthcare quality, infectious disease, healthy communities, health statistics, preparedness, and laboratory sciences. CDPH also presented estimates for WIC and the Genetic Disease Screening Program, both of which were described as relatively stable, with WIC food costs rising mainly due to inflation and participation holding near 1 million monthly participants. Members and public commenters raised support for several proposals, including funding for the California Reducing Disparities Project, AB 1264 implementation on school food standards, childhood lead poisoning prevention, the hospital bed capacity registry, sickle cell care networks, and WIC protections amid federal policy changes and shutdown-related uncertainty. Dr. Erica Pond then presented the 2026 State of Public Health report, highlighting major gains such as record-low mortality rates, all-time high life expectancy, and the first decline in overdose deaths in 14 years, while warning about persistent disparities in maternal and infant outcomes, rising severe maternal morbidity, and worsening mental and behavioral health trends, especially among younger adults. She emphasized racial and geographic inequities, the role of social drivers like poverty and education, and the importance of prevention investments through the Behavioral Health Services Act. Members discussed the need for upstream public health spending, environmental health preparedness, and how to translate data into action, while public comment largely focused on sustaining community-based prevention and equity programs. In a separate update on federal actions and public health partnerships, Dr. Pond and CDPH staff described California’s response to federal funding threats, vaccine policy changes, and measles outbreaks. They outlined new collaborations such as the West Coast Health Alliance, the Governor’s Public Health Alliance, the WHO outbreak network, and the FACT Coalition, along with CDPH’s process for reviewing and updating immunization and preventive service recommendations under AB 144. Members questioned the rise in measles and declining vaccination coverage, and CDPH said it is using trusted messengers and tailored outreach while continuing to evaluate federal recommendations. The committee then heard an ADAP estimate showing lower projected budget authority needs due to reduced caseload and one-time funding expiring, followed by public support for using ADAP rebate funds to expand HIV prevention, PrEP, testing, and disease intervention staffing. The final issue focused on public health information technology systems, including Sapphire, CalReady, CalConnect, CARE, MyTurn, MyCAVAC, and the digital vaccine record. CDPH explained how these systems support disease reporting, contact tracing, immunization tracking, vaccine ordering, and outbreak response, while the Department of Finance said only Sapphire and CalReady are funded in the Governor’s budget and the rest are under review because of the state’s budget deficit and declining utilization. Local health department representatives strongly opposed losing the systems, arguing that lower usage reflects post-pandemic conditions and that the tools save staff time, improve outbreak response, and prevent a return to manual spreadsheets and phone calls. Members echoed concern that cutting the systems would undermine public health capacity and waste prior state investment, and urged the administration to present a funding plan that matches its stated commitment to public health.
LA

Louisiana 2026 Regular Session

House of Representatives Apr 1st, 2026

Louisiana House Floor Meeting

Transcript Highlights:
  • gene therapies for sickle cell disease in patients 12 and older.
  • cell registry, that was 50 years after my mom passed away from sickle cell.
  • So thank you so much for the support when you hear me coming around for sickle cell.
  • So thank you so much for the support when you hear me coming around for sickle cell.
  • Phelps, I want to personally thank you for your efforts with sickle cell.
Bills: HR91 , HR92 , HR93 , HCR44 , HR84 , HR85 , HR86 , HR87 , HR88 , HR89 , HR90 , HCR42 , HCR43 , SCR21 , HB483 , HB484 , HB893 , HB1087 , HB1088 , HB1089 , HB1090 , HB1091 , HB1092 , HB1093 , HB1094 , HB1095 , HB1096 , HB1097 , HB1098 , HB1099 , HB1100 , HB1101 , HB1102 , HB1103 , HB1104 , HB1105 , HB1106 , HB1107 , HB1108 , HB1109 , HB1110 , HB1111 , HB1112 , HB1113 , HB1114 , HB1116 , HB1117 , HB1118 , HB1119 , HB1120 , HB1121 , HB1122 , HB1123 , HB1124 , HB1125 , HB1126 , HB1127 , HB1128 , HB1129 , HB1130 , HB1131 , HB1132 , HB1133 , HB1134 , HB1135 , HB1136 , HB1137 , HB1138 , HB1139 , HB1140 , HB1141 , HB1142 , HB1143 , HB1144 , HB1145 , HB1146 , HB1147 , HB1148 , HB1149 , HB1150 , HB1151 , HB1152 , HB1153 , HB1154 , HB1155 , HB1156 , HB1157 , HB1158 , HB1159 , HB1160 , HB1161 , HB1162 , HB1163 , HB1164 , HB1165 , HB1166 , HB1167 , HB1168 , HB1169 , HB1170 , HB1171 , HB1172 , HB1173 , HB1174 , HB1175 , HB1176 , HB1177 , HB1178 , HB1179 , HB1180 , HB1181 , HB1182 , HB1183 , HB1184 , HB1185 , HB1186 , HB1187 , HB1188 , HB1189 , HB1190 , HB1191 , HB1192 , HB1193 , HB1194 , HB1195 , HB1196 , HB1197 , HB1198 , HB1199 , HB1200 , HB1201 , HB1202 , HB1203 , HB1204 , HB1205 , HB1206 , HB1207 , HB1208 , HB1209 , HB1210 , HB1211 , HB1212 , HB1213 , HB1214 , HB1215 , HB1216 , HB1217 , HB1218 , HB1219 , HB1220 , HB1221 , HB1222 , HB1223 , HB1224 , HB1225 , HB1226 , HB1227 , HB1228 , HB1229 , HB1230 , HB1231 , SB1 , SB54 , SB82 , SB87 , SB92 , SB93 , SB99 , SB104 , SB113 , SB114 , SB115 , SB123 , SB129 , SB133 , SB161 , SB162 , SB224 , SB236 , SB275 , SB280 , SB289 , SB305 , SB310 , SB325 , SB330 , SB339 , SB350 , SB359 , SB382 , SB410 , SB412 , HCR10 , HB54 , HB55 , HB67 , HB73 , HB125 , HB133 , HB158 , HB168 , HB169 , HB191 , HB195 , HB205 , HB225 , HB245 , HB280 , HB283 , HB296 , HB319 , HB325 , HB339 , HB399 , HB407 , HB448 , HB482 , HB550 , HB591 , HB821 , HB826 , HB992 , HB995 , HB1085 , HB1086 , HR15 , HR20 , HCR14 , HCR6 , HCR19 , HB861 , HB889 , HB904 , HB907 , HB908 , HB929 , HB1009 , HB13 , HB23 , HB25 , HB32 , HB41 , HB90 , HB120 , HB121 , HB122 , HB127 , HB138 , HB139 , HB141 , HB179 , HB187 , HB213 , HB247 , HB286 , HB332 , HB344 , HB357 , HB367 , HB370 , HB462 , HB505 , HB527 , HB537 , HB605 , HB680 , HB681 , HB725 , HB780 , HB782 , HB847 , HB892 , HB911 , HB916 , HB1012 , HB81 , HB134 , HB154 , HB163 , HB170 , HB194 , HB217 , HB220 , HB254 , HB259 , HB290 , HB308 , HB311 , HB360 , HB382 , HB401 , HB410 , HB417 , HB463 , HB575 , HB592 , HB718 , HB723 , HB750 , HB755 , HB776 , HB812 , HB844 , HB882 , HB888 , HB961 , HB966 , HB980 , HB228 , HB289 , HB735 , HB796 , HB284 , HB301 , HB722 , HB468 , HB546 , HB746 , HB842 , HB923 , HB46 , HB166 , HB349 , HB352 , HB436 , HB588 , HB140 , HB429 , HB827 , HB953 , HB901 , HB9 , HB52 , HB58 , HB193 , HB400 , HB570 , HB577 , HB582 , HB733 , HB747 , HB868 , HB952
WA

Washington 2025-2026 Regular Session

Senate Transportation Feb 19th, 2026

Transcript Highlights:
  • We’re going to start with our work session on hydrogen fuel cell ferries.
  • We’re joined by the CEO of Switch Maritime, Elias Van Sickle. Thanks for joining us.
  • I’m joined here by Elias Van Sickle, our CEO and co-founder. We’ll go through a...
  • I’m joined here by Elias Van Sickle, our CEO and co-founder.
  • My name is Elias Van Sickle. I’m co-founder and CEO at Switch Maritime.
Summary: The Senate Transportation Committee met for a work session and public hearing on February 19, 2026. In the work session, Switch Maritime presented a proposal for hydrogen fuel cell ferries for Washington State, including a budget proviso directing the Joint Transportation Committee to study hydrogen propulsion and a lease model for future Washington State Ferries procurement. The company described its Sea Change vessel, said the design could be adapted for Washington routes such as San Juan Islands–Anacortes, and emphasized that hydrogen fueling could be delivered through a mobile supply chain without new charging infrastructure. Senators asked about vessel flexibility, size, hydrogen availability, and terminal compatibility. The committee also received an update from WSDOT on the new public-private partnership program authorized in 2025. Staff said the agency is developing a four-phase implementation process, including consultant selection, a steering committee, a program manual, stakeholder engagement, and candidate project identification, with a report due to the transportation committees on September 1, 2026 and program launch targeted for January 1, 2027. The presentation stressed that the program manual will provide flexibility within the statute and that legislative input is being sought on engagement and project timing. The public hearing was on Senate Bill 6352, an omnibus transportation resources bill that revises and expands provisions from last year’s ESSB 5801. Staff outlined sections covering a mobile driver’s license and ID card program, a reduced-fee ID card for older drivers, changes to alternative fuel and aviation taxes and fees, revised sales tax distributions for ferry and multimodal funding, transit and bicycle education grants, fish passage permitting, clean energy siting on WSDOT right-of-way, toll notice procedures, older driver safety outreach, traffic safety camera revenue sharing, and a delay to the tow-truck indigent impound reimbursement program. The prime sponsor highlighted two priorities: digital driver’s licenses and dedicated ferry funding. Testimony was mixed. Supporters included airlines and aviation groups backing mobile ID and repeal of the luxury aircraft tax, transit and bicycle safety advocates supporting grant flexibility and continued bike education funding, and ferry advocates supporting dedicated ferry revenue. Local governments, including Bellevue, Kenmore, and Tacoma, raised concerns about the traffic camera revenue change, saying the shift from net to gross revenue would reduce local safety funding and could discourage new camera programs. The Association of Washington Cities also warned about unintended consequences in the fish passage and traffic camera provisions. RV dealers sought a delay to the luxury vehicle tax, and peer-to-peer car-sharing platform Turo asked for clarification on documentation requirements. The committee took no final vote and announced it would consider executive action the following week.
TX

Texas 89th Regular

Public Health Apr 7th, 2025

Public Health

Transcript Highlights:
  • Health and Human Services to establish and maintain a sickle cell disease registry to aid in the cure
  • and treatment of sickle cell disease in Texas.
  • The cascade can happen slowly, the cascade can happen quickly. an elevated white blood cell count, fever
  • They include things like immune system, normal cell growth. digestive, bowel, bladder, neurological,
  • a significant number of professionals in this field that literally believe that is only a clump of cells
Committee: House Public Health
CA
Transcript Highlights:
  • I'm here today on behalf of Networking California for Sickle Cell Care and the Sickle Cell Disease Foundation
  • I'm representing the Center for Inherited Blood Disorders and California Network for Sickle Cell Care
  • were fortunate enough to establish 12 networks five years ago that are now caring for adults with sickle
  • cell.
  • Sickle cell in the state of California has a life expectancy of 43 years.
Keywords: 988, house, all
AR

Arkansas 2026 Regular Session

ALC-ADMINISTRATIVE RULES Mar 19th, 2026

ALC-ADMINISTRATIVE RULES

Transcript Highlights:
  • The first rule I'm presenting today is the cell and gene therapy model rule.
  • that allows us to enter into value-based payment arrangements with manufacturers of drugs to treat sickle
  • cell disease.
  • They do have significant value for patients with sickle cell... Medicaid.
  • They do have significant value for patients with sickle cell.
Keywords: 1204, all
AL

Alabama 2026 Regular Session

Alabama Senate Confirmations Committee Mar 18th, 2026

Confirmations

Transcript Highlights:
  • Alabama Sickle Cell Oversight and Regulatory Commission, Dr. Anum.
  • Sickle Cell Oversight is approved.
Keywords: 923, senate, all
OK

Oklahoma 2026 Regular Session

Joint Committee on Appropriations and Budget Apr 13th, 2026

Joint Committee on Appropriations and Budget

Transcript Highlights:
  • It appropriates various things for the blood clot registry and sickle cell research. Sterling, aye.
  • Appropriates various things for the blood clot registry, sickle cell research. ...the blood clot registry
  • , sickle cell research.
Summary: The Joint Committee on Appropriations and Budget met to consider a long agenda of appropriations, retirement COLAs, revolving funds, and limits bills. Early actions included Senate Bill 1144 and Senate Bill 1145, which provided cost-of-living adjustments for retired teachers and OPRS retirees, respectively, and Senate Bill 1146, 1147, 1148, and 1149, which extended similar retirement benefit increases or a one-time stipend for law enforcement, firefighters, judges, and certain retired police and firefighters. The committee also advanced bills funding the Pardon and Parole Board, OSBI cybercrimes and fraud work, juvenile medication, and several agency limits bills for Health Care Authority, Health Department, Mental Health and Substance Abuse Services, and DHS. Members also heard and passed a series of education, public safety, and economic development measures, including funding for school security at the School for Science and Math and the Schools for the Blind and Deaf, support for National Board certified teachers, and appropriations for the Rural Health Transformation Program, the Decennial Census Revolving Fund, Task Force One, and the Oklahoma State Bureau of Investigation forensic center. Several bills created or expanded revolving funds and financing tools, including military readiness and aviation funds, a taxpayer endowment trust fund, water infrastructure loan and REAP-related measures, and a revised non-coal mining fee structure. The committee also approved a bill increasing court reporter pay and another reducing employer contributions to the retirement system after it reached over 100% funding. There was notable discussion on a $5 million film-related pilot program for sitcom production, with questions about the amount and certification requirements, and on a rural economic development package that included money for the state fairgrounds and a university energy plant, which drew objections over whether those projects fit the intended purpose of rural prep funds. Other debated items included a bill directing funds to the Oklahoma Dream Act/Trump accounts, a bill rejecting judicial pay increases recommended by the Board of Judicial Compensation, and a proposal to move $200 million from the stabilization fund into a new Taxpayer Endowment Trust Fund. Most measures were reported out with due pass votes, though several drew dissenting votes, including the film bill, the fairgrounds/economic development bill, the water projects bill, and the trust fund and judicial pay measures. The committee adjourned after completing the agenda.
TX

Texas 89th Regular

State Affairs May 12th, 2025

State Affairs

Transcript Highlights:
  • Absolutely, sickle cell being a great example. That was the example I was going to give.
  • , say, the Tarrant County Public Health Department wanted to do a public awareness campaign about sickle
  • cell disease, you would assume that they, based on data about sickle cell disease, would be... who that
Bills: SB231 , SB667 , SB689 , SB825 , SB965 , SB992 , SB1059 , SB1220 , SB2368 , SB2601
Committee: House State Affairs
WA

Washington 2025-2026 Regular Session

Senate Transportation Feb 19th, 2026 at 04:00 pm

Transportation

Transcript Highlights:
  • We're going to start with our work session on hydrogen fuel cell ferries.
  • We're joined by the CEO of Switch Maritime, Elias Van Sickle, and Seamus Nolan, the Director of Commercial
  • I'm joined here by Elias Van Sickle, our CEO and co-founder.
  • My name is Elias Van Sickle. I'm co-founder and CEO at Switch Maritime.
  • So we would use the same liquid hydrogen technology, just larger and more fuel cell capacity.
Bills: SB6352
OK

Oklahoma 2026 Regular Session

Senate Legislative Session Apr 27th, 2026 at 01:30 pm

Oklahoma Senate Floor Meeting

Transcript Highlights:
  • Is there any understanding as it relates to those affected by sickle cell, the numbers in Oklahoma, those
  • affected by sickle cell as opposed to those affected with ALS?
  • I was curious as I know that as it relates to sickle cell, I know you've been very helpful in That regard
  • , this $1 million is maybe 6 times more than what is going to sickle cell this year.
  • cell disease and ALS.
MS

Mississippi 2026 Regular Session

MS House Floor - 3 February, 2026; 10:00 AM

Mississippi House Floor Meeting

Transcript Highlights:
  • mothers, transplant recipients, surgery patients, chronically transfused patients suffering from sickle
  • cell disease or thalassemia, and many others, it is imperative that we encourage more people to donate
  • transfused patients chronically transfused patients suffering<00:31:02.160><c> from</c><00:31:02.320><c> sickle
  • </c><00:31:02.680><c> cell</c><00:31:02.920><c> disease</c><00:31:04.040><c> or</c> suffering from sickle
  • cell disease or suffering from sickle cell disease or [snorts]<00:31:04.280><c> thas-</c> [snorts] thas
AR

Arkansas 2026 Regular Session

ALC-ADMINISTRATIVE RULES Mar 19th, 2026

ALC-ADMINISTRATIVE RULES

Transcript Highlights:
  • The first rule I'm presenting today is the cell and gene therapy model rule.
  • drugs to treat... ...enter into value-based payment arrangements with manufacturers of drugs to treat sickle
  • cell disease.
  • They do have significant value for patients with sickle cell.
  • Like every other part of the world, it's going off of the cell phone.
Summary: The Administrative Rules Subcommittee reviewed several agency rules and most were approved without objection. The Department of Agriculture repealed rules tied to the now-repealed Arkansas Catfish Processors Fair Practice Act. The Department of Human Services updated Medicaid policy to clarify child support enforcement treatment for pregnant women, remove the word “forcible” from rape/incest good-cause language, and eliminate a 90-day waiting period for ARKids B after loss of group coverage; members highlighted the significance of the language change and asked for a quick-reference eligibility chart. DHS Medical Services also received approval for a CMS cell and gene therapy model rule for sickle cell drugs and a technical Medicaid-assisted medication-assisted treatment update that was described as cost-neutral and non-substantive. The Department of Labor and Licensing presented several rules implementing recent acts and internal cleanup changes. These included procedures for local construction plan disputes under Act 591, Contractors Licensing Board amendments raising the restricted commercial license threshold from $750,000 to $1.5 million and allowing deferral of owner-complaint investigations during civil litigation, and a similar residential contractors change. The HVACR Licensing Board presented broader revisions under Act 746, including grammar and cleanup changes, elimination of the Class C license with transfer of existing holders to Class B, expansion of allowable work limits, a change to continuing education from four hours annually to eight hours per three-year code cycle, and clarification on training, child labor, and licensing issues. Several members questioned the practical impact of the HVAC changes, but the rule was approved. The committee also granted the Department of Inspector General’s request for exclusion from rulemaking reporting under Act 473, concluding that no rule was necessary because the act already defines the key terms and review process for foreign-adversary cultural exchange agreements. In addition, the Arkansas State Library’s report recommending continuation of its existing rules was accepted. During the status updates on outstanding 2023-session rulemaking, Education explained delays were due to overlapping 2025 amendments and the large volume of rules, while members expressed concern about the length of time since enactment; staff noted only a small number of 2023 rules remain outstanding. The meeting ended after written 2025-session updates were received with no further questions.
FL

Florida 2026 Regular Session

Community Affairs Feb 3rd, 2026

Community Affairs

Transcript Highlights:
  • cell are among African Americans; a local public education program targeted to gay and bisexual men,
  • Thank you. 98% of cases nationally for sickle cell are among African Americans; a local public education
  • And there was one speaker that started talking about medical-type needs for sickle cell.
  • Well, that's the population that sickle cell is in. So why wouldn't we address that need?
  • That's the population that sickle cell is in. So why wouldn't we address that need?
Keywords: 999, senate, all
Summary: The committee first postponed SB 1122, then took up SB 1342 on transportation infrastructure and land development regulations. Senator Rouson explained the bill as a housing-affordability measure modeled on the Live Local Act, aimed at reducing local land-use barriers near transit corridors. The committee adopted an amendment removing the compelling governmental interest standard from enforcement and litigation provisions, then approved the bill. Testimony included support from a county commissioner and concerns from the Florida League of Cities and a Republican executive committee about overriding local zoning and creating rigid standards near transit stops. Members then heard SB 1614, which would let local governments use excess Florida Building Code enforcement funds for stormwater repairs and restrict eligibility for certain state appropriations if a government has been audited or fails to affirm it has no excess funds. An amendment removed the stormwater and code-enforcement building provisions and tightened the appropriations restrictions; the bill was reported favorably. The committee also approved SB 1548, the next iteration of the Live Local Act, expanding qualifying projects on public land and near airports, limiting setback-based height restrictions, clarifying agricultural-use issues, and strengthening fair-housing protections. SB 968 on home backup power systems was also reported favorably, with the sponsor noting he was still working on amendments regarding permits for generators, windows, and doors. The committee next approved SB 698, allowing building permits for single-family homes to be issued after septic permit application rather than waiting for septic approval, with builders and industry representatives citing long delays and lost contracts. SB 1320, requiring county tax-referendum ballot questions to include a Department of Financial Services spending analysis if available, also passed after debate over whether it duplicated existing audit transparency requirements. SB 484 on large-scale data centers was reported favorably after an amendment added a knowledge requirement to the prohibition on service to certain foreign-country-linked customers; testimony focused on electricity costs, water use, NDAs, and ratepayer protections. SB 1118, creating a one-year public-records exemption for data-center site plans and proprietary information, was also approved despite concerns about secrecy and local officials appearing to conceal development plans. Finally, the committee took up SB 706, which preempts naming of major commercial service airports to the state and would rename Palm Beach International Airport as Donald J. Trump International Airport subject to federal and trademark approval; it was reported favorably after questions from members about local input. The last major item was SB 1134 on official actions of local government related to DEI, which drew extensive questioning and public testimony. The sponsor said the bill would bar counties and municipalities from funding, promoting, or staffing DEI offices or programs, with violations treated as misfeasance or malfeasance and enforceable by resident lawsuits; supporters framed it as a merit-based, anti-bureaucracy measure, while opponents argued it was vague, overbroad, and would chill civil-rights, health, education, and cultural programming. The transcript ends during public testimony on SB 1134, before any final action on that bill is shown.
MD

Maryland 2026 Regular Session

Senate Floor Session, 3/10/2026 #1

Maryland Senate Floor Meeting

Transcript Highlights:
  • Derek Robinson, the president of the Maryland Sickle Cell Disease Association.
  • President, of three sons, two of whom live with sickle cell.
  • Advocacy Maryland Alliance for Advocacy for Sickle Cell.
  • President, of three sons, two of whom live with sickle cell.
  • Advocacy Maryland Alliance for Advocacy for Sickle Cell.
AR

Arkansas 2026 1st Special Session

ALC-ADMINISTRATIVE RULES Mar 19th, 2026

ALC-ADMINISTRATIVE RULES

Transcript Highlights:
  • The first rule I'm presenting today is the cell and gene therapy model rule.
  • drugs to treat... ...enter into value-based payment arrangements with manufacturers of drugs to treat sickle
  • cell disease.
  • They do have significant value for patients with sickle cell.
  • It's like every other part of the world: it's going off of the cell phone.
Summary: The Administrative Rules Subcommittee reviewed several agency rules and most were approved without objection. The Department of Agriculture moved to repeal rules tied to the now-repealed Arkansas Catfish Processors Fair Practice Act. The Department of Human Services updated Medicaid policy to clarify that pregnant women may still be referred to child support enforcement but will not be sanctioned during pregnancy and the 60-day postpartum period, removed the word “forcible” from rape/incest good-cause language, and eliminated a 90-day waiting period for ARKids B when group health coverage ends. DHS also received approval for a CMS cell and gene therapy model for sickle cell disease and a technical Medicaid medication-assisted treatment update that does not change coverage. The Department of Labor and Licensing presented several rules. One created procedures for the department to issue interpretations in local construction plan disputes under Act 591 of 2025. The Contractors Licensing Board and Residential Contractors Committee amended rules to raise the restricted commercial license threshold and light building project limit from $750,000 to $1.5 million, and to allow deferral of owner-complaint investigations while related civil litigation is pending. The HVACR Licensing Board presented broader cleanup and policy changes under Act 746 of 2025, including eliminating the Class C license by moving those holders into Class B, expanding work limits for Class A and B licensees, changing continuing education to eight hours per three-year code cycle, and keeping annual license renewal. Members asked detailed questions about impacts on businesses, training, youth working with parents, and whether any unintended burdens were created; the board said it had notified licensees and had received little pushback. The committee also granted the Department of Inspector General’s request for exclusion from rulemaking reporting for Act 473 of 2025, concluding that the statute was sufficiently detailed and did not require additional rules. In addition, the Arkansas State Library’s report was accepted, with the Department of Education stating that the library’s three existing rules should remain in effect. During the update on outstanding 2023-session rulemaking, Education explained that many delayed rules were held back because they were likely to be amended again in 2025, and members expressed concern about the length of time some rules have remained unfinished. The meeting ended after written 2025 rulemaking updates were noted, with no further action taken.
TX

Texas 89th Regular

Health Care Affordability, Select Apr 30th, 2026

Health Care Affordability, Select

Transcript Highlights:
  • So, you know, we heard about your family member with sickle cell.
  • They know, you know, if you have somebody with sickle cell, you know what you need more; you know how
  • It can cure sickle cell. It's very intensive. All accounts, life-saving. It can cure sickle cell.
  • Not everybody that has sickle cell is eligible to get this treatment.
  • And the hospital billed the state—again, not Texas—$7.8 million for the sickle cell treatment.
Keywords: 1184, house, all