Video & Transcript : 'sickle cell disease' :

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CA

California 2025-2026 Regular Session

Assembly Budget Committee Jun 15th, 2026

Transcript Highlights:
  • I do want to start by thanking the Black Caucus and the Legislature for funding the sickle cell centers
  • We definitely need to have high-quality care for sickle cell warriors.
  • request, because Cayenne Wellness Center is the statewide community-based organization that gets sickle
  • cell warriors to and from their doctor's appointments and provides the no-cost... ...gets sickle cell
  • huge appreciation for maintaining the public health information technology systems, as well as the disease
Summary: The Assembly Budget Committee met to consider the 2026 Budget Act, which leaders said was the negotiated compromise with the Senate and was expected to move to the floor that evening. Opening remarks emphasized that the plan balances the budget over two years, reduces the structural deficit, and builds reserves, while also protecting core services in the face of federal cuts. Jason Sisney outlined the legislative budget framework and the likely floor bills, including AB 109, SB 110, SB 122, and SB 125. Department of Finance representative Eric Khali said the administration appreciated the two-year balanced approach and supported the modification in SB 122, while noting the package uses additional revenues and new spending to soften or reject some proposed cuts. Most of the discussion focused on major spending areas. Members and subcommittee chairs highlighted protections and additions for health care and human services, including rejecting the proposed Medi-Cal asset limit change, delaying premium increases, restoring clinic and dental funding, supporting distressed hospitals and county indigent care, and expanding county eligibility staffing to handle H.R. 1-related workload. Education members described record or expanded support for TK-12 schools, child care, special education, community colleges, teacher recruitment, and higher education, including a change to extend Cal Grant eligibility to age 30 for some community college students. Housing and homelessness funding was increased for HAP, multifamily housing, and the low-income housing tax credit, while public safety members pointed to investments in victims’ services, restorative justice, and prison closure savings. Several members also raised concerns or priorities tied to the budget deal. Some praised the package as a moral document that protects vulnerable Californians, immigrant communities, LGBTQ residents, seniors, and people with disabilities. Others noted unresolved issues, including the MCO tax’s impact on districts, the need for more support for local journalism, arts, biotech R&D incentives, transit and GGRF-related concerns, and the need for continued work on Prop. 98 and long-term fiscal resilience. The vice chair cautioned that despite the current progress, the state remains vulnerable to revenue volatility and warned that the budget should build more resilience against a possible downturn. No formal vote was taken in the portion provided, but the committee was preparing the budget package for floor action and final negotiations.
TX
Transcript Highlights:
  • Bartlett, I've read through a number of pieces of literature that there are about 1,200 diseases now
  • The disease of COVID has become less virulent over time. You're probably aware of that.
  • cell, all sorts of other things, and that also viruses sometimes lead to cancer.
  • It's a method of delivering temporary instructions to cells. mRNA is a platform, not a product.
  • It's a method of delivering temporary instructions to cells.
Summary: The committee first reopened testimony on House Bill 2216, which would strengthen child welfare requirements by expanding “active efforts” to help families avoid removal and support reunification, while also raising standards related to removals and terminations. Supporters from child welfare and family defense groups said the bill would better protect families and align Texas more closely with ICWA-style principles, but several warned it would require significant new funding, staffing, and community services such as mental health care, housing, child care, and substance use treatment. The committee then left HB 2216 pending. The committee next heard Senate Bill 1782, aimed at boarding and group homes. Senator Miles said the bill closes enforcement gaps left by prior law by requiring retention of background-check records and creating misdemeanor penalties for failing to conduct or keep them, or for knowingly hiring people with serious convictions. Harris County sheriff’s investigators testified in support, describing illegal boarding homes, operators who evade permits and background checks, and exploitation of vulnerable residents; the bill was left pending. The committee also took up Senate Bill 481 on emergency preparedness for nursing facilities and assisted living facilities, adopted a new committee substitute that softened some requirements and removed the fiscal note, and left the bill pending. The committee then heard House Bill 388, which would require the Texas Department of Insurance to create a single standardized coordination-of-benefits form for dual health plans to reduce errors and surprise bills; it was left pending. Senate Bill 1590 would move paternity registry searches for adoptions to an electronic process with a 10-day target, and House Bill 2809 would track child suicide attempts in managing conservatorship and require related reporting and parental notice; both were left pending. The committee also heard Senate Bill 1887, which would prohibit administering mRNA-containing products for immunization for 10 years, with exceptions for cancer and genetic disorders. Supporters argued the bill was needed for safety, informed consent, and medical freedom, while opponents from the medical, research, and public health communities said mRNA vaccines are well-studied, save lives, and that the bill would harm access, research, and Texas’s biotech economy. The bill remained under discussion as testimony concluded.
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.
CA

California 2025-2026 Regular Session

Senate Insurance Committee Jun 24th, 2026

Insurance

Transcript Highlights:
  • ... ...for individuals who carry genetic traits associated with Tay-Sachs, sickle cell, thalassemia,
  • Supporters argue that genetic testing is different because a person may never develop a disease based
  • Supporters argue that genetic testing is different because a person may never develop a disease based
  • But consider that doctors use genetic tests to make medical Disease based on genetics.
  • There's no development or course of disease or a disorder manifested in a patient yet.
Committee: Senate Insurance
FL

Florida 2025 Regular Session

October 8, 2025 - 10:30 AM

Transcript Highlights:
  • They helped by screening for risk for diagnosing disease. Predicting a response to treatment.
  • Managing therapy and monitoring weather disease is coming back for responding.
  • We're genetic disorders, pharmacogenomics cardiovascular diseases, infectious disease, prenatal, reproductive
  • cell and on other other kind of chronic illnesses. >> You're recognized.
  • Clyde Disease is also quite broad and all throughout Florida.
WA

Washington 2025-2026 Regular Session

House Health Care & Wellness Feb 18th, 2026 at 01:30 pm

Health Care & Wellness

Transcript Highlights:
  • The bill also requires that for health technologies that relate to a life-threatening or rare disease
  • rare disease community as a co-founder of the Northwest Rare Disease Coalition.
  • Rare disease families do not live typical lives. Our medical journeys are not typical.
  • For rare diseases, that is often impossible or unethical.
  • And again, make an exception for rare disease patients whose lives depend on it.
Bills: SB5915 , SB5988 , SB6025 , SJM8002
CA

California 2025-2026 Regular Session

Assembly Floor Session Feb 23rd, 2026

California House Floor Meeting

Transcript Highlights:
  • Marilyn Hughes Gaston, who fought to make sickle cell disease screening routine at birth, saving countless
  • As the Vice Chair of the Rare Disease Caucus, I am proud to rise today to introduce ACR 132, Rare Disease
  • diseases.
  • someone with a rare disease.
  • Rare Disease Day is observed on the last day of February to raise awareness about rare diseases and their
FL

Florida 2026 Regular Session

Appropriations Feb 12th, 2026

Appropriations

Transcript Highlights:
  • It clarifies and codifies the definition of heart disease so that it is consistent with medical practice
  • It clarifies and codifies the definition of heart disease to one that is consistent with medical practice
  • It clarifies and codifies the definition of heart disease to one that is consistent with medical practice
Bills: S0330 , S0474 , S0694 , S1120 , S1216 , S1366 , S1442 , S7018
TX
Transcript Highlights:
  • The cause and manner of his death were originally ruled natural due to sickle cell.
  • cell anemia.
  • He didn't have the disease; he only had the trait.
  • phone... paying for someone's cell phone off a certain tower where a crime took place.
  • Frankly, drug dealers have traded in the street corner for their cell phones.
CA
Transcript Highlights:
  • so much for maintaining the investments on both the public health information technology and the disease
  • I'm here on behalf of the Sickle Cell Disease Foundation.
CA
Transcript Highlights:
  • so much for maintaining the investments on both the public health information technology and the disease
  • I'm here on behalf of the Sickle Cell Disease Foundation.
Summary: The Senate Budget Subcommittee No. 3 on Human Services held its final hearing on the budget, with the chair framing the Senate’s plan as a counterproposal that rejected major cuts and preserved revenues. Public comment was overwhelmingly supportive of the subcommittee’s actions, especially on Medi-Cal, IHSS, PACE, behavioral health, child care, CalFresh outreach, immigrant legal services, and long-term care. Testimony from disability, aging, county, health plan, provider, labor, and advocacy groups urged the committee to keep rejecting asset tests, immigrant coverage reductions, IHSS cost shifts, PACE rate cuts, and behavioral health reductions, while supporting mobile crisis, 988, Title IV-E workforce funding, and the “Be Home Soon California” proposal to expand home- and community-based care. Several speakers also pressed for additional or related funding and policy changes, including county alternatives for people losing Medi-Cal under federal HR1-related changes, more support for public hospitals and indigent care, CalFresh and Cal Food investments, child care slots and COLAs, dental rate cut delays, and expanded immigration legal and food assistance. Others thanked the committee for restoring or preserving funding for behavioral health innovation and advocacy grants, public health IT and disease investigation, diaper banks, hearing aids for children, and distressed hospital loans. The committee also heard concerns about fee-for-service shifts, outpatient dialysis coverage, and other implementation details, with some groups asking for trailer bill language or guardrails. After public comment, the subcommittee took three votes on large blocks of budget items. The first block of consent items passed 3-0, the second block passed 2-1, and the final block passed 2-0, with the chair announcing that the items were approved and out of committee. The hearing then adjourned.
AL

Alabama 2025 Regular Session

Alabama House Ways and Means General Fund Committee Apr 9th, 2025

Ways and Means General Fund

Transcript Highlights:
  • Those are the two areas in which we have occupational diseases.
  • But those diseases don't make themselves immediately manifest.
  • or that disease.
  • But for different diseases, they said a minimum latency phase.
  • Pulmonary fibrosis is a non-cancer disease that has a life expectancy of 3 disease that has a life expectancy
Bills: HB227 , HB255 , HB465 , HB472 , HB482 , HB483 , HB526 , HB529 , HB484
CA

California 2025-2026 Regular Session

Assembly Floor Session Feb 23rd, 2026

California House Floor Meeting

Transcript Highlights:
  • Marilyn Hughes Gaston, who fought to make sickle cell disease screening routine at birth, saving countless
  • As the Vice Chair of the Rare Disease Caucus, I am proud to rise today to introduce ACR 132, Rare Disease
  • diseases.
  • someone with a rare disease.
  • Rare Disease Day is observed on the last day of February to raise awareness about rare diseases and their
Summary: The Assembly met with a quorum call at the start, then proceeded with Black History Month observances, including a libation ceremony, the Pledge of Allegiance, and remarks emphasizing remembrance, ancestry, and the importance of honoring Black history. The chamber also handled routine procedural matters, including dispensing with the journal, re-referring certain Senate budget items to the Budget Committee, and allowing guest introductions and other unanimous-consent requests. The main floor action was on Assembly Concurrent Resolution 134, recognizing Black History Month. Members from multiple caucuses spoke in support, highlighting the historical contributions of Black Americans, the ongoing effects of slavery and segregation, the need to protect voting rights and education, and the importance of solidarity across communities. The resolution was adopted by voice vote after 74 co-authors were added. The Assembly also adopted Assembly Concurrent Resolution 132, declaring February 28 as Rare Disease Day. Members shared personal stories about ALS and other rare diseases, described barriers to diagnosis, treatment, and insurance coverage, and called for more research and support. The resolution received broad bipartisan support, with 71 co-authors added before adoption by voice vote. The chamber then recognized a series of Black History Month Unsung Heroes honorees, including community leaders, health professionals, advocates, and public servants, and later heard additional guest introductions. The meeting concluded with adjournments in memory of Peyton Trilling and John Jackson, followed by announcements and adjournment until February 26 at 9 a.m.
AL

Alabama 2026 Regular Session

Alabama House Feb 19th, 2026

Alabama House Floor Meeting

Transcript Highlights:
  • This disease impacts families.
  • </c> this disease impacts families. this disease impacts families.
  • Cell Oversight and Regulatory Commission. >> Yes, sir. >> Thank you, Mr.
  • cell and the impact that it has on the African-American community. >> Absolutely.
  • And I say that because it is certainly a concern for me and many others as it relates to sickle cell
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.
TX

Texas 89th Regular

Insurance May 7th, 2025

Insurance

Transcript Highlights:
  • It is used to diagnose, monitor, and treat a variety of conditions including cancer, heart disease, and
  • And we now have that technology with deceased donor cell-free DNA that is now widespread. ...and standard
  • get medical insurance to cover general anesthesia for my patients suffering from significant dental disease
Committee: House Insurance
TX

Texas 89th Regular

89th Legislative Session Jun 1st, 2025

Texas House Floor Meeting

Transcript Highlights:
  • and/or end-stage renal disease will now be able to live their final years with dignity.
  • You will notice that Crohn's disease is absent, but that was a drafting error.
  • While we were not able to find agreement on degenerative disc disease and glaucoma.
  • Degenerative diseases will have access sooner rather than later?
  • Other devices that are made to look like other products, whether it's a purse, a cell phone, or a mini
Bills: HCR158 , HCR159 , HCR160 , HCR161 , HCR162 , HCR163 , HCR164 , HR174 , HR427 , HR790 , HR810 , HR857 , HR866 , HR882 , HR883 , HR962 , HR966 , HR1001 , HR1045 , HR1085 , HR1097 , HR1127 , HR1138 , HR1141 , HR1150 , HR1152 , HR1292 , HR1296 , HR1304 , HR1305 , HR1306 , HR1308 , HR1309 , HR1310 , HR1311 , HR1312 , HR1313 , HR1315 , HR1317 , HR1318 , HR1320 , HR1321 , HR1322 , HR1323 , HR1324 , HR1325 , HR1327 , HR1328 , HR1329 , HR1330 , HR1331 , HR1332 , HR1333 , HR1334 , HR1335 , HR1338 , HR1340 , HR1341 , HR1342 , HR1343 , HR1344 , HR1345 , HR1346 , HR1347 , HR1348 , HR1349 , HR1352 , HR1353 , HR1354 , HR1355 , HR1358 , HR1359 , HR1360 , HR1361 , HR1362 , HR1363 , HR1364 , HR1365 , HR1366 , HR1368 , HR1369 , HR1370 , HR1380 , HR1383 , HR1384 , HR1385 , HR1386 , HR1387 , HR1388 , HR1389 , HR1390 , HR1392 , HR1393 , HR1396 , HR1397 , HR1398 , HR1399 , HR1400 , HR1402 , HR1403 , HR1404 , HR1405 , HR1406 , HR1407 , HR1408 , HR1409 , HR1410 , HR1411 , HR1412 , HR1413 , HR1414 , HR1415 , HR1417 , HR1418 , HR1419 , HR1420 , HR1421 , HR1422 , HR1424 , HR1425 , HR1426 , HR1427 , HR1428 , HR1429 , HR1430 , HR1431 , HR1432 , HR1433 , HR1434 , HR1435 , HR1436 , HR1437 , HR1438 , HR1440 , HR1441 , HR1442 , HR1443 , HR1444 , HR1445 , HR1447 , HR1448 , HR1449 , HR1450 , HR1452 , HR1453 , HR1454 , HR1455 , HR1456 , HR1458 , HR1459 , HR1460 , HR1461 , HR1462 , HR1463 , HR1464 , HR1465 , HR1466 , HR1467 , HR1469 , HR1470 , HR1471 , HR1472 , HR1473 , HR1475 , HR1477 , HCR132 , HCR154 , HR17 , HR49 , HR170 , HR275 , HR355 , HR356 , HR364 , HR369 , HR672 , HR690 , HR755 , HR756 , HR759 , HR762 , HR763 , HR781 , HR785 , HR848 , HR1240 , HR1265 , HR1303 , HR1307 , HR1314 , HR1316 , HR1319 , HR1326 , HR1336 , HR1337 , HR1350 , HR1351 , HR1367 , HR1371 , HR1372 , HR1373 , HR1374 , HR1375 , HR1376 , HR1377 , HR1378 , HR1379 , HR1382 , HR1391 , HR1395 , HR1451 , HR1457 , HR1468 , HR1474 , HR1476 , SB1637 , SB2878 , HB2885 , HB2017 , HB5246 , SB8 , SB2308 , SB1405 , HB 119 , SB3059 , SB15 , SB568 , SB2900 , HB3642 , HB3909 , SB268 , HB493 , SB2217 , HB2516 , SB650 , HB2963 , SB1610 , HB705 , SB2972 , SB1540 , HB40 , SB2753 , SB1660 , SB2024 , HB1545 , HB46