Video & Transcript : 'genetic disorder' :

Page 10 of 223
TX

Texas 89th Regular

State Affairs Apr 7th, 2025 at 03:30 pm

State Affairs

Transcript Highlights:
  • They led to 19.2 million people suffering from cannabis use disorder in 2020.
  • I was diagnosed with Autism Spectrum Disorder. order and ADD as a child.
  • I have greatly suffered from anxiety. attacks, depression, and pain from a genetic disorder.
  • , they can include major depression, post-traumatic stress disorder, or generalized. anxiety disorder
  • I have a family history. of mental illness, including bipolar disorder.
Bills: HB 28 , SB 3
Committee: House State Affairs
Summary: The meeting featured significant discussions regarding HB28, where the chair outlined the plans to bring forward a substitute for the bill. The chair emphasized the importance of maintaining order and decorum during the proceedings. Members engaged in deliberations, and a number of public witnesses were invited to testify, thereby enriching the discussion around the bill. This interaction provided valuable insights into public sentiment regarding the issues at hand.
PA

Pennsylvania 2025-2026 Regular Session

House Session (Jun 29 2026)

Pennsylvania House Floor Meeting

Transcript Highlights:
  • NF is a group of genetic disorders that cause tumors to grow on nerves throughout the body, and if a
  • The disorders that cause tumors to grow on nerves throughout the body.
  • NF affects approximately 1 in 3,000 people worldwide, making it one of the most common rare genetic disorders
Summary: The House convened with prayer, the Pledge of Allegiance, journal approvals, quorum call, and a series of guest recognitions, including students, interns, local officials, and advocates visiting the chamber. Members also announced caucus and committee meetings, and the House recessed before returning later in the day for floor action. After reconvening, the House adopted several committee reports and then considered a series of resolutions and bills. It adopted House Resolution 462, designating May 17, 2026, as World Neurofibromatosis Awareness Day, and House Resolution 553, designating May 19, 2026, as Pontian Greek Genocide Remembrance Day, both by 200-2 votes. The chamber also agreed to House Bill 733 on marriage ceremony law, House Bill 2529 on scheduling metatomidine as a Schedule 3 controlled substance, and Senate Bill 1294 on civil penalties for unlicensed commercial driving schools. The House then debated House Bill 2359 on data center nondisclosure agreements and related amendments. One amendment requiring hyperscale data centers to pay their own energy and infrastructure costs failed on a 101-101 tie, while another amendment to make the bill effective immediately passed 201-1 and a third amendment to protect trade secrets failed 87-115. The bill itself was agreed to after amendment. The House also approved House Bill 2455 on collective bargaining rights for Pittsburgh school administrators, House Bill 2499 on State Workers Insurance Fund investment authority, Senate Bill 604 joining the Counseling Compact, and House Bill 1006 on penalties against abusive towing practices, with one agreed-to amendment added. Several measures then passed finally by recorded vote: House Bill 2014 on opportunities for minors in emergency service organizations, House Bill 2037 on cryptocurrency-related ethics restrictions for public officials, House Bill 2512 prohibiting ride-share pricing based on certain device conditions, House Bill 2644 authorizing capital bridge projects, and House Bill 2559 on Millersville University and other conveyances. House Bill 2559 drew floor criticism from Representative Conklin over the state land conveyance process, though it still passed 154-48. Before adjournment, the House recommitted several bills to Appropriations, removed additional Senate bills from the table calendar, and adjourned until June 30, 2026, at 11 a.m.
MN
Transcript Highlights:
  • fraud could end up in your pocket, plus the push to protect more Minnesotans from a rare but deadly disorder
  • 25:59.880><c> go</c><00:26:00.080><c> home</c><00:26:00.200><c> and</c><00:26:00.360><c> make</c> disorder
  • they said go home and make disorder they said go home and make memories<00:26:01.440><c> right</c><00
  • <00:26:45.679><c> gene</c><00:26:45.960><c> therapy</c><00:26:46.279><c> and</c><00:26:46.440><c> genetic
  • </c> ascendency of gene therapy and genetic ascendency of gene therapy and genetic testing<00:26:47.880
Keywords: 1187, senate, all
TX

Texas 89th Regular

State Affairs Apr 7th, 2025

State Affairs

Transcript Highlights:
  • As far as genetic predisposition to psychosis, you’re welcome. We appreciate it. It is genetic.
  • I was diagnosed with autism spectrum disorder and ADD as a child.
  • I have greatly suffered from anxiety attacks, depression, and pain from a genetic disorder.
  • And those psychiatric disorders, they can include major depression, post-traumatic stress disorder, or
  • generalized anxiety disorder.
Bills: SB 3 , HB28 , SB3
Committee: House State Affairs
MN
Transcript Highlights:
  • considered</c> It is no wonder that Abby Meyer, the founder of the National Organization for Rare Disorders
  • of the National Organization<00:03:51.519><c> for</c><00:03:51.720><c> rare</c><00:03:51.959><c> disorders
  • </c><00:03:52.519><c> once</c> Organization for rare disorders once Organization for rare disorders once
  • this crazy cutting-edge technology and giving real, tangible advice as I continue to work in the genetic
  • tangible advice as I continue to work in tangible advice as I continue to work in the<00:10:44.600><c> genetic
Keywords: 919, house, all
Summary: The committee heard House File 1501, which would fund the Minnesota Rare Disease Advisory Council and make the current fiscal year 2025 budget its permanent base. Representative Murphy said the bill would provide about $342,000 in general fund money for the 2026-27 cycle and argued that the council helps shorten diagnosis times, support research, and keep Minnesota a leader in rare disease work. Erica Barnes, the council’s executive director, testified in support and explained that the council was established in 2022 to improve care for the estimated one in 10 Minnesotans living with a rare disease. She said the council needs the full $668,000 level it operated with this year to maintain its statutory duties, noting that the current ongoing base is about $326,000 and that the extra funding was previously one-time money. Barnes described the barriers faced by rare disease patients, including long diagnostic delays, limited provider knowledge, and the fact that only a small share of rare diseases have FDA-approved treatments. She said rare disease care is costly to the health system and that the council has used prior funding to convene the community more regularly and carry out its work. Representative Leing questioned why the budget should be doubled and asked what additional work the council would do with the higher amount; Barnes responded that without the larger ongoing appropriation the council would fall back to 1.8 FTE and would have to stop some programs. Representative Hingson Jger spoke in support, saying the council’s collaboration has been valuable for policy work in the genetic and rare disease space. In closing, Murphy emphasized Minnesota’s leadership in rare disease and shared a personal story about how diagnosis and treatment changed his family’s life. No public testimony was offered. The chair then laid House File 1501 over for possible inclusion in the omnibus bill.
TX

Texas 89th Regular

S/C on Disease Prevention & Women's & Children's Health Apr 17th, 2025

S/C on Disease Prevention & Women's & Children's Health

Transcript Highlights:
  • provides intensive treatment for individuals who are struggling with mental health and substance abuse disorders
  • That 70% of participants in PHPs for mood disorders experience a significant symptom improvement within
  • Could you tell me what percentage of individuals with obesity in the country are influenced by genetics
  • Most of the evidence, depending on the method you use for the research, indicates that genetics drives
  • It's hard for me to believe it's solely genetic when I look at the tremendous uptick in obesity rates
MO

Missouri 2026 Regular Session

Budget Feb 9th, 2026

Budget

Transcript Highlights:
  • That moves us to page 94 for the Substance Use Disorder Grant Program Administration.
  • That brings us to page 99, which is the Substance Use Disorder Grant Program.
  • The Substance Use Disorder Grant Program awards...
  • Page 184 is the Genetics and Newborn Health Services core.
  • the best possible health for those born with rare and certain genetic disorders.
Committee: House Budget
Summary: The committee heard the Missouri Department of Health and Senior Services present its FY 2027 budget request, with Director Sarah Wilson and budget staff describing the department’s mission, major divisions, and the impact of federal funding shifts, especially the FMAP change that will shift costs to general revenue. Wilson emphasized prevention, public health infrastructure, workforce capacity, and data modernization, while several members praised the department’s responsiveness and cost-cutting efforts. The discussion repeatedly focused on lapses, excess authority, and the department’s stated practice of spending federal and other funds before general revenue where possible. Members asked detailed questions about local public health agency support, nutrition programs, rural health and primary care, newborn screening, the state public health lab, and the department’s use of flexibility and reallocations. There was extended discussion of substance use disorder funding: the department explained that some funding is being reduced in its own budget because transfer authority is being added for the Department of Mental Health and the Department of Corrections, while some other SUD-related lines are actual reductions. Members also questioned tobacco prevention and cessation cuts, maternal and infant health programs, fetal infant mortality review, and minority health initiatives, with staff explaining program purposes and noting that some reductions were tied to excess authority or to moving programs to other departments. The committee also reviewed specific operational items such as the Health Initiatives Fund transfer, debt offset escrow for loan repayment defaults, donated funds authority, emergency preparedness, environmental health, health informatics, HIV/STI/hepatitis services, local public health incentives, and the COVID/ARPA authority reductions. Several members requested follow-up information on vacancies, lapse trends, grant spending plans, and program details. No final vote or formal action was taken in the portion provided; the chair recessed briefly and the hearing continued with additional budget testimony.
MO

Missouri 2026 Regular Session

Health and Mental Health Apr 23rd, 2026 at 08:30 am

Health and Mental Health

Transcript Highlights:
  • However, and this is kind of where I'm going, is there's a genetic mutation.
  • Some people call it a disorder. I would say it's more of a mutation. It's MTHFR.
  • And this is a genetic disorder or mutation that prevents someone from processing folic acid, vitamin
  • So how is your legislation monitoring that genetic condition and the concerns that have been brought
Keywords: 959, house, all
FL

Florida 2026 Regular Session

Appropriations Committee on Criminal and Civil Justice Feb 5th, 2025

Appropriations Committee on Criminal and Civil Justice

Transcript Highlights:
  • , but alcohol use disorders as well.
  • You will see 59% are opioid use disorder, around 29% are alcohol use disorder, and then about 13% are
  • and also with mental health disorders as well.
  • and also with mental health disorders as well.
  • live with substance use disorder disease.
Summary: The Appropriations Committee on Criminal and Civil Justice met to continue its review of performance measurement in the criminal justice system. The first presentation, from State Courts Administrator Eric McClure, described how the court system uses multiple data sources to track filings, dispositions, clearance rates, workload, and support services, and how those data inform judge need, budget requests, resource allocation, and court administration. He also discussed ongoing efforts to improve case-level reporting, the use of case management systems in trial and appellate courts, and performance efforts in problem-solving courts and civil case management. McClure noted that the legislature provides dedicated funding for problem-solving courts and for medication-assisted treatment, and that the courts are required to report outcomes and monitor compliance with contract requirements. Melanie Brown-Whor of the Florida Behavioral Health Association then reviewed the medication-assisted treatment program funded through the courts budget. She said the program combines medication with counseling and behavioral supports, serves people involved in or at risk of criminal justice involvement, and has expanded over time to include additional medications and more counties. She reported improved engagement and retention, with more than 10,000 people screened over five years, about 9,200 receiving medication, and over 6,600 successfully discharged. Senators asked about racial and ethnic demographics, hospital referrals, and how services are delivered; Brown-Whor explained that local community providers deliver treatment under contract and that the program is working to improve data reporting and consistency. The Department of Law Enforcement then presented on investigations, forensics, and criminal justice information services. Deputy Commissioner Vaden Pollard outlined FDLE’s strategic plan and major investigative priorities, including cybercrime, targeted violence, crimes against children, mutual aid, and the SAFE fentanyl eradication program. He said SAFE has led to major seizures, arrests, and a reported decline in fentanyl deaths. Director Jason Bundy described FDLE’s forensic laboratory operations, DNA and rapid DNA capabilities, cold case and missing persons work, and the staffing and turnaround-time challenges tied to complex evidence testing. Director Lucy Saunders reviewed FDLE’s criminal history, biometric, incident-based crime reporting, and criminal justice transparency systems, noting that Florida is still transitioning agencies from summary reporting to incident-based reporting. The committee raised questions about Rapid DNA deployment, cold case coordination, and the slow pace of NIBRS/FIBRS adoption. No votes were taken, and the meeting adjourned after the presentations and questions.
NH

New Hampshire 2026 Regular Session

House Judiciary (02/20/2026)

Judiciary

Transcript Highlights:
  • </c><01:50:57.199><c> female</c> would be considered genetically female would be considered genetically
  • ,</c><02:09:22.320><c> or</c><02:09:22.560><c> any</c> genetically, hormonally, um, or any genetically
  • </c> suddenly going to need genetic testing. suddenly going to need genetic testing.
  • <c> hormonal</c> genetic, environmental, and hormonal genetic, environmental, and hormonal factors<02
  • </c><03:01:01.279><c> by</c> people with these disorders by people with these disorders by pretending
Committee: House Judiciary
Keywords: 1189, house, all
CA

California 2025-2026 Regular Session

Senate Health Committee Jan 14th, 2026

Health

Transcript Highlights:
  • leaders of the public behavioral health agencies that serve the mental health and substance use disorder
  • But the... “...the substance use disorder is a real thing and access to care matters, especially for
  • I learned of a pattern of family cancers, had genetic testing, learned I had dangerous mutations, and
  • prior to 23 and me and The way that search has happened prior to 23andMe and, you know, all the DNA genetic
  • able to talk to my doctor about my health history and my mom's health history, I was eligible for genetic
Committee: Senate Health
Summary: The committee first took up SB 490 by Senator Umberg, which would set deadlines for DHCS to investigate complaints about unlicensed sober living or recovery homes and require follow-up site visits; if the department cannot act within those timelines, counties and cities could request to assist with enforcement. Supporters, including a Garden Grove councilmember and the League of California Cities, said the bill would improve public safety and close enforcement gaps. County behavioral health representatives opposed the measure, arguing counties lack jurisdiction over private unlicensed residences, could face liability, and would absorb an unfunded workload increase. After extensive questioning about jurisdiction, local pressure, and whether the bill creates a mandate, the committee voted 8-0 to pass SB 490 to Appropriations and placed it on call. The committee then heard SB 381 by Senator Wahab, which would allow adult adoptees and descendants to obtain original birth certificates, create a contact preference form for birth parents, and stop omitting certain birth information from the amended certificate. The author and many adoptees and birth parents testified that access to original records is important for identity, dignity, and medical history, and that the bill would reduce the need for invasive searches through DNA and informal records. Several members raised concerns about privacy, the possibility of unwanted contact, and the mental health impacts on birth parents who expected confidentiality, while others emphasized the health benefits and the fact that most modern adoptions are open. The discussion focused heavily on proposed amendments to the contact form and whether the bill should require opt-in or opt-out contact preferences, but the transcript does not show a final vote on SB 381.
AZ
Transcript Highlights:
  • genetic counselors and designates the executive, ...and establishes the Board of Genetic Counselors
  • I am a local cancer genetic counselor and president of the Arizona Genetics Alliance.
  • I'm a local cancer genetic counselor and president of the Arizona Genetics Alliance.
  • Genetic counseling saved my life.
  • We had our own genetic counselor.
Summary: The committee heard House Bill 2433, which would require insurers offering Medicare supplement policies to also offer them to people under 65 who qualify for Medicare because of ALS or end-stage renal disease, with enrollment periods and premium protections. Supporters, including patient advocates and an ALS patient, said the bill would improve access to needed coverage and transplant-related care and could have only a small premium impact. Opponents, including Blue Cross Blue Shield/AHIP, argued it would shift significant costs onto older seniors and shrink the Medigap risk pool. The bill was ultimately given a do-pass recommendation on a 12-0 vote. House Bill 2593 would appropriate $1.5 million to the University of Arizona for the Arizona Perinatal Psychiatry Access Line. The sponsor and physicians testified that the line helps providers quickly treat pregnant and postpartum patients with depression, psychosis, OCD, and suicide risk, and also supports pediatric mental health care. Supporters said it improves outcomes and reduces emergency and referral costs. The committee approved the bill with a do-pass recommendation by a 10-1 vote, with one member present. The committee also passed House Concurrent Resolution 2013, proclaiming June 2026 as Celebrate Life Month, after emotional testimony from a woman born with spina bifida and another supporter. Several members objected that the state should focus on concrete supports such as health care and family leave, but the resolution still received a 7-5 do-pass recommendation. House Bill 4010, creating a licensing and regulatory board for genetic counselors, also advanced 11-1 after testimony from genetic counselors and a cancer survivor who said licensure would protect patients and improve access. House Bill 2196, addressing pharmacy benefit manager reimbursement and dispensing fees, passed 11-1 despite opposition from PBMs and employers who warned of higher costs; independent pharmacies argued the bill would help them cover costs and stay open. The committee then adopted a strike-everything amendment to House Bill 2182 requiring insurers and health plans to report claims denial and prior authorization data to DIFI, which would publish aggregated information and hold a later stakeholder review. Supporters said Arizona needs state-specific transparency data, while opponents called it redundant to federal CMS reporting; the amended bill passed 12-0. House Bill 2189, directing the Board of Nursing to update rules for licensed health aides and collect annual data, also passed unanimously after the board said it was already working on curriculum and implementation. The committee held House Bill 2813 and 2725, and began discussion of House Bill 2404, as the transcript ended.
MS

Mississippi 2026 Regular Session

Medicaid - Room 216, 4 February, 2026; 2:00 PM

Medicaid

Transcript Highlights:
  • PWS is a rare genetic disorder, and it affects about 1 in 30,000 live births.
  • disorder.
  • PWS is a genetic condition, and what it does is it affects the brain, the metabolism.
  • disorder and and that's it, rare genetic disorder and and that's it, right?
  • that causes recurring a brain disorder that causes recurring unprovoked<00:20:08.000><c> seizures.
Committee: Joint Medicaid
LA

Louisiana 2026 Regular Session

Judiciary Mar 19th, 2026

Judiciary

Transcript Highlights:
  • That's where we did genetic testing and found out that our sweet girl had a mutation of the SCN2A gene
  • The geneticist explained that this was a sodium channel disorder in the brain.
  • It's the leading single-gene cause of autism and childhood seizures, which are developmental disorders
  • We actually had met with a neurologist at Woman's Hospital, and she wanted to do the genetic testing
  • we got to Texas Children's, they did something called whole exome sequencing, and it's the entire genetic
Bills: HB9 , HB10 , HB16 , HB44 , HB46 , HB61 , HB101 , HB126 , HB153 , HB164 , HB233 , HB242 , HB436 , HB455 , HB571 , HB594
Committee: House Judiciary
MA

Massachusetts 2025-2026 Regular Session

Joint Committee on Health Care Financing Jun 21st, 2026 at 10:00 am

Joint Committee on Health Care Financing

Transcript Highlights:
  • He has a genetic disorder that causes profound autism and intellectual disability, and most...
  • He has a genetic disorder that causes profound autism and intellectual disability, and most recently,
  • another disorder that causes tumors to grow on the nerves, including the brain.
  • Bill 1351, Senate Bill 871, to ensure access to medical treatments essential for people with his disorders
  • disorder and is totally dependent for all his care.
Keywords: 995, all
Summary: The Joint Committee on Health Care Financing held a public hearing focused on two broad sets of issues: home- and community-based care, and school-based Medicaid reimbursement. In the morning session, legislators and advocates testified on bills affecting children and disabled enrollees, including proposals to clarify rate-setting for home health and home care services (H. 767/S. 870), allow family members and spouses to be paid caregivers under MassHealth (H. 1394/S. 886 and related bills), extend MassHealth coverage for applied behavior analysis and other therapies beyond age 21 for adults with autism and developmental disabilities (H. 1351/S. 871), and protect medically fragile children by improving access to continuous skilled nursing. In the later portion of the hearing, testimony shifted to a bill to improve MassHealth reimbursement for schools (S. 862), with speakers describing the school mental health crisis and the need to reinvest Medicaid funds directly into school health services. Witnesses on the home care rate-setting bill said current reimbursement methods are opaque and outdated, contributing to workforce shortages, unfilled shifts, long waitlists, and patients remaining in hospitals longer than necessary. Home care providers and trade groups argued the bill would not set rates directly but would require more transparent methodology and fuller consideration of real costs such as wages, benefits, taxes, training, and technology. On caregiver bills, many family members and provider organizations described the financial and emotional strain of caring for disabled or medically fragile relatives, especially when parents, spouses, or guardians are barred from being paid caregivers. They argued the bills would recognize existing unpaid care, help families remain at home, and reduce reliance on more expensive institutional care. Advocates for adult ABA coverage said services remain medically necessary after age 21 and that ending coverage at that age creates an inequitable “cliff” for MassHealth members compared with those with private insurance. For the PACE/community care bill, elder law attorneys and PACE advocates said current MassHealth income rules force some older adults with modestly higher incomes to spend down to $542 per month, making community living unrealistic and pushing people toward nursing homes. They supported changing the eligibility structure to a premium-based approach that would allow more people to remain in the community. On the school Medicaid bill, advocates said schools are providing effective, preventive mental health care, but reimbursement currently flows to municipalities rather than directly back to school health budgets, limiting districts’ ability to hire and retain staff. No votes were taken during the hearing; the committee heard testimony and several witnesses requested favorable reports on the bills.
MA

Massachusetts 2025-2026 Regular Session

Formal House Session 47 May 20th, 2026

Massachusetts House Floor Meeting

Transcript Highlights:
  • the bill facilitating better interaction between police officers and persons with autism spectrum disorder
  • An Act facilitating better interactions between police officers and persons with autism spectrum disorder
  • An Act facilitating better interactions between police officers and persons with autism spectrum disorder
  • It is the leading non-genetic cause of childhood hearing loss in this country.
  • And for lysosomal storage disorders, I look forward to a day when we will be in the same position to
Summary: The House took up several Senate and House bills, often suspending rules to advance them quickly. Early in the session, the chamber handled a Senate bill on student learning and mental health by insisting on its position and appointing a conference committee. It also referred a poverty-related petition away from Judiciary to the Committee on Children and Families after suspending Joint Rule 12. The House then considered a series of Ways and Means bills, including measures on police interactions with people with autism, honoring Blue Star families, Bolton land conveyances, newborn screening for congenital cytomegalovirus, affordable housing and cultural space in Brighton, increasing access to epinephrine, and civil rights and technology; most were amended, ordered to third reading, or passed to be engrossed. The most extensive debate centered on House 5441, requiring newborn screening for congenital CMV. Supporters described CMV as a common but often overlooked infection that can cause hearing loss, developmental delays, and other serious harms, arguing that universal screening would allow earlier treatment and better outcomes. An amendment to add several rare diseases was withdrawn, and a later amendment to create a broad parental opt-out was rejected by a roll call vote of 153-1. The bill then passed to be engrossed by a vote of 154-1. The House also passed House 5443 on expanded public access to epinephrine after emotional testimony about fatal anaphylaxis cases; that bill passed 149-0. Another major measure, House 5444 on civil rights and technology, would prohibit weaponized drones and robotic devices, restrict threatening or harassing use, and set rules for law enforcement use and warrant requirements. Members emphasized both public safety and civil liberties, and the bill passed to be engrossed by a vote of 154-1. The House also passed the Blue Star families bill, which creates commemorative license plates for immediate family members of law enforcement officers killed in the line of duty, with members speaking about fallen officers and the importance of honoring their families. Additional bills passed included the autism-related Blue Envelope bill, the Bolton land conveyance bill, and the Brighton affordable housing/cultural space bill. The session included multiple recesses, quorum checks, memorial tributes to Barney Frank and State Trooper Kevin Traynor, and concluded with the House adjourning to meet the next day in informal session.
MO

Missouri 2026 Regular Session

Emerging Issues Mar 2nd, 2026

Emerging Issues

Transcript Highlights:
  • bit about your understanding of genetic anomaly.
  • So there are definitely genetic anomaly intersex.
  • That is a disorder of sexual development occurring in males and females.
  • Or what am I supposed to do to prove my genetic anomaly?
  • Or all of the genetic anomalies that exist naturally in our species. Yes, exactly.
Keywords: 959, house, all