Video & Transcript Research : 'rare disease'
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WA
Washington 2025-2026 Regular Session
House Health Care & Wellness Feb 24th, 2026 at 01:30 pm
Health Care & Wellness
Keywords:
SB 5915, health technology assessment, HTA, clinical committee, medical technology review, coverage determination, state-purchased health care, Washington health care, RCW, evidence-based medicine, cost-effectiveness, safety and efficacy, Medicare coverage, national coverage determination, clinical guidelines, patient advocacy, public comment, medical necessity, rare disease, life-threatening disease
Summary:
The committee held public hearings on Substitute Senate Bill 6183, which would require health plans, including public and school employee plans, to cover FDA-approved HIV antiviral drugs without prior authorization, step therapy, or other utilization management when therapeutic equivalents exist. The prime sponsor said the bill is part of Washington’s effort to end HIV/AIDS and argued that delaying access to needed medication is especially harmful for late-stage diagnoses. No one testified in person or remotely, and public testimony was closed.
The committee then heard Substitute Senate Bill 6226, which would limit the Board of Hearing and Speech from adopting rules that prevent licensed audiologists, speech-language pathologists, and hearing aid specialists from using clinical judgment to choose telehealth or in-person care. Supporters said teleaudiology expands access, especially in rural areas and for patients with mobility barriers, while some testifiers raised patient safety concerns about first-time hearing aid fittings and asked for amendments or more time to review safeguards. One testifier said the Washington Hearing Society had moved to neutral after discussions on amendments.
In executive session, the committee adopted amendments and advanced several measures. Substitute Senate Bill 5185, on international medical school graduate physician licensing, passed with a technical amendment and a do pass recommendation. Substitute Senate Bill 5845, on timing of claims payments, was amended to include tribal health care systems, shorten carrier refund-request timelines, and delay implementation to January 1, 2028, then passed 17-1. Senate Bill 5915, prioritizing certain health technology assessments, and Senate Bill 6025, modifying the definition of fetal death, both passed unanimously. Senate Joint Memorial 8002, asking the federal government to change Medicare policy, passed 15-3. The committee then adjourned.
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.
Keywords:
SB 5915, health technology assessment, HTA, clinical committee, medical technology review, coverage determination, state-purchased health care, Washington health care, RCW, evidence-based medicine, cost-effectiveness, safety and efficacy, Medicare coverage, national coverage determination, clinical guidelines, patient advocacy, public comment, medical necessity, rare disease, life-threatening disease
Summary:
The House Health Care and Wellness Committee held public hearings on several Senate bills and one joint memorial. SB 5915 would update the Health Technology Assessment Program by adding Medicare-recommended or guideline-recommended technologies to the review priority list, requiring broader evidence review for rare or life-threatening diseases, and setting posting and decision deadlines; supporters from rare disease families and clinicians said the current process is outdated and too rigid, while the sponsor said the bill reflects needed modernization. SJM 8002 urges the federal government to oppose Medicare privatization and make changes to original Medicare and Medicare Advantage, including eliminating the 20% coinsurance in original Medicare, adding dental/vision/hearing benefits, reducing Medicare Advantage overpayments, and recouping fraud and abuse funds; labor, senior, and retiree advocates supported it as a way to protect beneficiaries and the Medicare trust fund.
The committee also heard SB 5395 on prior authorization, which would require more transparency in denial notices, limit denial decisions to licensed clinicians, restrict AI from being the sole basis for denials or delays, and address retrospective denials; providers, hospitals, and patient advocates supported the bill as a compromise to reduce delays and inappropriate denials, while insurers were generally neutral but sought a narrow amendment. SB 5845 would tighten payment timelines for clean claims, require faster notice and information requests for non-clean claims, and authorize penalties for chronic noncompliance; hospitals and physicians said predictable payment is essential for financial stability, while insurers were neutral and requested a limited amendment. SB 6025 would change the fetal death definition to use the best clinically accurate gestational age rather than the last menstrual period; OB-GYNs, nurses, and medical groups supported it as a medically accurate update, while one opponent objected on moral grounds.
The committee also heard SB 5988, which would authorize the Department of Health to continue accrediting opioid treatment programs and set fees to cover the program’s costs; the sponsor and DOH said it is needed to maintain a patient-centered accreditation option after budget cuts, and the bill was described as a companion to House legislation. Finally, SB 5917 would change how the Department of Corrections coordinates distribution of state-purchased abortion medications, remove the current cost-plus-fee requirement, and broaden the definition of abortion medication; supporters said it would allow the stockpiled medication to be distributed to providers and patients, while opponents argued it promotes abortion and misuses public funds. The transcript ends with the committee closing public testimony and adjourning, with no votes taken in the hearing.
MN
Minnesota 2025-2026 Regular Session
House Health Finance and Policy Committee 3/4/26
Health Finance and Policy
Keywords:
Medical Assistance, Medicaid, MNsure, MinnesotaCare, disability determination, expedited eligibility, state medical review team, compassionate allowance, rare disease, home and community-based services, long-term care, managed care, county-based purchasing, eligibility redetermination, periodic data matching, death master file, Social Security Administration, program integrity, income eligibility, asset test
LA
Transcript Highlights:
- Representative Hilfordi, provides with respect to the advisory board created to recommend new treatments for rare
Keywords:
rare cancers, advisory board, medical recommendations, oncologists, Louisiana cancer treatment, genetic testing, SCN2A, medical necessity, health insurance, rehabilitative services, neurological disorders
Summary:
The Senate Insurance Committee met on May 27, 2006, with five members present. The committee announced it had two bills on the agenda and began with House Bill 761, carried by Senator Wheat, which concerns the advisory board created to recommend new treatments for rare conditions. The opening remarks indicate the bill relates to the board’s role and recommendations, though the transcript cuts off before the full explanation or testimony.
No testimony, debate, or vote on HB 761 is included in the excerpt provided. The record ends shortly after the bill is introduced, so no further committee action is shown.
NM
New Mexico 2026 Regular Session
Senate - Health and Public Affairs Feb 6th, 2026 at 05:13 pm
Senate Health & Public Affairs
Transcript Highlights:
- amend that order to 'and,' but then we would be deviating from what the CDC says, the Centers for Disease
- It's very imperative that we get these chronic disease definitions in there, and I thank you and the
- I deal in chronic disease, or I used to deal in chronic disease, and the unnecessary work and time involved
Keywords:
prior authorization, pharmacy benefits manager, PBM, health insurer, prescription drugs, step therapy, formulary, auto-adjudication, electronic portal, appeals, medical necessity, serious mental illness, mental health, schizophrenia, bipolar disorder, major depression, substance use disorder, addiction treatment, cancer, autoimmune disorder
LA
Transcript Highlights:
- It provides for, with respect to the advisory board created to recommend new treatments for rare can.
NM
New Mexico 2026 Regular Session
House - Health and Human Services Feb 16th, 2026 at 09:04 am
House Health & Human Services
Transcript Highlights:
- For health plans and individuals, I would hope that people, especially with chronic diseases, get to
Keywords:
SB 101, Health Care Delivery and Access Act, repeal of repeal, sunset repeal, delayed repeal, health care, healthcare, access to care, medical services, provider regulation, state health law, New Mexico, SB 21, Medicare supplement, Medigap, open enrollment, guaranteed issue, birthday month enrollment, health insurance, insurance regulation
NM
New Mexico 2026 Regular Session
Senate - Health and Public Affairs Feb 4th, 2026 at 06:25 pm
Senate Health & Public Affairs
Transcript Highlights:
- diseases.
- People with rare diseases are defined by CMS and SAMHSA and other federal entities as one person in 200,000
- So rare diseases can be blood disorders; they could be.
- So one in 200,000 we actually have some people in the State Senate with rare diseases because after we
- For example, Senator Tobiasen even before the West Nile disease told me that her husband had a rare disease
Keywords:
prior authorization, pharmacy benefits manager, PBM, health insurer, prescription drugs, step therapy, formulary, auto-adjudication, electronic portal, appeals, medical necessity, serious mental illness, mental health, schizophrenia, bipolar disorder, major depression, substance use disorder, addiction treatment, cancer, autoimmune disorder
MN
Minnesota 2025-2026 Regular Session
House Health Finance and Policy Committee 3/23/26
Health Finance and Policy
Transcript Highlights:
- </c> treatments for rare diseases. treatments for rare diseases.
- </c> offering gene therapy for a fatal rare offering gene therapy for a fatal rare disease<00:43:33.040
- But the 340B question I have not seen yet relating to these rare disease products.
- c> their</c> with rare genetic disease in their with rare genetic disease in their family<01:04:17.680
- rare diseases often cannot country those rare diseases often cannot receive<01:10:36.080><c> a</c><01
Keywords:
healthcare, WIC, community health, licensing, speech-language pathology, audiology, contract term limits, healthcare services, provider enrollment, disenrollment, premium payments, medical assistance, substance use disorders, mental health, children's mental health, early childhood, early intervention, consultation grants, Head Start, child care
MN
Minnesota 2025-2026 Regular Session
Agriculture Committee Meeting - 2026-04-08
Agriculture Finance and Policy
Transcript Highlights:
- committed to working with the board to control the spread of CWD with thoughtful policy that balances disease
- At this time, there is no validated live test for CWD, or chronic wasting disease, that would allow us
- At this time, there is no validated live test for CWD, or chronic wasting disease, that would allow us
- There was a farm there that imported elk from Alberta that later tested positive for the disease.
- There was a farm there that imported elk from Alberta that later tested positive for the disease.
Keywords:
energy, renewable energy, ammonia, hydrogen, certificate tracking, funding, environment, elk, cervidae, cervid importation, chronic wasting disease, CWD, animal health, livestock, wildlife disease, Minnesota Department of Natural Resources, state veterinarian, zoo, Association of Zoos and Aquariums, AZA
AL
Alabama 2025 Regular Session
Alabama House Agriculture and Forestry Committee Apr 9th, 2025
Agriculture and Forestry
Transcript Highlights:
- It is the cheap version of wasting disease—basically the same disease.
- we spread the disease and all sorts of things.
- Deer breeders will be the cure for the disease.
- or other diseases.
- animals like... or disease with other animals like cows.
Bills:
HB509
Keywords:
HB509, game breeder, game breeder license, cervid, deer breeder, whitetail deer, elk, fallow deer, deer farm, captive deer, cervidae, wildlife disease, disease testing, antemortem testing, state veterinarian, Department of Conservation and Natural Resources, property rights, private property, animal transfer, breeding stock
TX
Texas 89th Regular
Senate Committee on Health and Human Services Mar 18th, 2025
Health & Human Services
Transcript Highlights:
- And now, today, what you have before you is a bill that allows for... rare or ultra-rare diseases where
- Often, there are no clinical trials with rare or ultra-rare diseases because there are simply not enough
- Senate Bill 984 establishes a pathway by which patients with rare and ultra-rare diseases can...
- And really what we have here is ultra-rare diseases. rare diseases that simply don't have a solution.
- I mean, the list of these diseases is so rare that I hadn't even heard half of these: Barr syndrome,
Keywords:
immunization, written informed consent, civil liability, health care provider, vaccine compensation, administrative penalty, health care, licensing, complaint procedure, disciplinary action, law enforcement, pharmacy benefit manager, PBM, gag clause, prescription drug pricing, out-of-pocket cost, cash price, pharmacist, pharmacy, prescription drug benefit
MN
Minnesota 2025-2026 Regular Session
House Agriculture Finance and Policy Committee 3/18/26
Agriculture Finance and Policy
Transcript Highlights:
- </c> The Centers for Disease Control also does not advocate for declawing cats, even if they live with
- , there's a specific allowance for this to be done to address an existing or recurring infection, disease
- , injury or abnormal condition in disease, injury or abnormal condition in the<01:18:27.040><c> claws
- Neither does the Infectious Disease Society of America.
- There are more fish diseases now.
Keywords:
agriculture, livestock, retailers, ownership interest, exclusive contracts, meat packing companies, dominant retailers, state law, Department of Agriculture, appropriation, funding, agriculture policy, state budget, animal welfare, cat declawing, animal cruelty, therapeutic procedures, civil penalties, Minnesota Department of Agriculture, aquatic life
TX
Transcript Highlights:
- After season two of The Chosen, we gained a rare confidence that we knew we were going to shoot for seven
TX
Transcript Highlights:
- Safeguards to prevent the possible spread of chronic wasting disease.
- With the advent of Chronic Wasting Disease, or CWD, all deer from breeder facilities are required to
- Chronic wasting disease is a disease among white-tailed deer that we do not know a whole lot about.
- And Canada are following standard disease protocols in dealing with chronic wasting disease (CWD).
- In these areas, many have chronic wasting disease (CWD).
MN
Minnesota 2025-2026 Regular Session
House Agriculture Finance and Policy Committee 3/25/26
Agriculture Finance and Policy
Transcript Highlights:
- Co-Chair Anderson and I had an agreement that one of the bills scheduled that day, which was that fish disease
- Co-Chair Anderson and I had an agreement that one of the bills scheduled that day, which was that fish disease
Keywords:
pesticides, wild rice, environmental protection, agriculture, water quality, pollinators, training, management plan, fertilizer research, education grants, Minnesota Agricultural Council, technology transfer, agricultural productivity, HF4372, Minnesota agriculture, meat processing, meat processing training, retention incentive grants, grant extension, project deadline extension
OK
Oklahoma 2026 Regular Session
House of Representatives Second Regular Session of the 60th Legislature Day 47 - 2 Apr 27th, 2026 at 04:00 pm
Oklahoma House Floor Meeting
Transcript Highlights:
- Asthma is the most common uncommunicated disease among children, leading cause of hospitalization and
Keywords:
light pollution, bird mortality, migration, energy conservation, wildlife protection, University Hospitals Authority, funding, behavioral health, appropriation, adolescent health, emergency legislation, Oklahoma State University, Medical Authority, human performance, pharmaceutical expansion, emergency funding, juvenile justice, youth services, pandemic relief, healthcare
OK
Oklahoma 2026 Regular Session
House of Representatives Second Regular Session of the 60th Legislature Day 47 - 1 Apr 27th, 2026 at 01:30 pm
Oklahoma House Floor Meeting
Transcript Highlights:
- Resurfacing on Friday sometimes and rarely ever fully engaged with our other clients or the management
- The public rarely sees what you do, but none of this happens without you.
Keywords:
light pollution, bird mortality, migration, energy conservation, wildlife protection, University Hospitals Authority, funding, behavioral health, appropriation, adolescent health, emergency legislation, Oklahoma State University, Medical Authority, human performance, pharmaceutical expansion, emergency funding, juvenile justice, youth services, pandemic relief, healthcare
OK
Oklahoma 2026 Regular Session
House of Representatives Second Regular Session of the 60th Legislature Day 47 - 2 Apr 27th, 2026
Oklahoma House Floor Meeting
Transcript Highlights:
- Asthma is the most common noncommunicable disease among children, leading cause of hospitalization and
Keywords:
light pollution, bird mortality, migration, energy conservation, wildlife protection, University Hospitals Authority, funding, behavioral health, appropriation, adolescent health, emergency legislation, Oklahoma State University, Medical Authority, human performance, pharmaceutical expansion, emergency funding, juvenile justice, youth services, pandemic relief, healthcare
Summary:
The House reconvened after a quorum call and took up several Senate bills with joint committee reports, mostly involving health and human services funding. SB 1130, relating to University Hospitals authority, passed 74-12 and its emergency clause also passed. SB 1134, funding the Oklahoma State University Medical Authority, passed 75-14 with the emergency clause approved. SB 1131, appropriating ARP interest funds to address a Rogers County gap for the Office of Juvenile Affairs, passed 81-10 and the emergency clause passed. SB 1132, reappropriating ARPA funds for rural hospital rebuild programs under the State Department of Health to avoid federal clawback, passed 82-10 with emergency approval. SB 1133, involving the Department of Mental Health and Substance Abuse Services and repurposing interest funds for a Norman building project, passed 68-24 and its emergency clause also passed. SB 1142, appropriating ARPA funds to the Department of Human Services consistent with pandemic relief recommendations, passed 68-21 and the emergency clause was adopted.
The House also considered H.R. 1049, a resolution designating May as Asthma and Allergy Awareness Month. Representative Newton summarized asthma’s impact in Oklahoma and nationally, including child health effects and recent deaths in the state, and moved adoption by unanimous consent. The transcript ends with announcements and adjournment until the next scheduled meeting.
OK
Oklahoma 2026 Regular Session
House of Representatives Second Regular Session of the 60th Legislature Day 47 - 1 Apr 27th, 2026
Oklahoma House Floor Meeting
Transcript Highlights:
- It's a muscle and joint disease that affects the use of his arms and legs.
- And then I disappear for four months, resurfacing on Friday sometimes and rarely ever fully engaged with
- The public rarely sees what you do, but none of this happens without you.
Keywords:
light pollution, bird mortality, migration, energy conservation, wildlife protection, University Hospitals Authority, funding, behavioral health, appropriation, adolescent health, emergency legislation, Oklahoma State University, Medical Authority, human performance, pharmaceutical expansion, emergency funding, juvenile justice, youth services, pandemic relief, healthcare
Summary:
The House convened, called the roll, and opened with prayer, the Pledge of Allegiance, and a series of recognitions and presentations. Members honored Vice Admiral Jeff Trusler as Veteran of the Week, recognized the Prague Kolache Festival royalty and candidates, unveiled an artwork for the Capitol’s Hall of Heroes, and introduced the Doctor, Psychologist, and Nurse of the Day, along with the OSBI cold case team. The House also adopted HCR 1026, a resolution tied to Earth Day and “Lights Out Day” in Oklahoma, aimed at reducing light pollution and protecting migrating birds.
A major portion of the meeting consisted of farewell remarks from Representatives Mike Osborne and Kevin West. Both reflected on their years of service, thanked family, staff, colleagues, and constituents, and emphasized themes of public service, hard work, conviction, and working across differences. Osborne’s remarks focused on freedom, immigration, service, and doing good in public life, while West stressed standing on principle, listening to others, and choosing courage over convenience.
After the presentations and personal privilege speeches, the House moved into consideration of legislation. Chairman Caldwell presented the joint committee report on Senate Bill 1130, relating to the University Hospitals Authority, saying it would help ensure Oklahoma and the University of Oklahoma have one of the world’s leading pediatric cardiology units. The transcript ends as members begin considering the bill, with no final vote shown in the excerpt.