Transcript Highlights:

• Billy Rubin Lights, as I know them, the non-technical term, are treatment for newborns with jaundice.
• Newborn jaundice affects 60 to 80% of all infants, and 2 to 6% require treatment.
• This causes many newborns and their families to have to be admitted into the hospital to receive the
• In partnership with the Children's Health Network, we care for more than 7,000 newborns each year.
• But for some newborns, treatment is required to avoid serious complications.

Bills: HF2779, HF1645, HF1885, HF1289, HF1534, HF2707, HF1675, HF3046

Keywords: health care transparency, ownership disclosure, control reporting, health care consolidation, private equity, management services organization, MSO, provider organization, health insurer, pharmacy benefit manager, hospital system, affiliate reporting, financial disclosure, public reporting, market concentration, horizontal consolidation, vertical consolidation, health care ownership, corporate practice, health care regulation

Transcript Highlights:

• this amendment for me, it clarifies that the qualified service member must have been honorably discharged
• , whereas the original said not dishonorably discharged.
• To the application of the offense of deadly conduct for certain peace officers discharging official duties
• SB 1044 by Parker relating to newborn screening tests for Shane.
• SB1898 by Johnson relating to the discharge and use of certain firefighter phones for testing or training

Bills: HJR98, HJR8, HJR133, HB23, HB33, HB144, HB 109, HB 103, HB148, HB3809, HB1686, HB2217, HB2156, HB220, HB2421, HB2363, HB3773, HB421, HB2584, HB2615, HB2455, HB3711, HB2559, HB3747, HB2775, HB2886, HB3126, HB3666, HB3595, HB3260, HB3506, HB1638, HB3376, HB3826, HB3628, HB1349, HB3770, HB1831, HB1762, HB2614, HB3113, HB267, HB322, HB431, HB869, HB 1203, HB 1201, HB 1244, HB1875, HB1950, HB2152, HB2290, HB2341, HB2436, HB2809, HB2856, HB3012, HB2954, HCR56, HCR102, HB 107, HB1587, HB3684, HB658, HJR99, HB1399, HJR5, HJR2, HJR6, HJR31, HB1971, SJR3, HB1775, HJR72, HB502, HB3109, HJR98, HJR8, HJR133, HB 118, HB388, HB 114, HB205, HB2789, HB2791, HB499, HB2960, HB3163, HB3135, HB2427, HB1618, HB1672, HB1722, HB1338, HB787, HB2618, HB879, HB 1126, HB4134, HB3513, HB718, HB1536, HB1445, HB1640, HB1893, HB1734, HB3229, HB3306, HB 1276, HB3272, HB3276, HB3516, HB4145, HB1585, HB4810, HB2989, HB2558, HB3014, HB2742, HB1695, HB23, HB33, HB144, HB 109, HB 103, HB148, HB3809, HB1686, HB2217, HB2156, HB220, HB2421, HB2363, HB3773, HB421, HB2584, HB2615, HB2455, HB3711, HB2559, HB3747, HB2775, HB2886, HB3126, HB3666, HB3595, HB3260, HB3506, HB1638, HB3376, HB3826, HB3628, HB1349, HB3770, HB1831, HB1762, HB2614, HB3113, HB267, HB322, HB431, HB869, HB 1203, HB 1201, HB 1244, HB1875, HB1950, HB2152, HB2290, HB2341, HB2436, HB2809, HB2856, HB3012, HB2954, HCR56, HCR102

Keywords: Article V, federal government, fiscal restraints, constitutional amendment, term limits, nuclear energy, electric generation, funding, Texas nuclear development fund, advanced reactors, HJR 133, Texas constitutional amendment, ad valorem tax, property tax exemption, homestead exemption, surviving spouse, veteran, veterans benefits, service-connected death, presumed service-connected condition

Transcript Highlights:

• long-term treatment and housing help support people avoid hospitalization and maintain stability after discharge
• 7 a.m. the next day, we were told that a bed had opened at Austin Oaks, My son was admitted and discharged
• and they're clearly not interested in the outcomes if they go to jail right after they've been discharged
• He was discharged, and in less than three weeks, he ended up in jail.
• This is especially true for high-risk patients, such as newborns in the neonatal ICU or immunocompromised

Bills: SB500, SB719, SB912, SB1232, SB1467, SB1777, SB1864, SB2023, SB2119, SB2458

Keywords: SB 500, Texas adoption law, Family Code, DFPS, Department of Family and Protective Services, child-placing agency, prospective adoptive parents, adoption records, confidential information, nondisclosure agreement, child history report, health history, social history, educational history, genetic history, termination of parental rights, permanency plan, single source continuum contractor, privacy, redaction

Summary: The committee first took up several pending bills and reported them favorably: SB 968, SB 636 as substituted, SB 1137, and SB 1138 as substituted. Each was advanced by roll call vote, and the committee also recommended the approved bills for the local and uncontested calendar. The chair then moved to the posted agenda and heard SB 719, a mental health bed-capacity study bill by Senator Eckhart, with a committee substitute that refined the data collection to distinguish state and non-state beds, child and adult beds, include two point-in-time counts, and capture jail diversion data. Testimony on SB 719 was largely supportive from Integral Care, NAMI Texas, and the Children’s Hospital Association of Texas, all of whom said Texas needs better data on inpatient psychiatric capacity, workforce needs, and future demand. Several witnesses described long waits for beds, especially for forensic restoration, and argued the study would help target future investments. Senator Perry and others noted the state has already made major investments in new beds and urged the bill to account for beds already coming online; the committee ultimately withdrew the substitute and left SB 719 pending after public testimony closed. The committee then heard SB 1864, which would allow small egg producers to sell ungraded eggs more broadly, including to restaurants and retailers, with the substitute increasing the weekly sales threshold and addressing sanitation and labeling. Supporters said grading is about size, not safety, and that the bill would help small farms reach new markets; opponents from the Texas Poultry Federation argued grading and candling help identify cracks and defects that can affect safety and quality. The committee adopted the substitute and left the bill pending. It also heard SB 1467, requiring DSHS to share death record information with hospitals for record accuracy and quality review, and SB 912, which would modernize continuing education tracking for health licensing agencies; both bills drew supportive testimony and were left pending. Finally, the committee heard SB 2023, which would create an HHSC grant program to help counties pay for indigent burial costs, with county representatives testifying in support.

Transcript Highlights:

• screening test which is done newborn screening test which is done right<00:53:53.799><c> when</c><00
• He said newborn screening, which Representative Hemx and Jger talked about a little bit, is already in
• ... parents can opt out of the newborn screening, but otherwise, if they don't opt out, the screening
• So my question to you is, does this language that you've got here override the newborn screening?
• Does it supersede what we have now for newborn screening, which, as I said, is a very well-worked-out

Keywords: 1183, house

Transcript Highlights:

• I know I've had several newborns who have taken to church.
• And so I can choose to protect those newborns and keep them, you know, by me and not let anyone touch
• I know I've had several newborns who have taken to church.
• And so I can choose to protect those newborns and keep them, you know, by me and not let anyone touch
• and smell. ...I can choose to protect those newborns and keep them, you know, by me and not let anyone

Summary: The committee first heard House Bill 3037, which would allow certain Missouri Empowerment Scholarship Account tax credits, beginning in 2028, to be carried back to the immediately prior tax year. Representative Allen said the bill was a technical timing change that would not alter the credit amount, cap, refundability, transferability, or other safeguards. Supporters, including the American Federation for Children and a representative of the scholarship organization, said the change would help donors better match contributions to their actual tax liability and could increase participation. One member raised concern about the fiscal impact on education funding, noting the Department of Revenue’s estimate of reduced revenue, while the sponsor said the delayed start date was intended to give the state time to plan. The committee then heard House Bill 2830, which would increase the recorder fee that funds the Missouri Housing Trust Fund from $3 to $9 per real estate document. Representative Collins said the increase would strengthen funding for affordable housing, rental assistance, and homeless prevention. Supporters from Empower Missouri, Love Columbia, Peter and Paul Community Services, and Missouri’s Coalition of Recovery Support Providers testified that the fund is under-resourced, with many requests going unmet and some housing programs unable to support new construction or rehabilitation projects. They described local housing shortages, homelessness, and the need for more capital funding, arguing the fee increase would help meet demand without using general revenue. No opposition testimony was presented. Finally, the committee took up House Bills 1778 and 2760, both aimed at protecting religious exercise during emergencies. The sponsors said the bills were prompted by COVID-era restrictions on churches and would prevent government orders from limiting worship services, while still allowing compliance with building and fire codes and excluding violence or harm. Members debated whether the bills would create a special exemption for houses of worship and whether they could interfere with public health responses to future outbreaks. A Baptist minister testified in opposition, arguing that religious gatherings should not receive special treatment and that restrictions should apply consistently to all mass gatherings. The hearing ended without a vote, and the committee adjourned after public testimony.

Transcript Highlights:

• And I see babies being bounced on that side, newborns, toddlers. Bring them to this space.
• being bounced on that And I see babies being bounced on that side side side of<00:13:12.960><c> newborns
• ,</c> of newborns, of newborns, of<00:13:15.080><c> toddlers.

Keywords: 1183, house

Transcript Highlights:

• holds special importance for me personally, especially this year as I look forward to welcoming my newborn
• Blocker, who was in the United States Navy and he was discharged as a Specialist E-4 rank."
• BLOCKERWHO WAS IN THE UNITED STATES NAVY AND HE WAS DISCHARGED AS A SPECIALIST E-4 RANK.
• Secretary will read. >> Senator Krueger moves to discharge from the Committee on Finance Assembly Bill

Keywords: 993, senate, all

Summary: The Senate convened, approved the prior journal, and then moved through a series of budget-related and ceremonial items. The chamber accepted Rules and Finance Committee reports and took up several budget extender and budget implementation bills, including the main appropriations extender and later a transportation, economic development, and environmental conservation budget bill. Senators questioned the sponsor extensively about the status of the remaining budget bills, the use of messages of necessity, and the absence of joint budget conference committees. The extender bill passed 59-2, and later budget-related measures were advanced after reconsideration and amendment. A major portion of the session focused on the environmental and energy provisions in the budget bill, especially changes to the Climate Leadership and Community Protection Act. Senators debated extending emissions targets, the role of cap-and-invest, utility affordability, ratepayer impacts, and the structure of a proposed blue-ribbon commission. Supporters said the changes were needed to give the state more time to implement the law and to protect affordability, while opponents argued the bill was a political delay that would not lower energy costs and relied too heavily on subsidies and future planning. The bill also drew questions about electric vehicle rebates, thermostat control programs, emergency diesel generation for Micron, and how imported electricity and out-of-state emissions would be treated. The Senate also adopted several previously adopted resolutions honoring the 50th anniversary of the National Black Caucus of State Legislators, India Independence Day, the New York State Veterans Hall of Fame, and the 50th anniversary of Interfaith Works of Central New York. Senators spoke in support of each resolution, highlighting the contributions of Black legislators, Indian-American communities, veterans, and refugee and interfaith service organizations. The Veterans Hall of Fame ceremony was specifically noted as a chamber event, and guests were recognized from the floor and gallery. In addition, the Senate restored recalled bills to the third reading calendar through reconsideration votes and amendments, including a highway law bill and another recalled bill, and then stood at ease for scheduled conferences and a Veterans Hall of Fame ceremony before resuming session. The transcript ended with discussion of a separate bill affecting automobile insurance serious-injury standards, with questions about what claims would remain available and whether the change would improve affordability.

Transcript Highlights:

• I got a ticket with my newborn in an HOV lane, and I had to go to court and fight it.
• Johnson relating to the provision of certain information about Medicaid benefits in relation to newborns
• Oliverson, and Linda Garcia also joined on this really important bill to make sure that newborn babies
• And they have to prove that they were honorably discharged.
• It would not actually expire until... 30 days after discharge from the military.

Bills: HJR175, HJR88, HB21, HB49, HB216, HB346, HB573, HB565, HB954, HB1953, HB2686, HB1441, HB2734, HB1650, HB3161, HB2876, HB3185, HB3388, HB2761, HB3233, HB 1186, HB1534, HB5506, HB5129, HB3619, HB778, HB2867, HB3221, HB3672, HB2434, HB4903, HB3687, HB3675, HB4609, HB4582, HB4921, HB3866, HB3901, HB4534, HB2446, HB3984, HB700, HB4012, HB4491, HB4088, HB229, HB4234, HB722, HB4136, HB4105, HB4413, HB170, HB551, HB2858, HB3053, HB3142, HB3180, HB3722, HB2200, HB1794, HB1784, HB1581, HB2530, HB4308, HB1896, HB2974, HB3359, HB4580, HB2458, HB2215, HB3332, HB2278, HB3015, HB3151, HB1368, HCR9, HCR40, HB5138, SB17, HB4944, HB2284, HB3421, SB1569, SB2420, SB1968, SB2351, SB2544, SB1490, SB1349, SB1568, SB2776, HB3531, HB2149, HB4327, HB3158, HB3717, HB4520, SB888, SB552, HB3138, HB3704, HB2921, HB4853, HB4506, HB3892, HJR161, HJR175, HJR88, HB1937, HB3334, HB5444, HB5137, HB361, HB321, HB5447, HB464, HB678, HB2294, HB4172, HB3225, HB1769, HB5394, HB1837, HB1787, HB2271, HB2440, HB5134, HB5149, HB2151, HB2073, HB2186, HB2025, HB1936, HB1777, HB1663, HB 1306, HB 1290, HB1527, HB4802, HB3462, HB2963, HB2462, HB2560, HB644, HB2725, HB2621, HB2588, HB1443, HB1403, HB3032, HB1557, HB1664, HB2811, HB2088, HB2598, HB3062, HB3134, HB3940, HB4027, HB4097, HB4862, HB4170, HB4157, HB4205, HB4279, HB4377, HB4838, HB5424, HB5294, HB4870, HB4763, HB5639, HB4112, HB2275, HB1677, HB5014, HB3848, HB3797, HB3727, HB3709, HB3177, HB3057, HB4176, HB4202, HB2180, HB3528, HB3658, HB21, HB49, HB216, HB346, HB573, HB565, HB954, HB1953, HB2686, HB1441, HB2734, HB1650, HB3161, HB2876, HB3185, HB3388, HB2761, HB3233, HB 1186, HB1534, HB5506, HB5129, HB3619, HB778, HB2867, HB3221, HB3672, HB2434, HB4903, HB3687, HB3675, HB4609, HB4582, HB4921, HB3866, HB3901, HB4534, HB2446, HB3984, HB700, HB4012, HB4491, HB4088, HB229, HB4234, HB722, HB4136, HB4105, HB4413, HB170, HB551, HB2858, HB3053, HB3142, HB3180, HB3722, HB2200, HB1794, HB1784, HB1581, HB2530, HB4308, HB1896, HB2974, HB3359, HB4580, HB2458, HB2215, HB3332, HB2278, HB3015, HB3151, HB1368, HCR76, HCR127, HCR9, HCR40

Keywords: constitutional amendment, medium of exchange, currency rights, digital currency, financial autonomy, tax exemption, rainwater harvesting, graywater system, local government, ad valorem taxation, housing finance, multifamily residential, low income, audit requirements, affordable housing, development bonds, oil waste, gas waste, liability, treatment processes

Transcript Highlights:

• Over the years, he has managed to get her discharged from multiple respected institutions: Franciscan
• state-contracted, comprehensive foster care model serving special-needs children, teens, and young adults, ages newborn

Keywords: 995, all

Summary: The Joint Committee on the Judiciary held a hearing on a wide range of state, probate, and family bills, with chairs Edwards and Day outlining strict testimony limits and accepting written testimony. Early testimony focused on H. 1911/S. 1138, which would clarify that a durable power of attorney may create a trust if that authority is expressly granted; sponsors and elder law advocates said the bill would resolve uncertainty created by the Barbetti decision and align Massachusetts with other states. A major portion of the hearing centered on S. 1102, a proposal to establish medical panels in Probate and Family Court. Supporters, including attorneys, parents, physicians, and advocates, said neutral three-doctor panels would help judges resolve disputed medical issues in guardianship and custody cases involving children, elders, and people with disabilities. Testifiers described cases where medical treatment was blocked or contested by one parent or guardian, arguing the panels would provide impartial expertise and protect vulnerable people. The committee also heard support for bills addressing disability discrimination in family court, military parents’ custody rights, and a shared parenting bill, H. 1710, which drew strong opposition from domestic violence advocates and others who said a 50-50 presumption could harm survivors and children. The committee also took testimony on several probate and court-administration measures. Senator Lovely supported a bill on nominee trust partition, and Senator Comerford and probate officials backed legislation to codify additional registry staff positions and modernize registry operations. Other bills discussed included foster care liability insurance, with providers warning that rising premiums and loss of coverage could force program closures; health care proxy storage and activation; access to decedents’ email accounts; uniform trust decanting; the Uniform Voidable Transactions Act; heirs’ property partition protections; a constitutional right to health care; alimony-related reforms; child-centered family law; and a right of disposition for funeral arrangements. No votes were taken during the hearing, and the committee repeatedly invited written testimony and follow-up questions.

Transcript Highlights:

• address how many bills and how you're approaching this issue from all angles, from actually educating newborn
• batteries, should not be stored or parked within 50 feet of a structure until the battery can be safely discharged

Keywords: 999, senate, all

Summary: The committee heard and approved several bills on water quality, public safety, utilities, and transparency. CS/SB 848 on stormwater treatment and water quality enhancement areas was presented as a follow-up to prior water quality legislation and was reported favorably with no opposition. SB 28, a claim bill for Reginald Jackson against the City of Lakeland, was also reported favorably. CS/CS/SB 658, a bipartisan child drowning prevention bill for rental properties, drew extensive testimony from child advocacy, drowning prevention, and autism advocates who described Florida’s high child drowning rates and supported requiring at least one pool or water-safety feature at short- and long-term rentals; the committee adopted two amendments, including one requiring license applicants to certify compliance, and the bill was reported favorably. The committee also approved CS/SB 1724 on municipal utility services, which addresses outside-city utility service agreements, revenue use, rate limits, and customer meetings; an amendment added gas utilities back into the bill. CS/SB 934 on Florida Keys areas of critical state concern was amended to remove a section viewed as conflicting with the Live Local Act and then reported favorably. SB 1622, creating a one-time waiver for certain late-filed financial disclosure fines, was supported by speakers and reported favorably. CS/CS/SB 260 on electric vehicle storage at towing facilities was amended to focus on storage only and to limit the extra fee period until inspection clears fire risk; the bill drew mixed testimony from insurers, towing-related interests, and fire officials, but was reported favorably. Later, SB 1264 on private schools was presented as easing zoning and occupancy barriers for small schools and microschools, with supporters saying it would help meet demand for school choice; members raised concerns about local implementation, but the bill was reported favorably. CS/CS/SB 1014 on municipal utility service to properties outside city limits was amended to apply only to residential properties and to clarify capacity and annexation-related exceptions; it was supported by local-government and environmental testimony and reported favorably. CS/SB 1102, expanding the local government infrastructure surtax to include body camera costs, was amended so any use would require a new referendum and was reported favorably. Finally, SB 1566 on local government spending and transparency required online posting of budgets and related information, drew testimony from counties, cities, and transparency advocates about costs and uniform templates, and was reported favorably after amendment, with several senators noting concerns for smaller local governments while supporting the transparency goal.

Transcript Highlights:

• Line 789 is repealing the sunset for the Newborn Hearing Screening Advisory Committee.
• </c> repealing the sunset for the newborn repealing the sunset for the newborn hearing<00:20:08.840><
• Then on line 990 is, I believe, both a House and Senate position relating to newborn screening and the
• newborn screening fee. group.
• </c><00:25:28.799><c> screening</c> position relating to newborn screening position relating to newborn

Keywords: 1187, senate, all

Transcript Highlights:

• The state public health lab can detect an emerging threat in a newborn who is only hours old.
• Page 184 is the Genetics and Newborn Health Services core.
• to appropriate services when identified with a rare disorder from a newborn screening blood spot or
• So the lion's share of our other funds is split between safe drinking water funding, our newborn screening
• And then the other thing I would point to in the other funds is our newborn screening fund.

Keywords: 959, house, all

Transcript Highlights:

• Initial testing will prevent non-fatal overdoses from being discharged from the hospital without any
• so grateful to Senator McLean for filing and sponsoring this excellent addition to our surrendered newborn
• so grateful to Senator McLean for filing and sponsoring this excellent addition to our surrendered newborn
• And certainly there are a lot of other ways to hand off a newborn infant to some young girl who is desperate

Summary: The Judiciary Committee heard Senate Bill 1272 on guardianship, which would limit a guardian’s ability to isolate an adult ward from family and require notice of major events such as a ward’s death or relocation to a more restrictive setting. Senator Jones and supportive speakers said the bill was intended to protect wards from abuse and isolation by bad actors, while still preserving good-faith guardianship. With no opposition testimony or debate, the committee voted 8-0 to report the bill favorably. The committee then considered CS for Senate Bill 1284, which would expand Florida’s Wrongful Death Act to allow civil claims for the death of an unborn child. An amendment was adopted to define “unborn child” as a member of the species Homo sapiens carried in the womb and to state that the act does not authorize claims against the mother or against health care providers acting within the lawful standard of care. The bill drew extensive debate and testimony. Supporters argued it would give parents parity and fuller damages, including economic losses and mental anguish, when negligence causes the death of an unborn child. Opponents, including the ACLU, medical professionals, and reproductive rights advocates, warned it could be used to target abortion care, increase malpractice exposure, worsen physician shortages, and create speculative damages. The committee approved the bill 6-4. Finally, the committee took up Senate Bill 1288 on parental rights, with a strike-all amendment that would strengthen parental control over minors’ medical decisions, surveys, and biofeedback devices, while adding exceptions for emergencies, court orders, certain legal statuses, and situations involving abuse or out-of-home placement. Supporters said the measure restores parents as primary decision-makers and protects children from inappropriate questioning or treatment without consent. Opponents argued it could block minors from confidential care for STIs, mental health, or abuse-related issues, and could chill school and medical screenings. The transcript ends during testimony and debate on this bill, before any final vote is shown.

Transcript Highlights:

• , myself included, specifically because they prioritize infection control and limit exposure for newborns
• Madam Chair, Member, Senate Bill 1561 requires assisted living facility discharge or eviction notices
• , in our vulnerable study committee, one of the conversations that came up was when people were discharged

Bills: SB1014, SB1094, SB1146, SB1177, SB1192, SB1194, SB1214, SB1372, SB1390, SB1398, SB1399, SB1494, SB1557, SB1561, SB1564, SB1602, SB1603, SB1621, SB1628, SB1629, SB1713, SB1752, SB1776, SB1813, SB1814, SB1821

Keywords: gender transition, gender detransition, health insurance, medical procedures, insurance claims, official documents, Arizona law, gender reassignment, civil liability, minors, medical consent, detransition, dependent children, foster care, periodic review, court hearings, child welfare, public funds, prohibition, Arizona legislation

Transcript Highlights:

• But he has a newborn baby, and while I'm no Wes Hambrick, I'm going to do my best to fill in for him.
• And once they have discharged their sentence, it will release them back into the community.
• arrested and are awaiting release. trial on a local charge or they could be individuals that they have discharged

Keywords: 1184, house, all

Transcript Highlights:

• Initial testing will prevent non-fatal overdoses from being discharged from the hospital without any
• Newborn stache surrendered infants statute.
• And certainly there are a lot of other ways the handoff, a newborn infant to the to some young girl who

Keywords: 999, senate, all

Transcript Highlights:

• However, during a routine newborn exam, Nurse Oskins detected a serious intestinal malformation, something
• However, during<00:03:28.720><c> a</c><00:03:29.040><c> routine</c><00:03:29.680><c> newborn</c><00:03
• :30.319><c> exam,</c><00:03:31.280><c> nurse</c> during a routine newborn exam, nurse during a routine
• newborn exam, nurse Oscans<00:03:32.480><c> detected</c><00:03:33.040><c> a</c><00:03:33.360><c> serious

Keywords: 912, senate, all

Transcript Highlights:

• So we should be bringing bills like the Break the Cycle Violence Act to the floor, perhaps have a discharge
• 58:29.760><c> do</c><04:58:29.878><c> it</c><04:58:30.120><c> right</c><04:58:30.280><c> now</c> discharge
• petition and do it right now discharge petition and do it right now but<04:58:31.080><c> let</c><04:
• Michael from Midlothian remains hopeful as his newborn son fights for strength in the NICU.
• </c><08:07:26.200><c> son</c> remains hopeful as his newborn son remains hopeful as his newborn son fights

Keywords: U.S. House of Representatives Floor Proceedings on Wednesday, January 22, 2025, 1012, house, all

Transcript Highlights:

• vector and genome editing facility, a master's degree program, and finally, the Sunshine Genetics newborn
• The Sunshine Genetics Act supports newborn whole genome sequencing across Florida.
• for approximately 250 to 600 conditions, in addition to the 60 conditions included in traditional newborn

Summary: The Health Professions and Program Subcommittee met with a quorum present and received a briefing from Melissa Jordan, Assistant Deputy Secretary for Health and chair of the Florida Rare Disease Advisory Council (ARDAC). Jordan explained that rare diseases affect fewer than 200,000 people each individually, but together impact an estimated 2.3 million Floridians. She reviewed ARDAC’s structure, its three subcommittees, and its 2025 legislative report recommendations, which focused on expanding Florida-specific data, disaster preparedness, state agency coordination, insurance oversight, provider education, faster diagnostic tools, research collaboration, and establishing centers of excellence. She also highlighted ARDAC’s work with other states and its effort to build an online repository of resources for families and providers. Jordan discussed the Andrew John Anderson Pediatric Rare Disease Grant Program, funded at $500,000 annually, which supported research awards at Florida State University and the University of Miami in 2024 and another University of Miami project in 2025. She also described House Bill 907 and the Sunshine Genetics Act pilot program, which created the Florida Institute for Pediatric Rare Diseases at FSU and a newborn whole-genome sequencing pilot to screen volunteer infants for hundreds of conditions beyond traditional newborn screening. The institute will include research, training, clinical care, a diagnostic lab, genome editing capacity, and a sequencing pilot overseen by a board, consortium, and steering committee. Members asked about interstate collaboration, the scope of data collection beyond Medicaid, how the council reduces family financial burdens, how families and providers can learn about available resources, and how ARDAC measures effectiveness. Jordan said Florida has learned from other states’ survey-based approaches and instead is using administrative data sources such as Medicaid, hospitalizations, emergency department visits, birth and death certificates, with more clinical data to be added over time. She said success is tracked through annual reports, ongoing work plans, and quarterly research reports that measure progress, patient enrollment, treatment outcomes, and potential follow-on funding. The meeting concluded after the presentation and questions, and the subcommittee adjourned without further business.

Transcript Highlights:

• See where we just have 8 it, which is Senate Bill 524. a newborn screenings.
• As you know, we have a process of newborn screening that is so effective in making sure that we diagnose
• And this bill simply adds to the newborn screening panel that is done routinely to Shane's Muscular Dystrophy
• So I there's no additional major problem with adding this to the newborn screening panel.
• And I'm not sure why anybody would oppose adding this to the newborn screening panel.

Keywords: 999, senate, all