S-1023.1

SENATE BILL 5668

State of Washington

69th Legislature

2025 Regular Session

BySenators Harris, Dozier, and Lovelett

Read first time 02/05/25.Referred to Committee on Health & Long-Term Care.

AN ACT Relating to ensuring timely, efficient, and evidence-based additions to newborn screenings; amending RCW 70.83.020, 70.83.023, and 70.83.030; reenacting and amending RCW 43.79A.040 and 43.79A.040; adding a new section to chapter 70.83 RCW; adding a new section to chapter 43.70 RCW; creating a new section; providing an effective date; and providing an expiration date.

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF WASHINGTON:

NEW SECTION. Sec. 1. The legislature recognizes the critical importance of newborn screenings in identifying rare genetic and metabolic conditions that can otherwise go undiagnosed, leading to irreversible harm. The legislature recognizes the department of health's newborn screening program currently tests newborns for 32 rare congenital conditions through drops of blood collected within the first days and weeks of birth and funded through a one-time fee generally billed through the birthing facility. Further, the legislature recognizes that the federal recommended uniform screening panel is established and periodically updated through a science-based and deliberative review process by a national committee of experts in newborn screening and rare disease. It is the intent of the legislature that additions to the newborn screening panel be timely, efficient, and evidence-based, and that this be achieved by leveraging the recommended uniform screening panel, ensuring intra-agency coordination, requiring focused feasibility reviews, and ensuring fees collected for newborn screenings are readily available to implement the requirements under chapter 70.83 RCW. Furthermore, the legislature intends to protect the ability of the public to petition for additions to the newborn screening panel outside of the recommended uniform screening panel.

Sec. 2. RCW 70.83.020 and 2014 c 18 s 1 are each amended to read as follows:

(1) It shall be the duty of the department of health to require screening tests of all newborn infants born in any setting. Each hospital or health care provider attending a birth outside of a hospital shall collect and submit a sample blood specimen for all newborns no more than ((forty-eight))48 hours following birth.

(2) The department of health shall conduct screening tests of samples for the detection of ((phenylketonuria and other heritable or metabolic disorders leading to intellectual disabilities or physical defects as defined))the conditions listed in the newborn screening panel determined by the state board of health in rule as required under section 3 of this act: PROVIDED, That no such tests shall be given to any newborn infant whose parents or guardian object thereto on the grounds that such tests conflict with their religious tenets and practices.

(((2)))(3) The sample required in subsection (1) of this section must be received by the department (([of health]))of health within ((seventy-two))72 hours of the collection of the sample, excluding any day that the Washington state public health laboratory is closed.

NEW SECTION. Sec. 3. A new section is added to chapter 70.83 RCW to read as follows:

(1) By July 1, 2026, the state board of health shall reestablish in rule the newborn screening panel that newborns must be screened under RCW 70.83.020. In reestablishing the initial newborn screening panel, the state board of health shall include:

(a) All conditions newborns must be screened for as required by the existing state board of health rules as of January 1, 2025;

(b) All conditions included in the existing federal recommended uniform screening panel as of January 1, 2025.

(2) Within 12 months of the addition of a new condition to the federal recommended uniform screening panel, the state board of health shall determine whether to add that new condition to the newborn screening panel. In making its determination, the state board of health must avoid duplicating research and evaluation efforts leading to the addition of the condition to the federal recommended uniform screening panel, and complete and consider the findings of a feasibility review.

(a) The feasibility review must identify costs to screen for the condition, federal funding available to aid implementation of the screening of the new condition, recommendations of changes to the fee charged for the newborn screening, and a timeline for including the new condition on the newborn screening panel.

(b) In conducting the feasibility review, the board shall consult with the health care authority to ensure consideration of impacts on state purchased health care programs under chapter 41.05 RCW and medical care programs under chapter 74.09 RCW and with the department of health.

(c) If the board determines that the condition should be included in the newborn screening panel, the board shall complete rule making to include the condition in the newborn screening panel within 12 months of the determination.

(3) Members of the public may request that the state board of health consider additions to the newborn screening panel.

(a) The board shall adopt standards for reviewing such requests to determine whether there is sufficient scientific evidence available to evaluate the proposed addition.

(b) For proposed additions that have sufficient scientific evidence to conduct an evaluation, the board shall conduct a feasibility review as described in subsection (2)(a) and (b) of this section.

(i) Whether screening technology exists that can be made available to mass screen newborns;

(ii) The availability of diagnostic testing, treatment, and interventions; and

(iii) The need for population-based rather than risk-based screening or other approaches.

(d) If the board determines that the condition should be included in the newborn screening panel, the board shall complete rule making to include the condition in the newborn screening panel within 12 months of the determination.

(4) The board may add other new conditions to the newborn screening panel in rule if it completes the feasibility review as described in subsection (2)(a) and (b) of this section.

(5) The board shall adopt rules as necessary to implement and administer this section.

Sec. 4. RCW 70.83.023 and 2010 1st sp.s. c 17 s 1 are each amended to read as follows:

(1) The department of health under its authority in RCW 43.20B.020 may charge and collect a reasonable fee from parents, guardians, or responsible parties for the costs of newborn screening.

(2) The department of health has the authority to collect a fee of ((eight dollars and forty cents))$8.40 from the parents or other responsible party of each infant screened for congenital disorders as defined by the state board of health under RCW 70.83.020 to fund specialty clinics that provide treatment services for those with the defined disorders. The fee may also be used to support organizations conducting community outreach, education, and adult support related to sickle cell disease. The fee collected under this subsection is in addition to the fee collected by the department of health for the purposes of the newborn screening under subsection (1) of this section.

(3) The ((fee))fees authorized under this section may be collected through the facility where a screening specimen is obtained.

Sec. 5. RCW 70.83.030 and 1991 c 3 s 349 are each amended to read as follows:

Laboratories, attending physicians, hospital administrators, or other persons performing or requesting the performance of tests for ((phenylketonuria))the diseases and conditions on the newborn screening panel under this chapter shall report to the department of health all positive tests. ((The state board of health by rule shall, when it deems appropriate, require that positive tests for other heritable and metabolic disorders covered by this chapter be reported to the state department of health by such persons or agencies requesting or performing such tests.))

NEW SECTION. Sec. 6. A new section is added to chapter 43.70 RCW to read as follows:

The newborn screening revenue account is created in the custody of the state treasurer. All receipts collected under chapter 70.83 RCW must be deposited into the account. Expenditures from the account may only be used for activities directly related to implementing and administering chapter 70.83 RCW. Only the secretary or the secretary's designee may authorize expenditure from the account. The account is subject to allotment procedures under chapter 43.88 RCW, but an appropriation is not required for expenditures.

Sec. 7. RCW 43.79A.040 and 2024 c 327 s 16 and 2024 c 168 s 10 are each reenacted and amended to read as follows:

(1) Money in the treasurer's trust fund may be deposited, invested, and reinvested by the state treasurer in accordance with RCW 43.84.080 in the same manner and to the same extent as if the money were in the state treasury, and may be commingled with moneys in the state treasury for cash management and cash balance purposes.

(2) All income received from investment of the treasurer's trust fund must be set aside in an account in the treasury trust fund to be known as the investment income account.

(3) The investment income account may be utilized for the payment of purchased banking services on behalf of treasurer's trust funds including, but not limited to, depository, safekeeping, and disbursement functions for the state treasurer or affected state agencies. The investment income account is subject in all respects to chapter 43.88 RCW, but no appropriation is required for payments to financial institutions. Payments must occur prior to distribution of earnings set forth in subsection (4) of this section.

(4)(a) Monthly, the state treasurer must distribute the earnings credited to the investment income account to the state general fund except under (b), (c), and (d) of this subsection.

(b) The following accounts and funds must receive their proportionate share of earnings based upon each account's or fund's average daily balance for the period: The 24/7 sobriety account, the Washington promise scholarship account, the Gina Grant Bull memorial legislative page scholarship account, the Rosa Franklin legislative internship program scholarship account, the Washington advanced college tuition payment program account, the Washington college savings program account, the accessible communities account, the Washington achieving a better life experience program account, the Washington career and college pathways innovation challenge program account, the community and technical college innovation account, the agricultural local fund, the American Indian scholarship endowment fund, the behavioral health loan repayment and scholarship program account, the Billy Frank Jr. national statuary hall collection fund, the foster care scholarship endowment fund, the foster care endowed scholarship trust fund, the contract harvesting revolving account, the Washington state combined fund drive account, the commemorative works account, the county 911 excise tax account, the county road administration board emergency loan account, the toll collection account, the developmental disabilities endowment trust fund, the energy account, the energy facility site evaluation council account, the fair fund, the family and medical leave insurance account, the Fern Lodge maintenance account, the fish and wildlife federal lands revolving account, the natural resources federal lands revolving account, the food animal veterinarian conditional scholarship account, the forest health revolving account, the fruit and vegetable inspection account, the educator conditional scholarship account, the game farm alternative account, the GET ready for math and science scholarship account, the Washington global health technologies and product development account, the grain inspection revolving fund, the Washington history day account, the industrial insurance rainy day fund, the juvenile accountability incentive account, the law enforcement officers' and firefighters' plan 2 expense fund, the local tourism promotion account, the low-income home rehabilitation account, the medication for people living with HIV rebate revenue account, the newborn screening revenue account, the homeowner recovery account, the multiagency permitting team account, the northeast Washington wolf-livestock management account, the pollution liability insurance program trust account, the produce railcar pool account, the public use general aviation airport loan revolving account, the regional transportation investment district account, the rural rehabilitation account, the Washington sexual assault kit account, the stadium and exhibition center account, the youth athletic facility account, the self-insurance revolving fund, the children's trust fund, the Washington horse racing commission Washington bred owners' bonus fund and breeder awards account, the Washington horse racing commission class C purse fund account, the individual development account program account, the Washington horse racing commission operating account, the life sciences discovery fund, the Washington state library-archives building account, the reduced cigarette ignition propensity account, the center for deaf and hard of hearing youth account, the school for the blind account, the Millersylvania park trust fund, the public employees' and retirees' insurance reserve fund, the school employees' benefits board insurance reserve fund, the public employees' and retirees' insurance account, the school employees' insurance account, the long-term services and supports trust account, the radiation perpetual maintenance fund, the Indian health improvement reinvestment account, the department of licensing tuition recovery trust fund, the student achievement council tuition recovery trust fund, the tuition recovery trust fund, the industrial insurance premium refund account, the mobile home park relocation fund, the natural resources deposit fund, the Washington state health insurance pool account, the federal forest revolving account, the Washington saves administrative treasury trust account, and the library operations account.

(c) The following accounts and funds must receive 80 percent of their proportionate share of earnings based upon each account's or fund's average daily balance for the period: The advance right-of-way revolving fund, the advanced environmental mitigation revolving account, the federal narcotics asset forfeitures account, the high occupancy vehicle account, the local rail service assistance account, and the miscellaneous transportation programs account.

(d) Any state agency that has independent authority over accounts or funds not statutorily required to be held in the custody of the state treasurer that deposits funds into a fund or account in the custody of the state treasurer pursuant to an agreement with the office of the state treasurer shall receive its proportionate share of earnings based upon each account's or fund's average daily balance for the period.

(5) In conformance with Article II, section 37 of the state Constitution, no trust accounts or funds shall be allocated earnings without the specific affirmative directive of this section.

Sec. 8. RCW 43.79A.040 and 2024 c 327 s 17 and 2024 c 168 s 11 are each reenacted and amended to read as follows:

(2) All income received from investment of the treasurer's trust fund must be set aside in an account in the treasury trust fund to be known as the investment income account.

(4)(a) Monthly, the state treasurer must distribute the earnings credited to the investment income account to the state general fund except under (b), (c), and (d) of this subsection.

(b) The following accounts and funds must receive their proportionate share of earnings based upon each account's or fund's average daily balance for the period: The 24/7 sobriety account, the Washington promise scholarship account, the Gina Grant Bull memorial legislative page scholarship account, the Rosa Franklin legislative internship program scholarship account, the Washington advanced college tuition payment program account, the Washington college savings program account, the accessible communities account, the Washington achieving a better life experience program account, the Washington career and college pathways innovation challenge program account, the community and technical college innovation account, the agricultural local fund, the American Indian scholarship endowment fund, the behavioral health loan repayment and scholarship program account, the Billy Frank Jr. national statuary hall collection fund, the foster care scholarship endowment fund, the foster care endowed scholarship trust fund, the contract harvesting revolving account, the Washington state combined fund drive account, the commemorative works account, the county 911 excise tax account, the county road administration board emergency loan account, the toll collection account, the developmental disabilities endowment trust fund, the energy account, the energy facility site evaluation council account, the fair fund, the family and medical leave insurance account, the Fern Lodge maintenance account, the fish and wildlife federal lands revolving account, the natural resources federal lands revolving account, the food animal veterinarian conditional scholarship account, the forest health revolving account, the fruit and vegetable inspection account, the educator conditional scholarship account, the game farm alternative account, the GET ready for math and science scholarship account, the Washington global health technologies and product development account, the grain inspection revolving fund, the Washington history day account, the industrial insurance rainy day fund, the juvenile accountability incentive account, the law enforcement officers' and firefighters' plan 2 expense fund, the local tourism promotion account, the low-income home rehabilitation account, the medication for people living with HIV rebate revenue account, the newborn screening revenue account, the homeowner recovery account, the multiagency permitting team account, the northeast Washington wolf-livestock management account, the produce railcar pool account, the public use general aviation airport loan revolving account, the regional transportation investment district account, the rural rehabilitation account, the Washington sexual assault kit account, the stadium and exhibition center account, the youth athletic facility account, the self-insurance revolving fund, the children's trust fund, the Washington horse racing commission Washington bred owners' bonus fund and breeder awards account, the Washington horse racing commission class C purse fund account, the individual development account program account, the Washington horse racing commission operating account, the life sciences discovery fund, the Washington state library-archives building account, the reduced cigarette ignition propensity account, the center for deaf and hard of hearing youth account, the school for the blind account, the Millersylvania park trust fund, the public employees' and retirees' insurance reserve fund, the school employees' benefits board insurance reserve fund, the public employees' and retirees' insurance account, the school employees' insurance account, the long-term services and supports trust account, the radiation perpetual maintenance fund, the Indian health improvement reinvestment account, the department of licensing tuition recovery trust fund, the student achievement council tuition recovery trust fund, the tuition recovery trust fund, the industrial insurance premium refund account, the mobile home park relocation fund, the natural resources deposit fund, the Washington state health insurance pool account, the federal forest revolving account, the Washington saves administrative treasury trust account, and the library operations account.

(5) In conformance with Article II, section 37 of the state Constitution, no trust accounts or funds shall be allocated earnings without the specific affirmative directive of this section.

NEW SECTION. Sec. 9. Section 7 of this act expires July 1, 2030.

NEW SECTION. Sec. 10. Section 8 of this act takes effect July 1, 2030.

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