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SECOND REGULAR SESSION
HOUSE BILL NO. 2513
103RD GENERAL ASSEMBL Y
INTRODUCED BY REPRESENT A TIVE BYRNES.
5089H.02I JOSEPH ENGLER, Chief Clerk
AN ACT
T o amend chapter 191, RSMo, by adding thereto six new sections relating to children with
rare or medically complex conditions, with a delayed ef fective date.
Be it enacted by the General Assembly of the state of Missouri, as follows:
Section A. Chapter 191, RSMo, is amended by adding thereto six new sections, to be
2 known as sections 191.273, 191.276, 191.279, 191.282, 191.285, and 191.288, to read as
3 follows:
191.273. 1. Sections 191.273 to 191.288 shall be known and may be cited as
2 "Maddie's Law: The Rar e Pediatric Disease Car e and Pr otocol Pr otection Act".
3 2. As used in sections 191.273 to 191.288, the following terms mean:
4 (1) "Car egiver", any paren t, guardian, or other person having control or
5 custody of a child with a rar e or medically complex condition;
6 (2) "Child", any person under eighteen years of age;
7 (3) "Department", the department of health and senior services;
8 (4) "Emergency services", the same meaning given to the term in section
9 190.100;
10 (5) "Health care pr ofessional", the same meaning given to the term in section
11 376.1350;
12 (6) "Health care provi der", any hospital as defined in section 197.020,
13 emergency services pro vider , or other institution pr oviding health car e services;
14 (7) "Health care service", the same meaning given to the term in section
15 376.1350;
EXPLANA TION — Matter enclosed in bold-faced brackets [thus] in the above bill is not enacted and is
intended to be omitted from the law . Matter in bold-face type in the above bill is proposed language.
16 (8) "Individualized car e plan", a written, physician-approv ed plan for the
17 management of acute and chr onic manifestations of a child's rar e or medically complex
18 condition;
19 (9) "Prot ocol deviation", any departur e fro m an individualized car e plan,
20 emergency pr otocol, or evidence-based tr eatment plan for a child with a rar e or
21 medically complex condition without documented clinical justification;
22 (10) "Rar e or medically complex condition", any condition that:
23 (a) Affects fewer than two hundr ed thousand individuals in the United States; or
24 (b) Is associated with a high risk of acute deterioration requi ring specialized
25 management as documented by a tr eating physician;
26 (1 1) "Significant pr otocol deviation", any pr otocol deviation that r esults in harm
27 to the child or that has the potential to res ult in harm to the child.
191.276. 1. All health care pr oviders for a child with a rar e or medically
2 complex condition shall collaborate to develop, document, and maintain an
3 individualized care plan for the child.
4 2. The individualized care plan shall include, at minimum:
5 (1) Clear instructions for emergency car e including, but not limited to,
6 medication dosages, ro utes of administration, and escalation proced ures; and
7 (2) Identification of the child's primary specialist res ponsible for oversight of the
8 plan.
9 3. The child's health car e pro viders shall revie w and make any necessary
10 changes to the individualized car e plan:
11 (1) At least annually; and
12 (2) After any hospitalization of the child. Any revi ew r equir ed under this
13 subdivision may count as the annual revi ew r equir ed under subdivision (1) of this
14 subsection.
15 4. The individualized care plan shall rem ain active in all electr onic and paper -
16 based health reco rds. Updates to the individualized care plan shall not be made
17 without:
18 (1) The explicit written appr oval of the primary specialist for the child; and
19 (2) Recognition of the concerns of the child's legal guardian or guardians.
20 5. An emergency services provi der shall be consider ed a health care provi der for
21 a child under sections 191.273 to 191.288 if the emergency services pr ovider regula rly
22 transports patients to a hospital tr eating the child. The hospital trea ting the child shall
23 notify each such emergency services provi der of its status as a health car e pr ovider for
24 the child under sections 191.273 to 191.288.
191.279. 1. Hospitals and emergency services prov iders shall maintain logs of:
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2 (1) Adher ence to individualized care plans;
3 (2) Pr otocol deviations; and
4 (3) Handoffs between emergency services pr oviders and hospital care teams for
5 a child with a rare or medically complex condition.
6 2. Hospitals and emergency services pr oviders shall creat e repo rting proced ures
7 to pro vide documentation of any significant protocol deviations within twenty-four
8 hours to:
9 (1) The child's primary specialist; and
10 (2) The quality and safety officer designated by the hospital.
191.282. 1. The department shall audit health care prov iders for compliance
2 with sections 191.273 to 191.288 following receip t of repor ts of noncompliance.
3 2. If the department determines that a health care pr ovider has violated any
4 pr ovision of sections 191.273 to 191.288, the department may order the health car e
5 pr ovider to implement a correct ive action plan.
191.285. 1. Each health care provi der shall offer and re quir e training on rar e
2 diseases for all pediatric health car e pr ofessionals. The training shall include
3 instruction on how to recogn ize high-risk conditions and adher e to individualized
4 car e plans.
5 2. Health car e pro viders ar e encouraged to maintain a centralized reg istry of
6 individualized care plans for all childre n with rare or medically complex conditions that
7 is accessible to authorized health care pr ofessionals and emergency services personnel.
191.288. 1. A health care pr ovider shall not ret aliate against a car egiver for
2 advocating for adher ence to the individualized car e plan or r eporting pro tocol
3 deviations.
4 2. If systemic failur es in implementation of a child's individualized care plan
5 occur and a poor outcome would have been avoidable, hospital leadership shall meet
6 with the child's careg iver , upon the car egiver's reque st, for any review of the
7 individualized care plan req uire d under section 191.276.
Section B. The enactment of sections 191.273, 191.276, 191.279, 191.282, 191.285,
2 and 191.288 of this act shall become ef fective on March 1, 2027.
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