Minnesota SF 1029: Unrestricted access requirement to services for diagnosis. monitoring, and treatment of rare diseases

Bill Text

1.1A bill for an act​
1.2relating to health; requiring unrestricted access to services for diagnosis, monitoring,​
1.3and treatment of rare diseases; amending Minnesota Statutes 2022, section​
1.4256B.0625, by adding a subdivision; proposing coding for new law in Minnesota​
1.5Statutes, chapter 62Q.​
1.6BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MINNESOTA:​
1.7Section 1. [62Q.451] UNRESTRICTED ACCESS TO SERVICES FOR THE​
1.8DIAGNOSIS, MONITORING, AND TREATMENT OF RARE DISEASES.​
1.9(a) No health plan company may restrict the choice of an enrollee as to where the enrollee​
1.10receives services from a licensed health care provider related to the diagnosis, monitoring,​
1.11and treatment of a rare disease or condition. Except as provided in paragraph (c), for purposes​
1.12of this section, "rare disease or condition" means any disease or condition:​
1.13(1) that affects fewer than 200,000 persons in the United States and is chronic, serious,​
1.14life-altering, or life-threatening;​
1.15(2) that affects more than 200,000 persons in the United States and a drug for treatment​
1.16has been designated as such pursuant to United States Code, title 21, section 360bb;​
1.17(3) that is labeled as a rare disease or condition on the Genetic and Rare Diseases​
1.18Information Center list created by the National Institutes of Health; or​
1.19(4) for which a patient:​
1.20(i) has received two or more clinical consultations from a primary care provider or​
1.21specialty provider that is specific to the presenting complaint;​
1​Section 1.​
23-00884as introduced​01/05/23 REVISOR SGS/AD​
SENATE​
STATE OF MINNESOTA​
S.F. No. 1029​
NINETY-THIRD SESSION​
(SENATE AUTHORS: MORRISON, Mann, Coleman, Boldon and Hoffman)​
OFFICIAL STATUS​D-PG​DATE​
Introduction and first reading​563​02/01/2023​
Referred to Health and Human Services​
Author added Boldon​1147​02/27/2023​
Comm report: To pass and re-referred to Commerce and Consumer Protection​1305​03/06/2023​
Author added Hoffman​1364​
Withdrawn and re-referred to Health and Human Services​2729​03/27/2023​
See SF2995​

2.1(ii) has documentation in the patient's medical record of a developmental delay through​
2.2standardized assessment, developmental regression, failure to thrive, or progressive​
2.3multisystemic involvement; and​
2.4(iii) had laboratory or clinical testing that failed to provide a definitive diagnosis or​
2.5resulted in conflicting diagnoses.​
2.6(b) Any services provided, referred for, or ordered by an out-of-network provider for a​
2.7patient who, before receiving and being notified of a definitive diagnosis, satisfied the​
2.8requirements in paragraph (a), clause (4), shall be governed by paragraph (d) even if the​
2.9subsequent definitive diagnosis does not meet the definition of rare disease or condition in​
2.10paragraph (a), clause (1), (2), or (3). Once the patient is definitively diagnosed with a disease​
2.11or condition that does not meet the definition of rare disease or condition in paragraph (a),​
2.12clause (1), (2), or (3), and the patient or a parent or guardian of a minor patient has been​
2.13notified of the diagnosis, any services provided, referred for, or ordered by an out-of-network​
2.14provider related to the diagnosis shall be governed by paragraph (d) for up to 60 days,​
2.15providing time for care to be transferred to a qualified in-network provider and to schedule​
2.16needed in-network appointments. After this 60-day period, subsequent services provided,​
2.17referred for, or ordered by an out-of-network provider related to the diagnosis are no longer​
2.18governed by paragraph (d).​
2.19(c) A rare disease or condition does not include an infectious disease that has widely​
2.20available and known protocols for diagnosis and treatment and that is commonly treated in​
2.21a primary care setting, even if it affects less than 200,000 persons in the United States.​
2.22(d) Cost-sharing requirements and benefit or services limitations for the diagnosis and​
2.23treatment of a rare disease or condition must not place a greater financial burden on the​
2.24enrollee or be more restrictive than those requirements for in-network medical treatment.​
2.25(e) A health plan company must provide enrollees with written information on the content​
2.26and application of this section and must train customer service representatives on the content​
2.27and application of this section.​
2.28(f) This section does not apply to medications obtained from a retail pharmacy.​
2.29EFFECTIVE DATE.This section is effective January 1, 2024, and applies to health​
2.30plans offered, issued, or renewed on or after that date.​
2​Section 1.​
23-00884as introduced​01/05/23 REVISOR SGS/AD​

3.1Sec. 2. Minnesota Statutes 2022, section 256B.0625, is amended by adding a subdivision​
3.2to read:​
3.3Subd. 68.Services for the diagnosis, monitoring, and treatment of rare​
3.4diseases.Medical assistance coverage for services related to the diagnosis, monitoring, and​
3.5treat