HF 384

as introduced - 93rd Legislature (2023 - 2024) Posted on 02/27/2023 04:33pm

A bill for an act
relating to health; requiring unrestricted access to services for diagnosis, monitoring,
and treatment of rare diseases; amending Minnesota Statutes 2022, section
256B.0625, by adding a subdivision; proposing coding for new law in Minnesota
Statutes, chapter 62Q.

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

Section 1.

new text begin [62Q.451] UNRESTRICTED ACCESS TO SERVICES FOR THE
DIAGNOSIS, MONITORING, AND TREATMENT OF RARE DISEASES.
new text end

new text begin (a) No health plan company may restrict the choice of an enrollee as to where the enrollee
receives services from a licensed health care provider related to the diagnosis, monitoring,
and treatment of a rare disease or condition. Except as provided in paragraph (c), for purposes
of this section, "rare disease or condition" means any disease or condition:
new text end

new text begin (1) that affects fewer than 200,000 persons in the United States and is chronic, serious,
life-altering, or life-threatening;
new text end

new text begin (2) that affects more than 200,000 persons in the United States and a drug for treatment
has been designated as such pursuant to United States Code, title 21, section 360bb;
new text end

new text begin (3) that is labeled as a rare disease or condition on the Genetic and Rare Diseases
Information Center list created by the National Institutes of Health; or
new text end

new text begin (4) for which a patient:
new text end

new text begin (i) has received two or more clinical consultations from a primary care provider or
specialty provider that is specific to the presenting complaint;
new text end

new text begin (ii) has documentation in the patient's medical record of a developmental delay through
standardized assessment, developmental regression, failure to thrive, or progressive
multisystemic involvement; and
new text end

new text begin (iii) had laboratory or clinical testing that failed to provide a definitive diagnosis or
resulted in conflicting diagnoses.
new text end

new text begin (b) Any services provided, referred for, or ordered by an out-of-network provider for a
patient who, before receiving and being notified of a definitive diagnosis, satisfied the
requirements in paragraph (a), clause (4), shall be governed by paragraph (d) even if the
subsequent definitive diagnosis does not meet the definition of rare disease or condition in
paragraph (a), clause (1), (2), or (3). Once the patient is definitively diagnosed with a disease
or condition that does not meet the definition of rare disease or condition in paragraph (a),
clause (1), (2), or (3), and the patient or a parent or guardian of a minor patient has been
notified of the diagnosis, any services provided, referred for, or ordered by an out-of-network
provider related to the diagnosis shall be governed by paragraph (d) for up to 60 days,
providing time for care to be transferred to a qualified in-network provider and to schedule
needed in-network appointments. After this 60-day period, subsequent services provided,
referred for, or ordered by an out-of-network provider related to the diagnosis are no longer
governed by paragraph (d).
new text end

new text begin (c) A rare disease or condition does not include an infectious disease that has widely
available and known protocols for diagnosis and treatment and that is commonly treated in
a primary care setting, even if it affects less than 200,000 persons in the United States.
new text end

new text begin (d) Cost-sharing requirements and benefit or services limitations for the diagnosis and
treatment of a rare disease or condition must not place a greater financial burden on the
enrollee or be more restrictive than those requirements for in-network medical treatment.
new text end

new text begin (e) A health plan company must provide enrollees with written information on the content
and application of this section and must train customer service representatives on the content
and application of this section.
new text end

new text begin (f) This section does not apply to medications obtained from a retail pharmacy.
new text end

new text begin EFFECTIVE DATE. new text end

new text begin This section is effective January 1, 2024, and applies to health
plans offered, issued, or renewed on or after that date.
new text end

Sec. 2.

Minnesota Statutes 2022, section 256B.0625, is amended by adding a subdivision
to read:

new text begin Subd. 68. new text end

new text begin Services for the diagnosis, monitoring, and treatment of rare
diseases. new text end

new text begin Medical assistance coverage for services related to the diagnosis, monitoring, and
treatment of a rare disease or condition must meet the requirements in section 62Q.451.
new text end

new text begin EFFECTIVE DATE. new text end

new text begin This section is effective January 1, 2024.
new text end