Amd §§3216, 3221 & 4303, Ins L; add §4406-j, Pub Health L
Requires insurers to provide insurance coverage for treatment of rare diseases, life-threatening conditions or diseases, degenerative and disabling conditions, or diagnoses involving medically fragile children, by a provider of the patient's choice.
NEW YORK STATE ASSEMBLY MEMORANDUM IN SUPPORT OF LEGISLATION submitted in accordance with Assembly Rule III, Sec 1(f)
BILL NUMBER: A2384A
SPONSOR: Eichenstein TITLE OF BILL:
An act to amend the insurance law and the public health law, in relation
to providing insurance coverage for rare diseases, life-threatening
conditions or diseases, degenerative and disabling conditions, or diag-
noses involving medically fragile children
PURPOSE:
To require insurance coverage in certain instances for rare diseases,
life-threatening conditions or diseases, degenerative and disabling
conditions, or diagnoses involving medically fragile children.
SUMMARY OF PROVISIONS:
Sections one through three amend various sections of the insurance law
to require insurance coverage for the above-referenced conditions by out
of network providers if (i) costs are equal or less than in network, and
there is no cost for traveling, (ii) advanced notice is provided to the
patient's network plan, and (iii) the chosen provider is specialized in
the area of treatment.
Section four provides for conforming changes to the public health law to
include health maintenance organizations in the requirements for treat-
ing the conditions covered by the insurance law.
Section five provides for an effective date of ninety days from enact-
ment.
JUSTIFICATION:
Individuals who are diagnosed with rare diseases, life-threatening or
life-altering diseases, or are deemed medically fragile children are
already undergoing enormous amounts of stress without having to worry
about whether their medical insurance will cover their care. Their focus
should instead be on who is going to provide them with the best chance
of survival or success from their diagnosis. This should also be the
policy of the State. No one should be told that there is a better more
qualified specialist available at the same cost, but they cannot see
them because they are arbitrarily either in or out of network.
This legislation is intended to offer individuals confronted with rare
or life-altering circumstances the ability to choose the best treatment
option for them. These changes take into account mandates on the insur-
ance plans by controlling costs, providing notice, and ensuring the
chosen provider is a qualified specialist. Individuals who find them-
selves in these daunting circumstances should have the ability to
explore options, even if those are out of network, in order to provide
them with the greatest chance of a positive outcome.
LEGISLATIVE HISTORY:
06/07/24: A9539- referred to Rules
FISCAL IMPLICATIONS:
None to the State.
EFFECTIVE DATE:
Ninety days after it shall have become law.
STATE OF NEW YORK
________________________________________________________________________
2384--A
Cal. No. 86
2025-2026 Regular Sessions
IN ASSEMBLY
January 16, 2025
___________
Introduced by M. of A. EICHENSTEIN, WEPRIN, GALLAGHER, REYES, DILAN,
ROSENTHAL, WIEDER, STECK, ALVAREZ, KAY, LASHER, SANTABARBARA, TORRES,
TAPIA, GALLAHAN, JACOBSON, GRIFFIN, E. BROWN, OTIS, COLTON, BLUMEN-
CRANZ, BLANKENBUSH, BUTTENSCHON -- read once and referred to the
Committee on Insurance -- ordered to a third reading, amended and
ordered reprinted, retaining its place in the order of third reading
AN ACT to amend the insurance law and the public health law, in relation
to providing insurance coverage for rare diseases, life-threatening
conditions or diseases, degenerative and disabling conditions, or
diagnoses involving medically fragile children
The People of the State of New York, represented in Senate and Assem-bly, do enact as follows:
1 Section 1. Subsection (i) of section 3216 of the insurance law is
2 amended by adding a new paragraph 42 to read as follows:
3 (42) (A) Every policy which provides hospital, surgical, medical or
4 major medical coverage shall provide coverage for medically necessary
5 services from a chosen provider for a confirmed diagnosis that is deemed
6 to be a rare disease, life-threatening condition or disease, degenera-
7 tive and disabling condition, or involves a medically fragile child,
8 with no restriction to a plan network, if the following conditions are
9 met:
10 (i) (A) The costs of the chosen provider are equal to or less than the
11 average cost that would have otherwise been paid to a local network
12 provider who possesses a similar subspecialty as such chosen provider;
13 and
14 (B) the patient's treating specialist or primary care provider
15 provides a written statement to recommend the chosen provider for the
16 particular disease.
17 (ii) The chosen provider or the patient's primary care physician
18 provides advance notice to such patient's network plan prior to a
19 planned procedure covered pursuant to this paragraph.
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[] is old law to be omitted.
LBD02918-02-6
A. 2384--A 2
1 (iii) The chosen provider is accredited or designated by the depart-
2 ment of health, the federal government, or a voluntary national health
3 organization as having special expertise in treating, or has demon-
4 strated a clinical focus in the area of, the confirmed diagnosis for
5 which coverage is sought pursuant to this paragraph. Provided however,
6 that nothing in this paragraph shall require such chosen provider to be
7 participating in the patient's network or located within the state;
8 provided further that nothing herein shall obligate to cover cost
9 related to travel to the chosen provider.
10 (B) For the purposes of this paragraph, the following terms shall have
11 the following meanings:
12 (i) "Rare disease" shall have the same meaning as set forth in subdi-
13 vision seven-g of section forty-nine hundred of the public health law.
14 (ii) "Life-threatening condition or disease" shall have the same mean-
15 ing as set forth in subdivision seven-a of section forty-nine hundred of
16 the public health law.
17 (iii) "Degenerative and disabling condition" shall mean a condition or
18 disease which (a) requires specialized medical care over a prolonged
19 period of time, or (b) qualifies the patient as a disabled person, as
20 defined by subdivision five of section two hundred eight of the social
21 services law.
22 (iv) "Medically fragile child" shall have the same meaning as set
23 forth in subdivision nine of section forty-four hundred one of the
24 public health law.
25 § 2. Subsection (k) of section 3221 of the insurance law is amended by
26 adding a new paragraph 24 to read as follows:
27 (24) (A) Every policy which provides hospital, surgical, medical or
28 major medical coverage shall provide coverage for medically necessary
29 services from a chosen provider for a confirmed diagnosis that is deemed
30 to be a rare disease, life-threatening condition or disease, degenera-
31 tive and disabling condition, or involves a medically fragile child,
32 with no restriction to a plan network, if the following conditions are
33 met:
34 (i) (I) The costs of the chosen provider are equal to or less than the
35 average cost that would have otherwise been paid to a local network
36 provider who possesses a similar subspecialty as such chosen provider;
37 and
38 (II) the patient's treating specialist or primary care provider
39 provides a written statement to recommend the chosen provider for the
40 particular disease.
41 (ii) The chosen provider or the patient's primary care physician
42 provides advance notice to such patient's network plan prior to a
43 planned procedure covered pursuant to this paragraph.
44 (iii) The chosen provider is accredited or designated by the depart-
45 ment of health, the federal government, or a voluntary national health
46 organization as having special expertise in treating, or has demon-
47 strated a clinical focus in the area of, the confirmed diagnosis for
48 which coverage is sought pursuant to this paragraph. Provided however,
49 that nothing in this paragraph shall require such chosen provider to be
50 participating in the patient's network or located within the state;
51 provided further that nothing herein shall obligate to cover cost
52 related to travel to the chosen provider.
53 (B) For the purposes of this paragraph, the following terms shall have
54 the following meanings:
55 (i) "Rare disease" shall have the same meaning as set forth in subdi-
56 vision seven-g of section forty-nine hundred of the public health law.
A. 2384--A 3
1 (ii) "Life-threatening condition or disease" shall have the same mean-
2 ing as set forth in subdivision seven-a of section forty-nine hundred of
3 the public health law.
4 (iii) "Degenerative and disabling condition" shall mean a condition or
5 disease which (a) requires specialized medical care over a prolonged
6 period of time, or (b) qualifies the patient as a disabled person, as
7 defined by subdivision five of section two hundred eight of the social
8 services law.
9 (iv) "Medically fragile child" shall have the same meaning as set
10 forth in subdivision nine of section forty-four hundred one of the
11 public health law.
12 § 3. Section 4303 of the insurance law is amended by adding a new
13 subsection (xx) to read as follows:
14 (xx) (1) Every policy which provides hospital, surgical, medical or
15 major medical coverage shall provide coverage for medically necessary
16 services from a chosen provider for a confirmed diagnosis that is deemed
17 to be a rare disease, life-threatening condition or disease, degenera-
18 tive and disabling condition, or involves a medically fragile child,
19 with no restriction to a plan network, if the following conditions are
20 met:
21 (A) (i) The costs of the chosen provider are equal to or less than the
22 average cost that would have otherwise been paid to a local network
23 provider who possesses a similar subspecialty as such chosen provider;
24 and
25 (ii) the patient's treating specialist or primary care provider
26 provides a written statement to recommend the chosen provider for the
27 particular disease.
28 (B) The chosen provider or the patient's primary care physician
29 provides advance notice to such patient's network plan prior to a
30 planned procedure covered pursuant to this subsection.
31 (C) The chosen provider is accredited or designated by the department
32 of health, the federal government, or a voluntary national health organ-
33 ization as having special expertise in treating, or has demonstrated a
34 clinical focus in the area of, the confirmed diagnosis for which cover-
35 age is sought pursuant to this subsection. Provided however, that noth-
36 ing in this subsection shall require such chosen provider to be partic-
37 ipating in the patient's network or located within the state; provided
38 further that nothing herein shall obligate to cover cost related to
39 travel to the chosen provider.
40 (2) For the purposes of this subsection, the following terms shall
41 have the following meanings:
42 (A) "Rare disease" shall have the same meaning as set forth in subdi-
43 vision seven-g of section forty-nine hundred of the public health law.
44 (B) "Life-threatening condition or disease" shall have the same mean-
45 ing as set forth in subdivision seven-a of section forty-nine hundred of
46 the public health law.
47 (C) "Degenerative and disabling condition" shall mean a condition or
48 disease which (i) requires specialized medical care over a prolonged
49 period of time, or (ii) qualifies the patient as a disabled person, as
50 defined by subdivision five of section two hundred eight of the social
51 services law.
52 (D) "Medically fragile child" shall have the same meaning as set forth
53 in subdivision nine of section forty-four hundred one of the public
54 health law.
55 § 4. The public health law is amended by adding a new section 4406-j
56 to read as follows:
A. 2384--A 4
1 § 4406-j. Extraordinary out-of-network coverage. No health maintenance
2 organization subject to this article shall, by contract, written policy,
3 or procedure, limit a patient enrollee's direct access to services from
4 a chosen provider for a rare disease, life-threatening condition or
5 disease, degenerative and disabling condition, or diagnosis involving a
6 medically fragile child if such services are covered pursuant to para-
7 graph forty-two of subsection (i) of section three thousand sixteen of
8 the insurance law, paragraph twenty-four of subsection (k) of section
9 three thousand two hundred twenty-one of the insurance law, or
10 subsection (xx) of section four thousand three hundred three of the
11 insurance law; provided, however, that such patient enrollee's access to
12 such services are otherwise subject to the terms and conditions of the
13 plan under which such patient enrollee is covered.
14 § 5. This act shall take effect on the ninetieth day after it shall
15 have become a law and shall apply to all insurance policies and
16 contracts issued, renewed, modified, altered, or amended on or after
17 such effective date.
