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: A9539
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 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 consider
who they are going to seek medical care from. 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 also take into account mandates on the
insurance 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: New bill.
LEGISLATIVE HISTORY:
FISCAL IMPLICATIONS FOR STATE AND LOCAL GOVERNMENTS:
None to the State.
EFFECTIVE DATE:
Ninety days after it shall have become law.
STATE OF NEW YORK
________________________________________________________________________
9539
IN ASSEMBLY
March 20, 2024
___________
Introduced by M. of A. EICHENSTEIN -- read once and referred to the
Committee on Insurance
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 39 to read as follows:
3 (39) (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.
20 (iii) The chosen provider is accredited or designated by the depart-
21 ment of health, the federal government, or a voluntary national health
22 organization as having special expertise in treating, or has demon-
23 strated a clinical focus in the area of, the confirmed diagnosis for
24 which coverage is sought pursuant to this paragraph. Provided however,
25 that nothing in this paragraph shall require such chosen provider to be
26 participating in the patient's network or located within the state;
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[] is old law to be omitted.
LBD14125-05-4
A. 9539 2
1 provided further that nothing herein shall obligate to cover cost
2 related to travel to the chosen provider.
3 (B) For the purposes of this paragraph, the following terms shall have
4 the following meanings:
5 (i) "Rare disease" shall have the same meaning as set forth in subdi-
6 vision seven-g of section forty-nine hundred of the public health law.
7 (ii) "Life-threatening condition or disease" shall have the same mean-
8 ing as set forth in subdivision seven-a of section forty-nine hundred of
9 the public health law.
10 (iii) "Degenerative and disabling condition" shall mean a condition or
11 disease which (a) requires specialized medical care over a prolonged
12 period of time, or (b) qualifies the patient as a disabled person, as
13 defined by subdivision five of section two hundred eight of the social
14 services law.
15 (iv) "Medically fragile child" shall have the same meaning as set
16 forth in subdivision nine of section forty-four hundred one of the
17 public health law.
18 § 2. Subsection (k) of section 3221 of the insurance law is amended by
19 adding a new paragraph 23 to read as follows:
20 (23) (A) Every policy which provides hospital, surgical, medical or
21 major medical coverage shall provide coverage for medically necessary
22 services from a chosen provider for a confirmed diagnosis that is deemed
23 to be a rare disease, life-threatening condition or disease, degenera-
24 tive and disabling condition, or involves a medically fragile child,
25 with no restriction to a plan network, if the following conditions are
26 met:
27 (i) (I) The costs of the chosen provider are equal to or less than the
28 average cost that would have otherwise been paid to a local network
29 provider who possesses a similar subspecialty as such chosen provider;
30 and
31 (II) the patient's treating specialist or primary care provider
32 provides a written statement to recommend the chosen provider for the
33 particular disease.
34 (ii) The chosen provider or the patient's primary care physician
35 provides advance notice to such patient's network plan prior to a
36 planned procedure covered pursuant to this paragraph.
37 (iii) The chosen provider is accredited or designated by the depart-
38 ment of health, the federal government, or a voluntary national health
39 organization as having special expertise in treating, or has demon-
40 strated a clinical focus in the area of, the confirmed diagnosis for
41 which coverage is sought pursuant to this paragraph. Provided however,
42 that nothing in this paragraph shall require such chosen provider to be
43 participating in the patient's network or located within the state;
44 provided further that nothing herein shall obligate to cover cost
45 related to travel to the chosen provider.
46 (B) For the purposes of this paragraph, the following terms shall have
47 the following meanings:
48 (i) "Rare disease" shall have the same meaning as set forth in subdi-
49 vision seven-g of section forty-nine hundred of the public health law.
50 (ii) "Life-threatening condition or disease" shall have the same mean-
51 ing as set forth in subdivision seven-a of section forty-nine hundred of
52 the public health law.
53 (iii) "Degenerative and disabling condition" shall mean a condition or
54 disease which (a) requires specialized medical care over a prolonged
55 period of time, or (b) qualifies the patient as a disabled person, as
A. 9539 3
1 defined by subdivision five of section two hundred eight of the social
2 services law.
3 (iv) "Medically fragile child" shall have the same meaning as set
4 forth in subdivision nine of section forty-four hundred one of the
5 public health law.
6 § 3. Section 4303 of the insurance law is amended by adding a new
7 subsection (vv) to read as follows:
8 (vv) (1) Every policy which provides hospital, surgical, medical or
9 major medical coverage shall provide coverage for medically necessary
10 services from a chosen provider for a confirmed diagnosis that is deemed
11 to be a rare disease, life-threatening condition or disease, degenera-
12 tive and disabling condition, or involves a medically fragile child,
13 with no restriction to a plan network, if the following conditions are
14 met:
15 (A) (i) The costs of the chosen provider are equal to or less than the
16 average cost that would have otherwise been paid to a local network
17 provider who possesses a similar subspecialty as such chosen provider;
18 and
19 (ii) the patient's treating specialist or primary care provider
20 provides a written statement to recommend the chosen provider for the
21 particular disease.
22 (B) The chosen provider or the patient's primary care physician
23 provides advance notice to such patient's network plan prior to a
24 planned procedure covered pursuant to this subsection.
25 (C) The chosen provider is accredited or designated by the department
26 of health, the federal government, or a voluntary national health organ-
27 ization as having special expertise in treating, or has demonstrated a
28 clinical focus in the area of, the confirmed diagnosis for which cover-
29 age is sought pursuant to this subsection. Provided however, that noth-
30 ing in this subsection shall require such chosen provider to be partic-
31 ipating in the patient's network or located within the state; provided
32 further that nothing herein shall obligate to cover cost related to
33 travel to the chosen provider.
34 (2) For the purposes of this subsection, the following terms shall
35 have the following meanings:
36 (A) "Rare disease" shall have the same meaning as set forth in subdi-
37 vision seven-g of section forty-nine hundred of the public health law.
38 (B) "Life-threatening condition or disease" shall have the same mean-
39 ing as set forth in subdivision seven-a of section forty-nine hundred of
40 the public health law.
41 (C) "Degenerative and disabling condition" shall mean a condition or
42 disease which (i) requires specialized medical care over a prolonged
43 period of time, or (ii) qualifies the patient as a disabled person, as
44 defined by subdivision five of section two hundred eight of the social
45 services law.
46 (D) "Medically fragile child" shall have the same meaning as set forth
47 in subdivision nine of section forty-four hundred one of the public
48 health law.
49 § 4. The public health law is amended by adding a new section 4406-j
50 to read as follows:
51 § 4406-j. Extraordinary out-of-network coverage. No health maintenance
52 organization subject to this article shall, by contract, written policy,
53 or procedure, limit a patient enrollee's direct access to services from
54 a chosen provider for a rare disease, life-threatening condition or
55 disease, degenerative and disabling condition, or diagnosis involving a
56 medically fragile child if such services are covered pursuant to para-
A. 9539 4
1 graph thirty-nine of subsection (i) of section three thousand sixteen of
2 the insurance law, paragraph twenty-three of subsection (k) of section
3 three thousand two hundred twenty-one of the insurance law, or
4 subsection (vv) of section four thousand three hundred three of the
5 insurance law; provided, however, that such patient enrollee's access to
6 such services are otherwise subject to the terms and conditions of the
7 plan under which such patient enrollee is covered.
8 § 5. This act shall take effect on the ninetieth day after it shall
9 have become a law and shall apply to all insurance policies and
10 contracts issued, renewed, modified, altered, or amended on or after
11 such effective date.
