STATE OF NEW YORK ________________________________________________________________________ 965 2025-2026 Regular Sessions IN SENATE (Prefiled) January 8, 2025 ___________ Introduced by Sens. HOYLMAN-SIGAL, SALAZAR -- read twice and ordered printed, and when printed to be committed to the Committee on Insur- ance 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 40 to read as follows: 3 (40) (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 EXPLANATION--Matter in italics (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD02918-01-5
S. 965 2 1 organization as having special expertise in treating, or has demon- 2 strated a clinical focus in the area of, the confirmed diagnosis for 3 which coverage is sought pursuant to this paragraph. Provided however, 4 that nothing in this paragraph shall require such chosen provider to be 5 participating in the patient's network or located within the state; 6 provided further that nothing herein shall obligate to cover cost 7 related to travel to the chosen provider. 8 (B) For the purposes of this paragraph, the following terms shall have 9 the following meanings: 10 (i) "Rare disease" shall have the same meaning as set forth in subdi- 11 vision seven-g of section forty-nine hundred of the public health law. 12 (ii) "Life-threatening condition or disease" shall have the same mean- 13 ing as set forth in subdivision seven-a of section forty-nine hundred of 14 the public health law. 15 (iii) "Degenerative and disabling condition" shall mean a condition or 16 disease which (a) requires specialized medical care over a prolonged 17 period of time, or (b) qualifies the patient as a disabled person, as 18 defined by subdivision five of section two hundred eight of the social 19 services law. 20 (iv) "Medically fragile child" shall have the same meaning as set 21 forth in subdivision nine of section forty-four hundred one of the 22 public health law. 23 § 2. Subsection (k) of section 3221 of the insurance law is amended by 24 adding a new paragraph 24 to read as follows: 25 (24) (A) Every policy which provides hospital, surgical, medical or 26 major medical coverage shall provide coverage for medically necessary 27 services from a chosen provider for a confirmed diagnosis that is deemed 28 to be a rare disease, life-threatening condition or disease, degenera- 29 tive and disabling condition, or involves a medically fragile child, 30 with no restriction to a plan network, if the following conditions are 31 met: 32 (i) (I) The costs of the chosen provider are equal to or less than the 33 average cost that would have otherwise been paid to a local network 34 provider who possesses a similar subspecialty as such chosen provider; 35 and 36 (II) the patient's treating specialist or primary care provider 37 provides a written statement to recommend the chosen provider for the 38 particular disease. 39 (ii) The chosen provider or the patient's primary care physician 40 provides advance notice to such patient's network plan prior to a 41 planned procedure covered pursuant to this paragraph. 42 (iii) The chosen provider is accredited or designated by the depart- 43 ment of health, the federal government, or a voluntary national health 44 organization as having special expertise in treating, or has demon- 45 strated a clinical focus in the area of, the confirmed diagnosis for 46 which coverage is sought pursuant to this paragraph. Provided however, 47 that nothing in this paragraph shall require such chosen provider to be 48 participating in the patient's network or located within the state; 49 provided further that nothing herein shall obligate to cover cost 50 related to travel to the chosen provider. 51 (B) For the purposes of this paragraph, the following terms shall have 52 the following meanings: 53 (i) "Rare disease" shall have the same meaning as set forth in subdi- 54 vision seven-g of section forty-nine hundred of the public health law.
S. 965 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 (ww) to read as follows: 14 (ww) (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:
S. 965 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 of subsection (i) of section three thousand sixteen of the 8 insurance law, paragraph twenty-four of subsection (k) of section three 9 thousand two hundred twenty-one of the insurance law, or subsection (ww) 10 of section four thousand three hundred three of the insurance law; 11 provided, however, that such patient enrollee's access to such services 12 are otherwise subject to the terms and conditions of the plan under 13 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.