What's happening
This bill requires insurance plans to cover medically necessary out-of-network care for rare diseases, life-threatening conditions, degenerative or disabling conditions, or medically fragile children under certain conditions.
Why it matters
Expands patient choice for critical care. Patients with rare, life-threatening, degenerative, or disabling conditions—or medically fragile children—can access medically necessary out-of-network providers if certain conditions (cost, recommendation, notice, provider expertise) are met. This reduces barriers when local in-network specialists are unavailable or lack appropriate expertise.
Limits financial burden for insurers while protecting patients. Insurers are only required to cover out-of-network care if costs are not higher than what they would pay to a comparable in-network provider. This provision aims to protect insurers from excessive costs while ensuring patients aren’t penalized for needing specialized care.
Ensures provider quality and oversight. Out-of-network providers must be accredited or demonstrate clinical focus in the relevant diagnosis, safeguarding patients by requiring a high standard of care even when they go outside the network.
Does not cover travel expenses. While the bill increases access to specialized providers (even out-of-state), it explicitly does not require insurers to cover travel costs, meaning families may still face out-of-pocket expenses for transportation and lodging.
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Who cares
Headline styles
Cover Rare and Critical Illnesses
Plain English, a few words. Used as the page title.
Sponsors
History
- Referred to insurance
Companion bill
The same bill in the other chamber. A bill becomes law when one version passes both houses and the governor signs it, so either number can carry it.
Cover Rare Diseases Fully
Assembly Floor Calendar · Sponsor Simcha Eichenstein
Full text
4 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
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 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 Assembly, do enact as follows:
Section 1. Subsection (i) of section 3216 of the insurance law is amended by adding a new paragraph 40 to read as follows:
(40) (A) Every policy which provides hospital, surgical, medical or major medical coverage shall provide coverage for medically necessary services from a chosen provider for a confirmed diagnosis that is deemed to be a rare disease, life-threatening condition or disease, degenerative and disabling condition, or involves a medically fragile child, with no restriction to a plan network, if the following conditions are met:
(i) (A) The costs of the chosen provider are equal to or less than the average cost that would have otherwise been paid to a local network provider who possesses a similar subspecialty as such chosen provider; and
(B) the patient's treating specialist or primary care provider provides a written statement to recommend the chosen provider for the particular disease.
(ii) The chosen provider or the patient's primary care physician provides advance notice to such patient's network plan prior to a planned procedure covered pursuant to this paragraph.
(iii) The chosen provider is accredited or designated by the department 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
organization as having special expertise in treating, or has demonstrated a clinical focus in the area of, the confirmed diagnosis for which coverage is sought pursuant to this paragraph. Provided however, that nothing in this paragraph shall require such chosen provider to be participating in the patient's network or located within the state; provided further that nothing herein shall obligate to cover cost related to travel to the chosen provider.
(B) For the purposes of this paragraph, the following terms shall have the following meanings:
(i) "Rare disease" shall have the same meaning as set forth in subdivision seven-g of section forty-nine hundred of the public health law.
(ii) "Life-threatening condition or disease" shall have the same meaning as set forth in subdivision seven-a of section forty-nine hundred of the public health law.
(iii) "Degenerative and disabling condition" shall mean a condition or disease which (a) requires specialized medical care over a prolonged period of time, or (b) qualifies the patient as a disabled person, as defined by subdivision five of section two hundred eight of the social services law.
(iv) "Medically fragile child" shall have the same meaning as set forth in subdivision nine of section forty-four hundred one of the public health law.
§ 2. Subsection (k) of section 3221 of the insurance law is amended by adding a new paragraph 24 to read as follows:
(24) (A) Every policy which provides hospital, surgical, medical or major medical coverage shall provide coverage for medically necessary services from a chosen provider for a confirmed diagnosis that is deemed to be a rare disease, life-threatening condition or disease, degenerative and disabling condition, or involves a medically fragile child, with no restriction to a plan network, if the following conditions are met:
(i) (I) The costs of the chosen provider are equal to or less than the average cost that would have otherwise been paid to a local network provider who possesses a similar subspecialty as such chosen provider; and
(II) the patient's treating specialist or primary care provider provides a written statement to recommend the chosen provider for the particular disease.
(ii) The chosen provider or the patient's primary care physician provides advance notice to such patient's network plan prior to a planned procedure covered pursuant to this paragraph.
(iii) The chosen provider is accredited or designated by the department of health, the federal government, or a voluntary national health organization as having special expertise in treating, or has demonstrated a clinical focus in the area of, the confirmed diagnosis for which coverage is sought pursuant to this paragraph. Provided however, that nothing in this paragraph shall require such chosen provider to be participating in the patient's network or located within the state; provided further that nothing herein shall obligate to cover cost related to travel to the chosen provider.
(B) For the purposes of this paragraph, the following terms shall have the following meanings:
(i) "Rare disease" shall have the same meaning as set forth in subdivision seven-g of section forty-nine hundred of the public health law.
(ii) "Life-threatening condition or disease" shall have the same meaning as set forth in subdivision seven-a of section forty-nine hundred of the public health law.
(iii) "Degenerative and disabling condition" shall mean a condition or disease which (a) requires specialized medical care over a prolonged period of time, or (b) qualifies the patient as a disabled person, as defined by subdivision five of section two hundred eight of the social services law.
(iv) "Medically fragile child" shall have the same meaning as set forth in subdivision nine of section forty-four hundred one of the public health law.
§ 3. Section 4303 of the insurance law is amended by adding a new subsection (ww) to read as follows:
(ww) (1) Every policy which provides hospital, surgical, medical or major medical coverage shall provide coverage for medically necessary services from a chosen provider for a confirmed diagnosis that is deemed to be a rare disease, life-threatening condition or disease, degenerative and disabling condition, or involves a medically fragile child, with no restriction to a plan network, if the following conditions are met:
(A) (i) The costs of the chosen provider are equal to or less than the average cost that would have otherwise been paid to a local network provider who possesses a similar subspecialty as such chosen provider; and
(ii) the patient's treating specialist or primary care provider provides a written statement to recommend the chosen provider for the particular disease.
(B) The chosen provider or the patient's primary care physician provides advance notice to such patient's network plan prior to a planned procedure covered pursuant to this subsection.
(C) The chosen provider is accredited or designated by the department of health, the federal government, or a voluntary national health organization as having special expertise in treating, or has demonstrated a clinical focus in the area of, the confirmed diagnosis for which coverage is sought pursuant to this subsection. Provided however, that nothing in this subsection shall require such chosen provider to be participating in the patient's network or located within the state; provided further that nothing herein shall obligate to cover cost related to travel to the chosen provider.
(2) For the purposes of this subsection, the following terms shall have the following meanings:
(A) "Rare disease" shall have the same meaning as set forth in subdivision seven-g of section forty-nine hundred of the public health law.
(B) "Life-threatening condition or disease" shall have the same meaning as set forth in subdivision seven-a of section forty-nine hundred of the public health law.
(C) "Degenerative and disabling condition" shall mean a condition or disease which (i) requires specialized medical care over a prolonged period of time, or (ii) qualifies the patient as a disabled person, as defined by subdivision five of section two hundred eight of the social services law.
(D) "Medically fragile child" shall have the same meaning as set forth in subdivision nine of section forty-four hundred one of the public health law.
§ 4. The public health law is amended by adding a new section 4406-j to read as follows:
§ 4406-j. Extraordinary out-of-network coverage. No health maintenance organization subject to this article shall, by contract, written policy, or procedure, limit a patient enrollee's direct access to services from a chosen provider for a rare disease, life-threatening condition or disease, degenerative and disabling condition, or diagnosis involving a medically fragile child if such services are covered pursuant to paragraph forty of subsection (i) of section three thousand sixteen of the insurance law, paragraph twenty-four of subsection (k) of section three thousand two hundred twenty-one of the insurance law, or subsection (ww) of section four thousand three hundred three of the insurance law; provided, however, that such patient enrollee's access to such services are otherwise subject to the terms and conditions of the plan under which such patient enrollee is covered.
§ 5. This act shall take effect on the ninetieth day after it shall have become a law and shall apply to all insurance policies and contracts issued, renewed, modified, altered, or amended on or after such effective date.
Reflowed for reading: line numbers and page breaks removed. Cite the official text.
Sponsor's memo
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 specific provisions
Sections one through three amend various sec4tions of the insurance law to require insurance coverage for above referenced conditions by out of network providers if (i) costs are equal to 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 diagnoses 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.
Fiscal implications
None.
Prior legislative history
S.8957 of 2023-2024 (Hoylman-Sigal): Died in Insurance
A.9539 of 2023-2024 (Eichenstein): Third reading
Effective date
Ninety days after it shall have become law.
Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.