S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                    965
 
                        2025-2026 Regular Sessions
 
                             I N  S E N A T E
 
                                (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:
 
   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, DEGENERA-
 TIVE 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  DEPART-
 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
 
 ORGANIZATION AS HAVING SPECIAL EXPERTISE  IN  TREATING,  OR  HAS  DEMON-
 STRATED  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  SUBDI-
 VISION SEVEN-G OF SECTION FORTY-NINE HUNDRED OF THE PUBLIC HEALTH LAW.
   (II) "LIFE-THREATENING CONDITION OR DISEASE" SHALL HAVE THE SAME MEAN-
 ING 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,  DEGENERA-
 TIVE  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 DEPART-
 MENT OF HEALTH, THE FEDERAL GOVERNMENT, OR A VOLUNTARY  NATIONAL  HEALTH
 ORGANIZATION  AS  HAVING  SPECIAL  EXPERTISE  IN TREATING, OR HAS DEMON-
 STRATED 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 SUBDI-
 VISION SEVEN-G OF SECTION FORTY-NINE HUNDRED OF THE PUBLIC HEALTH LAW.
 S. 965                              3
 
   (II) "LIFE-THREATENING CONDITION OR DISEASE" SHALL HAVE THE SAME MEAN-
 ING 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, DEGENERA-
 TIVE 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 ORGAN-
 IZATION  AS  HAVING SPECIAL EXPERTISE IN TREATING, OR HAS DEMONSTRATED A
 CLINICAL FOCUS IN THE AREA OF, THE CONFIRMED DIAGNOSIS FOR WHICH  COVER-
 AGE IS SOUGHT PURSUANT TO THIS SUBSECTION.  PROVIDED HOWEVER, THAT NOTH-
 ING  IN THIS SUBSECTION SHALL REQUIRE SUCH CHOSEN PROVIDER TO BE PARTIC-
 IPATING 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 SUBDI-
 VISION SEVEN-G OF SECTION FORTY-NINE HUNDRED OF THE PUBLIC HEALTH LAW.
   (B) "LIFE-THREATENING CONDITION OR DISEASE" SHALL HAVE THE SAME  MEAN-
 ING 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:
 S. 965                              4
 
   § 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  PARA-
 GRAPH  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.