Senate Bill S5917A

                            
                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                 5917--A

                       2015-2016 Regular Sessions

                            I N  S E N A T E

                              June 11, 2015
                               ___________

Introduced  by Sens. SAVINO, CARLUCCI -- read twice and ordered printed,
  and when printed to be committed to the Committee on Rules  --  recom-
  mitted  to  the  Committee on Health in accordance with Senate Rule 6,
  sec. 8 -- committee discharged, bill  amended,  ordered  reprinted  as
  amended and recommitted to said committee

AN  ACT  to  amend  the public health law, the state finance law and the
  election law, in relation to providing for the  creation  and  dissem-
  ination  of information pertaining to bone marrow and peripheral blood
  stem cell donation and bone marrow  and  peripheral  blood  stem  cell
  donation registration

  THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
BLY, DO ENACT AS FOLLOWS:

  Section 1. This act shall be known and may be cited as "Jaden's law".
  S 2. Subdivision 1 of section 207 of the public health law is  amended
by adding a new paragraph (m) to read as follows:
  (M) BONE MARROW AND PERIPHERAL BLOOD STEM CELL DONATION.
  S  3. The public health law is amended by adding a new section 4369 to
read as follows:
  S 4369. BONE MARROW AND PERIPHERAL BLOOD STEM CELL INFORMATION.  1.  A
PHYSICIAN,  AS  EARLY  AS  PRACTICABLE  IN  THE  PHYSICIAN'S THERAPEUTIC
RELATIONSHIP  WITH  A  PATIENT,  AND  UNLESS  THE  PHYSICIAN  REASONABLY
BELIEVES  THAT BONE MARROW OR PBSC DONATION WOULD THREATEN THE HEALTH OF
THE PATIENT, MAY PROVIDE A COPY OF THE BROCHURE PREPARED BY THE  COMMIS-
SIONER TO EVERY PATIENT:
  (A) WHO IS KNOWN BY THE PHYSICIAN TO BE AT LEAST EIGHTEEN YEARS OF AGE
BUT NO OLDER THAN SIXTY YEARS OF AGE; AND
  (B)  WHO  THE PHYSICIAN ANTICIPATES WILL BE ADMITTED TO A HOSPITAL FOR
AN ELECTIVE ORTHOPEDIC PROCEDURE OR TREATMENT OR OTHERWISE  BELIEVES  IS
AN  APPROPRIATE  CANDIDATE FOR BONE MARROW OR PBSC DONATION; OR FOR WHOM
THE PHYSICIAN OTHERWISE BELIEVES BONE MARROW OR PBSC DONATION IS  APPRO-

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD05503-05-6

              

S. 5917--A                          2

PRIATE  TO  THE  PATIENT'S  MEDICAL  CIRCUMSTANCES  OR IS DESIRED BY THE
PATIENT.
  2. THE PHYSICIAN MAY OFFER TO DISCUSS THE INFORMATION CONTAINED IN THE
BROCHURE WITH THE PATIENT OR THE PATIENT'S REPRESENTATIVE.
  3.  THIS SECTION SHALL NOT BE CONSTRUED TO APPLY TO A PHYSICIAN WHO IS
DIRECTLY AFFILIATED WITH A RELIGIOUS DENOMINATION THAT  ADHERES  TO  THE
TENET THAT BONE MARROW OR PBSC TRANSFER IS CONTRARY TO THE MORAL PRINCI-
PLES  WHICH  THE  DENOMINATION  CONSIDERS TO BE AN ESSENTIAL PART OF ITS
BELIEFS AND PRACTICES.
  S 4.  The public health law is amended by adding a new section 4311 to
read as follows:
  S 4311. NEW YORK STATE BONE MARROW  AND  PERIPHERAL  BLOOD  STEM  CELL
DONATION  REGISTRY.  1. THE DEPARTMENT SHALL ESTABLISH A BONE MARROW AND
PERIPHERAL BLOOD STEM CELL (PBSC) DONATION REGISTRY, TO BE KNOWN AS  THE
"PBSC REGISTRY", WHICH SHALL PROVIDE A MEANS TO MAKE AND REGISTER A GIFT
OF BONE MARROW AND PERIPHERAL BLOOD STEM CELLS TO TAKE PLACE PURSUANT TO
THE  PROVISIONS OF THIS ARTICLE. THE PBSC REGISTRY SHALL CONTAIN A LIST-
ING OF ALL DONORS WHO HAVE DECLARED THEIR CONSENT TO MAKE  SUCH  ANATOM-
ICAL GIFTS.
  2. THE COMMISSIONER MAY ENTER INTO A MULTI-YEAR CONTRACT FOR THE OPER-
ATION  AND  PROMOTION  OF  THE  PBSC REGISTRY, SUBJECT TO SUCH TERMS AND
CONDITIONS AS MAY BE CONTAINED WITHIN SUCH CONTRACT WITH A  NOT-FOR-PRO-
FIT  ORGANIZATION  THAT HAS EXPERIENCE WORKING WITH DONATION COMMUNITIES
THROUGHOUT THE STATE. THE CONTRACTOR MAY SUBCONTRACT AS NEEDED  FOR  THE
EFFECTIVE  PERFORMANCE OF THE CONTRACT.  ALL SUCH SUBCONTRACTORS AND THE
TERMS OF SUCH SUBCONTRACTS SHALL BE SUBJECT TO APPROVAL BY  THE  COMMIS-
SIONER.  ANY APPLICABLE STATE AGENCY, INCLUDING, BUT NOT LIMITED TO, THE
DEPARTMENT, THE DEPARTMENT OF MOTOR VEHICLES AND THE BOARD OF ELECTIONS,
SHALL COOPERATE IN THE COLLECTION AND TRANSFER OF REGISTRANT DATA TO THE
PBSC REGISTRY.
  3. THE DUTIES OF THE CONTRACTOR SHALL INCLUDE, BUT NOT BE LIMITED  TO,
THE FOLLOWING:
  (A) THE DEVELOPMENT, IMPLEMENTATION AND MAINTENANCE OF THE PBSC REGIS-
TRY  THAT  INCLUDES  ONLINE,  MAILED  AND OTHER FORMS OF BONE MARROW AND
PERIPHERAL BLOOD STEM CELL DONOR REGISTRATION,  VERIFICATION,  AMENDMENT
AND REVOCATION;
  (B)  PREPARATION AND SUBMISSION OF A PLAN TO ENCOURAGE BONE MARROW AND
PERIPHERAL BLOOD STEM CELL  DONATION  THROUGH  EDUCATION  AND  MARKETING
EFFORTS  AND OTHER RECOMMENDATIONS THAT WOULD STREAMLINE AND ENHANCE THE
COST-EFFECTIVE OPERATION OF THE PBSC REGISTRY;
  (C) PROVISION OF WRITTEN OR ELECTRONIC NOTIFICATION OF REGISTRATION IN
THE PBSC REGISTRY TO AN INDIVIDUAL ENROLLING IN THE PBSC REGISTRY; AND
  (D) PREPARATION AND SUBMISSION OF AN  ANNUAL  WRITTEN  REPORT  TO  THE
DEPARTMENT.  SUCH REPORT SHALL INCLUDE:
  (I)  A  PERFORMANCE  MATRIX INCLUDING THE NUMBER OF REGISTRANTS ON THE
PBSC REGISTRY AND AN ANALYSIS OF THE REGISTRATION RATES,  INCLUDING  BUT
NOT LIMITED TO, LOCATION, METHOD OF REGISTRATION, DEMOGRAPHIC, AND STATE
COMPARISONS;
  (II)  THE  CHARACTERISTICS  OF REGISTRANTS AS DETERMINED FROM THE PBSC
REGISTRY INFORMATION;
  (III) THE ANNUAL DOLLAR AMOUNT OF VOLUNTARY CONTRIBUTIONS RECEIVED  BY
THE  CONTRACTOR FOR THE PURPOSES OF MAINTAINING THE PBSC REGISTRY AND/OR
EDUCATIONAL AND PROMOTIONAL CAMPAIGNS AND INITIATIVES;
  (IV) A DESCRIPTION OF THE PROMOTIONAL CAMPAIGNS AND INITIATIVES IMPLE-
MENTED DURING THE YEAR; AND

S. 5917--A                          3

  (V) ACCOUNTING STATEMENTS OF EXPENDITURES FOR THE  PURPOSES  OF  MAIN-
TAINING THE PBSC REGISTRY AND PROMOTIONAL CAMPAIGNS AND INITIATIVES.
  4.  (A)  FOR  THE  PERIOD  APRIL FIRST, TWO THOUSAND SEVENTEEN THROUGH
MARCH THIRTY-FIRST, TWO THOUSAND EIGHTEEN, PAYMENTS  TO  THE  CONTRACTOR
SHALL BE PAID BY THE DEPARTMENT.
  (B)  FOR  THE  PERIOD BEGINNING APRIL FIRST, TWO THOUSAND EIGHTEEN AND
THEREAFTER, PAYMENTS TO THE CONTRACTOR SHALL BE PAID BY  THE  DEPARTMENT
FROM  FUNDS AVAILABLE FOR THESE PURPOSES, INCLUDING, BUT NOT LIMITED TO,
THE FUNDS DEPOSITED INTO THE LIFE PASS IT  ON  TRUST  FUND  PURSUANT  TO
SECTION NINETY-FIVE-D OF THE STATE FINANCE LAW, AS ADDED BY CHAPTER FOUR
HUNDRED FIFTEEN OF THE LAWS OF TWO THOUSAND THREE.
  (C) IN ADDITION, THE CONTRACTOR MAY RECEIVE AND USE VOLUNTARY CONTRIB-
UTIONS.
  5. (A) SUCH BONE MARROW AND PERIPHERAL BLOOD STEM CELL REGISTRATION OF
CONSENT  TO  MAKE AN ANATOMICAL GIFT CAN BE MADE THROUGH: (I) INDICATION
MADE ON THE APPLICATION OR RENEWAL FORM  OF  A  DRIVER'S  LICENSE,  (II)
INDICATION  MADE  ON  A  NON-DRIVER  IDENTIFICATION  CARD APPLICATION OR
RENEWAL FORM, (III) INDICATION MADE ON A VOTER REGISTRATION FORM  PURSU-
ANT  TO  SUBDIVISION  FIVE  OF  SECTION  5-210 OF THE ELECTION LAW, (IV)
ENROLLMENT THROUGH THE  PBSC  REGISTRY  WEBSITE,  (V)  PAPER  ENROLLMENT
SUBMITTED TO THE PBSC REGISTRY, OR (VI) THROUGH ANY OTHER METHOD IDENTI-
FIED BY THE COMMISSIONER.
  (B)(I)  WHERE  REQUIRED  BY  LAW  FOR  REGISTRATION FORMS DESCRIBED IN
SUBPARAGRAPHS (I) AND (II) OF PARAGRAPH (A)  OF  THIS  SUBDIVISION,  THE
COMMISSIONER  OF  MOTOR  VEHICLES SHALL ENSURE THAT SPACE IS PROVIDED ON
ANY REGISTRATION FORM SO THAT THE APPLICANT SHALL  REGISTER  OR  DECLINE
REGISTRATION  IN  THE  PBSC REGISTRY FOR ORGAN, EYE AND TISSUE DONATIONS
UNDER THIS SECTION AND THAT THE FOLLOWING IS STATED ON THE FORM IN CLEAR
AND CONSPICUOUS TYPE:
  "YOU MUST FILL OUT THE FOLLOWING SECTION: WOULD YOU LIKE TO  BE  ADDED
TO  THE  NEW  YORK  STATE  BONE  MARROW  AND  PERIPHERAL BLOOD STEM CELL
DONATION REGISTRY? CHECK BOX FOR 'YES' OR 'SKIP THIS QUESTION'."
  (II) THE COMMISSIONER SHALL NOT MAINTAIN RECORDS  OF  ANY  PERSON  WHO
CHECKS "SKIP THIS QUESTION". FAILURE TO CHECK A BOX SHALL NOT IMPAIR THE
VALIDITY OF AN APPLICATION, AND FAILURE TO CHECK "YES" OR CHECKING "SKIP
THIS  QUESTION" SHALL NOT BE CONSTRUED TO IMPLY A WISH NOT TO DONATE. IN
THE CASE OF AN APPLICANT UNDER EIGHTEEN YEARS  OF  AGE,  CHECKING  "YES"
SHALL  NOT CONSTITUTE CONSENT TO MAKE AN ANATOMICAL GIFT OR REGISTRATION
IN THE PBSC REGISTRY.  WHERE AN APPLICANT HAS  PREVIOUSLY  CONSENTED  TO
MAKE A BONE MARROW AND PERIPHERAL BLOOD STEM CELLS GIFT OR REGISTERED IN
THE  PBSC  REGISTRY, CHECKING "SKIP THIS QUESTION" OR FAILING TO CHECK A
BOX SHALL NOT IMPAIR THAT CONSENT OR REGISTRATION.
  (C) ENROLLMENT OR AMENDMENT OR REVOCATION THROUGH  THE  PBSC  REGISTRY
WEBSITE  THROUGH  ANY  OF  THE  MEANS  LISTED IN THIS SUBDIVISION MAY BE
SIGNED BY ELECTRONIC SIGNATURE, IN ACCORDANCE  WITH  THE  PROVISIONS  OF
ARTICLE THREE OF THE STATE TECHNOLOGY LAW, SUPPORTED BY THE USE OF SUIT-
ABLE  MECHANISMS  INCLUDING  UNIQUE IDENTIFIERS TO PROVIDE CONFIDENCE IN
THE IDENTITY OF THE  PERSON  PROVIDING  THE  ELECTRONIC  SIGNATURE.  THE
REGISTRATION  SHALL  TAKE  EFFECT UPON THE PROVISION OF WRITTEN OR ELEC-
TRONIC NOTICE OF THE REGISTRATION TO THE  INDIVIDUAL  ENROLLING  IN  THE
PBSC REGISTRY.
  (D)  AMENDMENTS OR REVOCATIONS FROM THE PBSC REGISTRY SHALL BE MADE BY
THE FOLLOWING, SUBJECT TO THE REQUIREMENTS OF THE COMMISSIONER:
  (I) REGISTRANTS SUBMITTING AN AMENDMENT OR REVOCATION  IN  WRITING  TO
THE PBSC REGISTRY; OR

S. 5917--A                          4

  (II)  REGISTRANTS SUBMITTING AN AMENDMENT OR REVOCATION ELECTRONICALLY
THROUGH THE PBSC REGISTRY WEBSITE.
  (E)  REMOVAL  FROM  THE PBSC REGISTRY SHALL NOT BE DEEMED A REFUSAL OF
ANY OTHER OR FUTURE BONE MARROW AND PERIPHERAL BLOOD STEM CELLS GIFT  OR
ANATOMICAL GIFT.
  (F)  THE PBSC REGISTRY SHALL PROVIDE AN ENROLLED INDIVIDUAL THE OPPOR-
TUNITY TO SPECIFY WHETHER HE  OR  SHE  WISHES  TO  DONATE  BONE  MARROW,
PERIPHERAL  BLOOD STEM CELLS OR BOTH AND IF THE DONATION MAY BE USED FOR
TRANSPLANTATION, RESEARCH, OR BOTH.
  6. (A) THE PBSC REGISTRY SHALL BE MAINTAINED IN A MANNER  THAT  ALLOWS
IMMEDIATE  ACCESS TO BONE MARROW AND PERIPHERAL BLOOD STEM CELL DONATION
RECORDS TWENTY-FOUR HOURS A DAY, SEVEN DAYS A WEEK  TO  THE  CONTRACTOR,
THE  DEPARTMENT,  FEDERALLY  DESIGNATED BONE MARROW AND PERIPHERAL BLOOD
STEM CELLS PROCUREMENT ORGANIZATIONS IN APPROPRIATE CASES AND SUCH OTHER
ENTITIES WHICH MAY BE APPROVED BY  THE  DEPARTMENT  FOR  ACCESS.  ACCESS
SHALL  BE  AVAILABLE TO REGISTRANTS TO CONFIRM THE ACCURACY AND VALIDITY
OF THEIR REGISTRATION AND TO AMEND OR REVOKE THEIR REGISTRATION, SUBJECT
TO REASONABLE PROCEDURES TO VERIFY IDENTITY.
  (B) ACCESS TO THE PBSC REGISTRY SHALL HAVE SECURITY MEASURES SET FORTH
IN THE CONTRACT TO PROTECT THE INTEGRITY OF THE IDENTIFIABLE DATA IN THE
PBSC REGISTRY, WHICH MAY ONLY BE ACCESSED BY THE  PARTIES  DESCRIBED  IN
PARAGRAPH (A) OF THIS SUBDIVISION AND ONLY FOR THE PURPOSES OF DETERMIN-
ING  DONOR  STATUS  OR  IDENTIFYING  POTENTIAL BONE MARROW OR PERIPHERAL
BLOOD STEM CELL DONORS, BY  THE  DEPARTMENT  FOR  ANY  PURPOSE,  BY  THE
CONTRACTOR  ONLY  FOR  PURPOSES  OF  QUALITY ASSESSMENT AND IMPROVEMENT,
TECHNICAL SUPPORT AND DONOR SERVICES, OR BY INDIVIDUAL  REGISTRANTS  FOR
THE  PURPOSES OF CONFIRMING THE ACCURACY AND VALIDITY OF THEIR REGISTRA-
TION OR MAKING, AMENDING OR REVOKING THEIR REGISTRATION.
  (C) DE-IDENTIFIED INFORMATION MAY BE ACCESSED BY THE  ENTITIES  LISTED
IN  PARAGRAPH (A) OF THIS SUBDIVISION OR THEIR DESIGNEES FOR PURPOSES OF
ANALYSIS,  PROMOTION,  EDUCATION,  QUALITY  IMPROVEMENT  AND   TECHNICAL
SUPPORT  FOR THE PBSC REGISTRY.  THE INFORMATION CONTAINED IN THE REGIS-
TRY SHALL NOT BE RELEASED TO ANY PERSON EXCEPT AS  EXPRESSLY  AUTHORIZED
BY THIS SECTION, SOLELY FOR THE PURPOSES SO AUTHORIZED.
  7.  THE  REGISTRATION  OF  BONE  MARROW  OR PERIPHERAL BLOOD STEM CELL
DONORS SHALL BE FOR THE PURPOSE OF IDENTIFYING  THE  DONORS  AND  TRANS-
FERRING  THEIR  REGISTRATION  INFORMATION  TO A FEDERALLY-REGULATED BONE
MARROW OR PERIPHERAL BLOOD STEM CELL PROCUREMENT AGENCY.
  8. THE COMMISSIONER IS AUTHORIZED TO PROMULGATE RULES AND  REGULATIONS
NECESSARY TO IMPLEMENT THE PROVISIONS OF THIS SECTION.
  9.  AN  INTERAGENCY  WORK  GROUP,  COMPOSED  OF  THE COMMISSIONER, THE
COMMISSIONER OF THE DEPARTMENT OF MOTOR VEHICLES, A CHAIR OF  THE  BOARD
OF  ELECTIONS,  OR THEIR DESIGNEES, AND SUCH OTHER INDIVIDUALS AS MAY BE
DESIGNATED BY THE COMMISSIONER, SHALL BE ESTABLISHED TO  MEET  WITH  THE
CONTRACTOR  ANNUALLY  AND  AS  NEEDED  TO  REVIEW THE STATUS OF THE PBSC
REGISTRY, TO EXAMINE THE STEPS THAT MIGHT BE TAKEN BY STATE AGENCIES  TO
ENHANCE ITS PERFORMANCE AND TO MAKE RECOMMENDATIONS TO THE CONTRACTOR.
  S  5.  Subdivision  3  of  section  95-d  of the state finance law, as
amended by section 29 of part A of chapter 60 of the laws  of  2014,  is
amended to read as follows:
  3.  Monies  of  the  fund  shall be expended only for organ transplant
research and education projects approved by the commissioner of  health,
or  to provide grants to not-for-profit corporations in this state which
are incorporated for the purpose of increasing and promoting  organ  and
tissue donation awareness AND BONE MARROW AND PERIPHERAL BLOOD STEM CELL
DONATION  AWARENESS  provided, however, THAT: (A) beginning April first,

S. 5917--A                          5

two thousand fifteen, any revenues received or any monies  appropriated,
credited or transferred to the fund on and after May first, two thousand
fourteen  may  also be expended to support the maintenance and operation
of the donate life registry in accordance with the provisions of section
forty-three  hundred  ten  of  the  public health law; AND (B) BEGINNING
APRIL FIRST, TWO THOUSAND SEVENTEEN, ANY REVENUES RECEIVED OR ANY MONIES
APPROPRIATED, CREDITED OR TRANSFERRED TO  THE  FUND  ON  AND  AFTER  MAY
FIRST,  TWO THOUSAND SIXTEEN MAY ALSO BE EXPENDED TO SUPPORT THE MAINTE-
NANCE AND OPERATION OF THE THE PBSC  REGISTRY  IN  ACCORDANCE  WITH  THE
PROVISIONS  OF  SECTION  FORTY-THREE HUNDRED ELEVEN OF THE PUBLIC HEALTH
LAW.
  S 6. Paragraph (k) of subdivision 5 of section 5-210 of  the  election
law is amended by adding a new subparagraph (xiii) to read as follows:
  (XIII)  A  SPACE  FOR  THE APPLICANT TO REGISTER IN THE NEW YORK STATE
BONE MARROW AND PERIPHERAL BLOOD STEM CELL DONATION REGISTRY ESTABLISHED
PURSUANT TO SECTION FORTY-THREE HUNDRED ELEVEN OF THE PUBLIC HEALTH LAW.
  S 7. This act shall take effect on the ninetieth day  after  it  shall
have become a law.