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

                                  5046

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                               May 7, 2013
                               ___________

Introduced  by  Sen.  HANNON -- read twice and ordered printed, and when
  printed to be committed to the Committee on Health

AN ACT to amend the public health law and  the  state  finance  law,  in
  relation to organ, eye and tissue donation

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

  Section 1. Section 4310 of the public health law, as amended by  chap-
ter  639  of the laws of 2006, the section heading as separately amended
by chapter 640 of the laws of 2006, subdivisions 1 and 3 as  amended  by
chapter  158 of the laws of 2012 and subdivision 2 as separately amended
by chapters 158 and 465 of the laws of  2012,  is  amended  to  read  as
follows:
  S  4310. New York state donate life registry for organ, EYE and tissue
donations. 1. LEGISLATIVE FINDINGS AND  INTENT.  THE  LEGISLATURE  FINDS
THAT  THERE  IS  A  NEED TO INCREASE THE NUMBER OF ORGAN, EYE AND TISSUE
DONORS TO SAVE AND IMPROVE LIVES IN THIS STATE. ONLY TWENTY  PERCENT  OF
ELIGIBLE  NEW  YORKERS ARE CURRENTLY IN THE DONATE LIFE REGISTRY TO MAKE
AN ANATOMICAL GIFT UPON THEIR DEATH, THE THIRD LOWEST DONOR  DESIGNATION
SHARE  IN  THE NATION, WHILE THE STATE OF NEW YORK HAS THE THIRD HIGHEST
NEED FOR ORGAN DONORS IN THE UNITED STATES AND ONE OF THE LONGEST  AVER-
AGE  WAITING  TIMES  FOR  KIDNEY TRANSPLANTS. A STATEWIDE ORGAN, EYE AND
TISSUE DONOR REGISTRY COUPLED WITH AN ENHANCED PROGRAM OF  PROMOTION  OF
SUCH  REGISTRY, WILL LEAD TO AN INCREASE IN THE NUMBER OF ORGAN, EYE AND
TISSUE DONORS REGISTERED IN THIS STATE, THEREBY AFFORDING  MORE  PERSONS
WHO  ARE AWAITING ORGAN, EYE OR TISSUE TRANSPLANTS THE OPPORTUNITY FOR A
FULL AND PRODUCTIVE LIFE.
  2. The department shall establish an  organ,  EYE,  and  tissue  donor
registry,  which  shall be called and be referred to as the "donate life
registry", WHICH SHALL PROVIDE A MEANS TO MAKE AND REGISTER  A  GIFT  OF
ORGANS,  EYES  AND TISSUES TO TAKE PLACE AFTER DEATH PURSUANT TO SECTION
FORTY-THREE HUNDRED ONE AND OTHER APPLICABLE PROVISIONS OF THIS ARTICLE.

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD10414-01-3
              

S. 5046                             2

[Such registry shall contain a listing of all donors who  have  declared
their consent to make an anatomical gift.
  2.]  THE  DEPARTMENT SHALL ENTER INTO A CONTRACT FOR THE OPERATION AND
PROMOTION OF SUCH REGISTRY WITH A NOT-FOR-PROFIT STATEWIDE  ORGANIZATION
THAT  HAS  EXPERIENCE  WORKING  WITH  ORGAN,  EYE AND TISSUE PROCUREMENT
ORGANIZATIONS, HAS EXPERTISE IN CONDUCTING ORGAN, EYE AND  TISSUE  DONOR
PROMOTIONAL  CAMPAIGNS, AND IS AFFILIATED WITH THE ORGAN, EYE AND TISSUE
DONATION COMMUNITY THROUGHOUT THE STATE. THE CONTRACTOR MAY  SUBCONTRACT
AS  NEEDED  FOR  THE  EFFECTIVE  PERFORMANCE  OF  THE CONTRACT. ALL SUCH
SUBCONTRACTORS SHALL BE SUBJECT  TO  APPROVAL  BY  THE  DEPARTMENT.  THE
DEPARTMENT,  THE  DEPARTMENT  OF  MOTOR  VEHICLES,  THE  STATE  BOARD OF
ELECTIONS AND ANY OTHER APPLICABLE STATE AGENCY SHALL COOPERATE  IN  THE
COLLECTION OF REGISTRANT DATA AND ENSURE SECURE TRANSFER OF THIS DATA TO
THE CONTRACTOR.
  3. THE DUTIES OF THE CONTRACTOR SHALL INCLUDE THE FOLLOWING:
  (A)  THE  DEVELOPMENT, IMPLEMENTATION AND MAINTENANCE OF AN ORGAN, EYE
AND TISSUE DONOR REGISTRY THAT MAY ALLOW FOR ONLINE,  MAILED  AND  OTHER
FORMS  OF ORGAN, EYE AND TISSUE DONOR REGISTRATION, VERIFICATION, AMEND-
MENT AND REVOCATION.
  (I) THE REGISTRY SHALL BE MAINTAINED IN A MANNER THAT ALLOWS IMMEDIATE
ACCESS TO ORGAN, EYE AND TISSUE DONATION  RECORDS  TWENTY-FOUR  HOURS  A
DAY,  SEVEN  DAYS  A  WEEK TO THE CONTRACTOR, FEDERALLY DESIGNATED ORGAN
PROCUREMENT ORGANIZATIONS, LICENSED EYE AND TISSUE BANKS, AND SUCH OTHER
ENTITIES WHICH MAY BE APPROVED BY THE DEPARTMENT FOR ACCESS.
  (II) ACCESS TO THE REGISTRY SHALL HAVE SECURITY MEASURES AS SET  FORTH
IN THE CONTRACT TO PROTECT THE INTEGRITY OF THE IDENTIFIABLE DATA IN THE
REGISTRY, WHICH MAY ONLY BE ACCESSED BY THE PARTIES DESCRIBED IN SUBPAR-
AGRAPH  (I)  OF  THIS PARAGRAPH AND ONLY FOR THE PURPOSES OF DETERMINING
DONOR STATUS AT OR NEAR THE TIME OF DEATH OF AN INDIVIDUAL, OR,  BY  THE
CONTRACTOR  ONLY  FOR  PURPOSES  OF  QUALITY ASSESSMENT AND IMPROVEMENT,
TECHNICAL SUPPORT AND DONOR SERVICE.
  (III) DE-IDENTIFIED INFORMATION MAY BE ACCESSED BY THE ENTITIES LISTED
IN SUBPARAGRAPH (I) OF THIS PARAGRAPH OR THEIR DESIGNEES FOR PURPOSES OF
ANALYSIS,  PROMOTION,  EDUCATION,  QUALITY  IMPROVEMENT  AND   TECHNICAL
SUPPORT; AND
  (B)  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
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 REGISTRY
INFORMATION;
  (III) THE ANNUAL DOLLAR AMOUNT OF VOLUNTARY CONTRIBUTIONS RECEIVED  BY
THE  CONTRACTOR  FOR  THE  PURPOSES  OF  MAINTAINING THE REGISTRY AND/OR
EDUCATIONAL AND PROMOTIONAL CAMPAIGNS AND INITIATIVES;
  (IV) A DESCRIPTION OF THE PROMOTIONAL CAMPAIGNS AND INITIATIVES IMPLE-
MENTED DURING THE YEAR; AND
  (V) ACCOUNTING STATEMENTS OF EXPENDITURES FOR THE  PURPOSES  OF  MAIN-
TAINING THE REGISTRY AND PROMOTIONAL CAMPAIGNS AND INITIATIVES.
  4.  PAYMENTS TO THE CONTRACTOR FOR THE OPERATION OF THE ORGAN, EYE AND
TISSUE DONOR REGISTRY SHALL BE PAID BY THE DEPARTMENT FROM FUNDS  AVAIL-
ABLE  FOR  THESE  PURPOSES,  INCLUDING 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,  WHICH ARE DESIGNATED FOR MAINTAINING AND OPERATING THE

S. 5046                             3

ORGAN, EYE AND TISSUE DONOR REGISTRY AND PROMOTION OF THE  REGISTRY,  AS
DEEMED  APPROPRIATE BY THE COMMISSIONER. IN ADDITION, THE CONTRACTOR MAY
RECEIVE AND USE VOLUNTARY CONTRIBUTIONS.
  5.  (A) Such ORGAN, EYE AND TISSUE registration [of consent to make an
anatomical gift] can be made through [(a)]: (I) indication made  on  the
application or renewal form of a DRIVER'S license, [(b)] (II) indication
made  on  a  non-driver identification card application or renewal form,
[(c)] (III) enrolling in the registry website maintained by the  depart-
ment,  [which may include using an electronic signature subject to arti-
cle three of the state technology law, (d)] (IV) indication  made  on  a
voter registration form pursuant to subdivision five of section 5-210 of
the election law, (V) ENROLLMENT THROUGH THE ORGAN, EYE AND TISSUE DONOR
REGISTRY  WEBSITE  MAINTAINED  BY  THE CONTRACTOR, (VI) PAPER ENROLLMENT
SUBMITTED TO THE CONTRACTOR, or [(e)] (VII)  through  any  other  method
identified  by the commissioner. Where required by law for consent forms
described in [paragraphs (a) and (b)] SUBPARAGRAPHS (I) AND (II) of this
[subdivision] PARAGRAPH, the commissioner shall  ensure  that  space  is
provided  on  any  consent  form so that the applicant shall register or
decline registration in the donate life  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  Donate  Life  Registry? Check box for 'yes' or 'skip this ques-
tion'."
  The commissioner shall not maintain records of any person  who  checks
"skip this question". Failure to check a box shall not impair the valid-
ity 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
donate  life  registry.  Where  an applicant has previously consented to
make an anatomical gift or  registered  in  the  donate  life  registry,
checking "skip this question" or failing to check a box shall not impair
that  consent  or  registration.  ENROLLMENT  THROUGH THE ORGAN, EYE AND
TISSUE DONOR REGISTRY WEBSITE MAINTAINED BY THE CONTRACTOR  THROUGH  ANY
OF  THE  MEANS  LISTED  ABOVE  MAY BE SIGNED BY ELECTRONIC SIGNATURE, IN
ACCORDANCE WITH THE PROVISIONS OF ARTICLE THREE OF THE STATE  TECHNOLOGY
LAW,  SUPPORTED BY ATTESTATION. The registration shall take effect [upon
the provision of] IMMEDIATELY AND written or electronic  notice  of  the
registration  SHALL  BE PROVIDED to the [person] INDIVIDUAL enrolling in
the registry.
  [3. (a) Information contained in the registry shall be  accessible  to
(i)  federally  designated organ procurement organizations, (ii) eye and
tissue  banks  licensed  by   the   department   pursuant   to   article
forty-three-B  of  this  chapter,  and  (iii)  any other entity formally
approved by the commissioner.
  (b) The information contained in the registry shall not be released to
any person except as expressly authorized by this section solely for the
purpose of identifying potential organ and tissue donors at or near  the
time of death.
  4.  If  the department had an established registry prior to the effec-
tive date of this section, it shall be deemed to meet  the  requirements
of this section.
  5.  The  registry  shall  provide  persons enrolled the opportunity to
specify which organs and tissues they want to donate and if the donation

S. 5046                             4

can be used for transplantation, research, or both.] (B) AMENDMENTS  MAY
BE MADE BY THE FOLLOWING:
  (I)  REGISTRANTS SUBMITTING AN AMENDMENT IN WRITING TO THE CONTRACTOR;
OR
  (II) REGISTRANTS SUBMITTING AN AMENDMENT  ELECTRONICALLY  THROUGH  THE
ORGAN,  EYE AND TISSUE DONOR REGISTRY WEBSITE MAINTAINED BY THE CONTRAC-
TOR.
  (C) REMOVAL FROM THE ORGAN, EYE AND TISSUE  DONOR  REGISTRY  SHALL  BE
ACCOMPLISHED  BY  PROVIDING NOTIFICATION TO THE CONTRACTOR. REMOVAL FROM
THE REGISTRY SHALL NOT BE DEEMED  A  REFUSAL  OF  ANY  OTHER  OR  FUTURE
ANATOMICAL GIFT.
  (D) THE REGISTRY SHALL PROVIDE INDIVIDUALS ENROLLED THE OPPORTUNITY TO
SPECIFY WHICH ORGANS AND TISSUES THEY WANT TO DONATE AND IF THE DONATION
MAY BE USED FOR TRANSPLANTATION, RESEARCH, OR BOTH.
  6.  [A  person]  AN  INDIVIDUAL  registered  in the [organ and tissue]
DONATE LIFE registry before [the effective  date  of  this  subdivision]
JULY  TWENTY-THIRD, TWO THOUSAND EIGHT shall be deemed to have expressed
[intent to donate, until and unless he or she files an amendment to  his
or her registration or a new registration expressing] consent to donate.
  7.  [The  commissioner shall contact each person registered before the
effective date of this subdivision in the organ and tissue  registry  in
writing  to inform him or her that at the time he or she registered, the
registry was that of intent and that the registry is now one of consent,
to explain in clear and  understandable  terms  the  difference  between
intent  and consent, and to provide opportunity for the person to change
his or her registration to  provide  consent  by  amending  his  or  her
current registration or executing a new registration.
  8.] The commissioner is authorized to promulgate rules and regulations
necessary to implement the provisions of this section.
  S  2.  Subdivision  2  of  section  4310  of the public health law, as
amended by chapter 158 of the laws  of  2012,  is  amended  to  read  as
follows:
  [2.]  5.  (A)  Such  ORGAN, EYE AND TISSUE registration [of consent to
make an anatomical gift] can be made through [(a)]: (I) indication  made
on  the  application  or  renewal form of a DRIVER'S license, [(b)] (II)
indication made on  a  non-driver  identification  card  application  or
renewal  form,  [(c)] (III) enrolling in the registry website maintained
by the department, [which may  include  using  an  electronic  signature
subject  to  article  three of the state technology law, (d)] (IV) indi-
cation made on a voter registration form pursuant to subdivision five of
section 5-210 of the election law, (V) ENROLLMENT THROUGH THE ORGAN, EYE
AND TISSUE DONOR REGISTRY WEBSITE MAINTAINED  BY  THE  CONTRACTOR,  (VI)
PAPER ENROLLMENT SUBMITTED TO THE CONTRACTOR, or [(e)] (VII) through any
other  method identified by the commissioner.  WHERE REQUIRED BY LAW FOR
CONSENT FORMS DESCRIBED IN SUBPARAGRAPHS (I) AND (II) OF THIS PARAGRAPH,
THE COMMISSIONER SHALL ENSURE THAT SPACE IS PROVIDED ON ANY CONSENT FORM
SO THAT THE APPLICANT SHALL REGISTER  OR  DECLINE  REGISTRATION  IN  THE
DONATE  LIFE  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 DONATE LIFE REGISTRY? CHECK BOX FOR 'YES'  OR  'SKIP  THIS  QUES-
TION'."
  THE  COMMISSIONER  SHALL NOT MAINTAIN RECORDS OF ANY PERSON WHO CHECKS
"SKIP THIS QUESTION". FAILURE TO CHECK A BOX SHALL NOT IMPAIR THE VALID-
ITY OF AN APPLICATION, AND FAILURE TO CHECK "YES" OR CHECKING "SKIP THIS

S. 5046                             5

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
DONATE  LIFE  REGISTRY.  WHERE  AN APPLICANT HAS PREVIOUSLY CONSENTED TO
MAKE AN ANATOMICAL GIFT OR  REGISTERED  IN  THE  DONATE  LIFE  REGISTRY,
CHECKING "SKIP THIS QUESTION" OR FAILING TO CHECK A BOX SHALL NOT IMPAIR
THAT  CONSENT  OR  REGISTRATION.  ENROLLMENT  THROUGH THE ORGAN, EYE AND
TISSUE DONOR REGISTRY WEBSITE MAINTAINED BY THE CONTRACTOR  THROUGH  ANY
OF  THE  MEANS  LISTED  ABOVE  MAY BE SIGNED BY ELECTRONIC SIGNATURE, IN
ACCORDANCE WITH THE PROVISIONS OF ARTICLE THREE OF THE STATE  TECHNOLOGY
LAW,  SUPPORTED BY ATTESTATION. The registration shall take effect [upon
the provision of] IMMEDIATELY AND written or electronic  notice  of  the
registration  SHALL  BE PROVIDED to the [person] INDIVIDUAL enrolling in
the registry.
  (B) AMENDMENTS CAN BE MADE BY THE FOLLOWING:
  (I) REGISTRANTS SUBMITTING AN AMENDMENT IN WRITING TO THE  CONTRACTOR;
OR
  (II)  REGISTRANTS  SUBMITTING  AN AMENDMENT ELECTRONICALLY THROUGH THE
ORGAN, EYE AND TISSUE DONOR REGISTRY WEBSITE MAINTAINED BY THE  CONTRAC-
TOR.
  (C)  REMOVAL  FROM  THE  ORGAN, EYE AND TISSUE DONOR REGISTRY SHALL BE
ACCOMPLISHED BY PROVIDING NOTIFICATION TO THE CONTRACTOR.  REMOVAL  FROM
THE  REGISTRY  SHALL  NOT  BE  DEEMED  A  REFUSAL OF ANY OTHER OR FUTURE
ANATOMICAL GIFT.
  (D) THE REGISTRY SHALL PROVIDE INDIVIDUALS ENROLLED THE OPPORTUNITY TO
SPECIFY WHICH ORGANS AND TISSUES THEY WANT TO DONATE AND IF THE DONATION
MAY BE USED FOR TRANSPLANTATION, RESEARCH, OR BOTH.
  S 3. Subdivision 3 of section 95-d of the state finance law, as  added
by chapter 415 of the laws of 2003, 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]  TO SUPPORT TO MAINTENANCE AND OPERATION OF
THE DONATE LIFE REGISTRY, IN ACCORDANCE WITH THE PROVISIONS  OF  SECTION
FORTY-THREE HUNDRED TEN OF THE PUBLIC HEALTH LAW.
  S  4.  This  act  shall take effect on the sixtieth day after it shall
have become a law; provided that the  amendments  to  subdivision  2  of
section  4310  of the public health law, made by section one of this act
shall take effect on the same date and in the same manner as chapter 465
of the laws of 2012 take effect, and the amendments made  thereto  shall
not  affect  the  expiration and reversion of such subdivision and shall
expire and be deemed repealed therewith, when upon such date section two
of this act shall take effect.