Bill S5046A-2013

Provides for the operation of the donate life registry for organ, eye and tissue donation by a not-for-profit organization

Provides for the operation of the donate life registry for organ, eye and tissue donation by a not-for-profit organization; requires all moneys in the life pass it on trust fund to be used for the operation and maintenance of such registry.

Details

Actions

  • Jan 8, 2014: REFERRED TO HEALTH
  • Jan 8, 2014: returned to senate
  • Jan 8, 2014: died in assembly
  • Jun 20, 2013: referred to codes
  • Jun 20, 2013: DELIVERED TO ASSEMBLY
  • Jun 20, 2013: PASSED SENATE
  • Jun 20, 2013: ORDERED TO THIRD READING CAL.1492
  • Jun 20, 2013: COMMITTEE DISCHARGED AND COMMITTED TO RULES
  • Jun 17, 2013: PRINT NUMBER 5046A
  • Jun 17, 2013: AMEND AND RECOMMIT TO FINANCE
  • Jun 10, 2013: REPORTED AND COMMITTED TO FINANCE
  • May 7, 2013: REFERRED TO HEALTH

Votes

Memo

BILL NUMBER:S5046A

TITLE OF BILL: An act to amend the public health law and the state finance law, in relation to organ, eye and tissue donation

PURPOSE: This bill provides for the operation of the donate life registry for organ, eye, and tissue donation by a not-for-profit organization.

SUMMARY OF PROVISIONS: Section 1 is the legislative intent.

The bill amends section 4310 of the public health law to include the word "eye" the New York state donate life registry. The bill authorizes the operation of the organ, eye, and tissue donation registry by a not-for-profit contractor, and makes various technical changes to the registry law.

The bill clarifies the provision for use of an electronic signature.

The bill amends subdivision 3 of section 95-d of the state finance law by eliminating language that limits expenditures from the Life Pass It On fund to organ transplant research and education projects approved by the commissioner of health, or grants provided to not-for-profit corporations that promote organ and tissue donation awareness.

Section 5 of the bill is the effective date.

JUSTIFICATION: New York State currently ranks 48th in donor designation share (percent- age of eligible population enrolled in the Registry) in the nation, with only 20% of its population enrolled in the New York State Donate Life Registry, while it has the third highest need for transplantable organs. Under the current model, one New Yorker dies every 13 hours while waiting for a transplant.

This legislation proposes that New York State increase enrollment in the Donate Life Registry by following the example of states with the highest donor designation share. Eight of the top ten states, all of which have a share of over 60%, have turned over the operation and promotion of their registries to not-for-profit organizations. Many other large and complex states, like California, Texas, Illinois. and Florida, have also taken the step of enlisting a not-for-profit organization to operate the registry. By contracting with a statewide not-for-profit organization, with a mission dedicated to saving lives through organ, eye and tissue donation, New York State can increase enrollment by streamlining the registration process and creating new avenues for promotion.

LEGISLATIVE HISTORY: New bill.

FISCAL IMPLICATIONS: None.

EFFECTIVE DATE: This act shall take effect on the sixtieth day after it shall become law.


Text

STATE OF NEW YORK ________________________________________________________________________ 5046--A 2013-2014 Regular Sessions IN SENATE May 7, 2013 ___________
Introduced by Sens. HANNON, CARLUCCI, LARKIN -- read twice and ordered printed, and when printed to be committed to the Committee on Health -- reported favorably from said committee and committed to the Commit- tee on Finance -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee 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. Legislative findings and intent. It is the intent of the legislature to enable the New York State donate life registry for organ, eye and tissue donations to enroll a greater number of New Yorkers as donors through the authorization of a public-private partnership that will foster innovative and cost-effective approaches toward enrollment of donors and that will remove unnecessary barriers to enrollment. S 2. Section 4310 of the public health law, as amended by chapter 639 of the laws of 2006, the section heading as separately amended by chap- ter 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 chap- ters 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. 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. [Such registry shall contain a listing of all donors who have declared their consent to make an anatomical gift.] 2. THE COMMISSIONER MAY ENTER INTO A CONTRACT FOR THE OPERATION AND PROMOTION OF SUCH REGISTRY SUBJECT TO SUCH TERMS AND CONDITIONS AS MAY BE CONTAINED WITHIN SUCH CONTRACT WITH A NOT-FOR-PROFIT STATEWIDE ORGAN-
IZATION THAT HAS EXPERIENCE WORKING WITH ORGAN, EYE AND TISSUE PROCURE- MENT 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 COMMISSIONER. THE DEPARTMENT, THE DEPARTMENT OF MOTOR VEHICLES, THE STATE BOARD OF ELECTIONS AND ANY OTHER APPLICABLE STATE AGENCY SHALL COOPERATE IN THE COLLECTION AND TRANSFER OF REGISTRANT DATA TO THE CONTRACTOR. 3. THE DUTIES OF THE CONTRACTOR MAY 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. ACCESS SHALL ALSO BE AVAILABLE, TO THE EXTENT PRACTICABLE, TO REGISTRANTS TO CONFIRM THE ACCURACY AND VALIDITY OF THEIR REGISTRATION AND TO AMEND OR REVOKE THEIR REGISTRATION, SUBJECT TO REASONABLE PROCEDURES TO VERIFY THEIR IDENTITY. (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, BY THE CONTRACTOR ONLY FOR PURPOSES OF QUALITY ASSESSMENT AND IMPROVEMENT, TECHNICAL SUPPORT AND DONOR SERVICE, OR BY INDIVIDUAL REGISTRANTS FOR THE PURPOSES OF CONFIRMING THE ACCURACY AND VALIDITY OF THEIR REGISTRA- TION OR MAKING, AMENDING OR REVOKING THEIR REGISTRATION. (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; (B) PREPARATION AND SUBMISSION OF A PLAN TO ENCOURAGE ORGAN DONATION THROUGH EDUCATION AND MARKETING EFFORTS AND OTHER RECOMMENDATIONS THAT WOULD STREAMLINE AND ENHANCE THE COST-EFFECTIVE OPERATION OF THE REGIS- TRY; AND (C) 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 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) 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)] (III) indication made on a voter registration form pursuant to subdivision five of section 5-210 of the election law, (IV) ENROLLMENT THROUGH THE ORGAN, EYE AND TISSUE DONOR REGISTRY WEBSITE, (V) PAPER ENROLLMENT SUBMITTED TO THE REGISTRY, or [(e)] (VI) 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 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 THE USE OF UNIQUE IDENTIFIERS THAT PROVIDE CONFIDENCE IN THE IDENTITY OF THE PERSON PROVIDING THE ELECTRONIC SIGNATURE. The registration shall take effect upon the provision of A written RECEIPT or electronic notice of the registration 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 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 REGISTRY; OR (II) REGISTRANTS SUBMITTING AN AMENDMENT ELECTRONICALLY THROUGH THE ORGAN, EYE AND TISSUE DONOR REGISTRY WEBSITE. (C) REMOVAL FROM THE ORGAN, EYE AND TISSUE DONOR REGISTRY SHALL BE ACCOMPLISHED BY PROVIDING NOTIFICATION TO THE REGISTRY. 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 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 3. 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) 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)] (III) indication made on a voter registration form pursuant to subdivision five of section 5-210 of the election law, (IV) ENROLLMENT THROUGH THE ORGAN, EYE AND TISSUE DONOR REGISTRY WEBSITE, (V) PAPER ENROLLMENT SUBMITTED TO THE REGISTRY, or [(e)] (VI) through any other method identified by the commissioner. ENROLLMENT THROUGH THE ORGAN, EYE AND TISSUE DONOR REGISTRY WEBSITE THROUGH ANY OF THE MEANS LISTED ABOVE MAY BE SIGNED BY ELECTRONIC SIGNA- TURE, IN ACCORDANCE WITH THE PROVISIONS OF ARTICLE THREE OF THE STATE TECHNOLOGY LAW, SUPPORTED BY THE USE OF UNIQUE IDENTIFIERS THAT PROVIDE CONFIDENCE IN THE IDENTITY OF THE PERSON PROVIDING THE ELECTRONIC SIGNA- TURE. The registration shall take effect upon the provision of A written RECEIPT or electronic notice of the registration to the [person] INDI- VIDUAL enrolling in the registry. (B) AMENDMENTS CAN BE MADE BY THE FOLLOWING: (I) REGISTRANTS SUBMITTING AN AMENDMENT IN WRITING TO THE REGISTRY; OR
(II) REGISTRANTS SUBMITTING AN AMENDMENT ELECTRONICALLY THROUGH THE ORGAN, EYE AND TISSUE DONOR REGISTRY WEBSITE. (C) REMOVAL FROM THE ORGAN, EYE AND TISSUE DONOR REGISTRY SHALL BE ACCOMPLISHED BY PROVIDING NOTIFICATION TO THE REGISTRY. 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 4. 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 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, PROVIDED, HOWEVER, THAT ANY REMAINING FUNDS, NOT NECESSARY FOR THESE PURPOSES, MAY BE EXPENDED FOR ORGAN TRANSPLANT RESEARCH AND EDUCATION PROJECTS. S 5. 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 two 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 three of this act shall take effect.

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