This bill has been amended

Bill S5046-2013

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

  • Jun 10, 2013: REPORTED AND COMMITTED TO FINANCE
  • May 7, 2013: REFERRED TO HEALTH

Meetings

Votes

VOTE: COMMITTEE VOTE: - Health - Jun 10, 2013
Ayes (15): Hannon, Ball, Farley, Fuschillo, Golden, Larkin, Savino, Seward, Young, Rivera, Montgomery, Hassell-Thompson, Adams, O'Brien, Hoylman
Ayes W/R (1): Peralta
Nays (1): Felder

Memo

BILL NUMBER:S5046

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 OF BILL:

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 SPECIFIC PROVISIONS:

Section 1 of the bill amends section 4310 of the public health law to authorize the operation of the organ, eye, and tissue donation registry by a not-for-profit entity by:

* Renumbering subdivision 1 of the law as subdivision 2 and creating a new subdivision 1 that provides the bill's legislative intent and findings;

*Renumbering subdivision 2 of the law as subdivision 5 and amending the subdivision to provide language allowing the contractor to facilitate enrollment through its website or paper enrollment, allowing for the use of an electronic signature, providing the contractor with authorization to make changes to the registry as requested by registered donors, and incorporating language from subdivision 5 of the law, which allows donors to specify which organs they consent to donate and whether their organs may be used for transplant, research, or both;

*Repealing subdivision 3 of the law and creating a new subdivision 3 that sets out the duties of the contractor and incorporates language from subdivision 3 of the law, which provides access to the registry to federal organ procurement organizations, licensed eye and tissue banks, and other entities approved by the commissioner of health;

* Repealing subdivision 4 of the law and adding a new subdivision 4 that provides a payment structure for the new contractor;

* Repealing subdivision 5 of the law and replacing the provisions with a new subdivision as noted above;

*Amending subdivision 6 of the law to clarify that any individual registered in the New York State Donate Life Registry before July 23, 2008 has expressed consent to donate their organs, eyes, and tissue upon death; and

*Repealing subdivision 7 of the law and renumbering subdivision 8 of the law as subdivision 7, which provides the commissioner of health with the authority to promulgate rules and regulations necessary to implement the law.

Section 2 of the bill amends subdivision 2 of section 4310 of the public health law of 2012, and renumbers it as subdivision 5. The subdivision is amended to provide language allowing the contractor to facilitate enrollment through its website or paper enrollment, allowing for the use of an electronic, signature, providing the

contractor with authorization to make changes to the registry as requested by registered donors, and incorporating language from subdivision 5 of the law, which allows donors to specify which organs they consent to donate and whether their organs may be used for transplant, research, or both;

Section 3 of 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 4 of the bill is the effective date.

JUSTIFICATION:

New York State currently ranks 48th in donor designation share (percentage 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.

For example, Texas turned its registry over to Donate Life Texas Inc. in October of 2012. Donate Life Texas Inc. created a new electronic registration process and took over promotion of the registry from the State of Texas. Since then, a surge in enrollment has taken place, with 100,000 new registrations taking place in November and December of 2012 and over 150,000 new registrations in January of 2013. Previously, Texas had averaged only 7,000 registrations a month. Texas is currently predicted to enroll 8,000,000 new donors in five years, and will soon surpass New York State's donor share.

PRIOR LEGISLATIVE HISTORY:

New bill.

FISCAL IMPLICATIONS:

None.

EFFECTIVE DATE:

This act shall take effect on the sixtieth day after it shall become law; provided that the amendments to subdivision 2 of section 4310 of the public health law, made by section 1 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 2 of this act shall take effect.


Text

STATE OF NEW YORK ________________________________________________________________________ 5046 2013-2014 Regular Sessions IN SENATE 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.
[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
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
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
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.

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