S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   1304
 
                        2019-2020 Regular Sessions
 
                             I N  S E N A T E
 
                             January 14, 2019
                                ___________
 
 Introduced  by  Sen.  SERINO -- read twice and ordered printed, and when
   printed to be committed to the Committee on Health
 
 AN ACT to amend the public health  law,  in  relation  to  developing  a
   Parkinson's disease assessment program in the state
 
   THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section 1. The public health law is amended by adding a new article 18
 to read as follows:
                                ARTICLE 18
                  PARKINSON'S DISEASE ASSESSMENT PROGRAM
 SECTION 1801. DEFINITIONS.
         1802. PARKINSON'S DISEASE REGISTRY.
   § 1801. DEFINITIONS. FOR THE PURPOSES OF THIS ARTICLE: 1. "PARKINSON'S
 DISEASE" SHALL  MEAN  A  CHRONIC  AND  PROGRESSIVE  NEUROLOGIC  DISORDER
 RESULTING FROM DEFICIENCY OF THE NEUROTRANSMITTER DOPAMINE AS THE CONSE-
 QUENCE OF DEGENERATIVE, VASCULAR, OR INFLAMMATORY CHANGES IN THE AREA OF
 THE BRAIN CALLED THE BASAL GANGLIA. SUCH DISORDER SHALL BE CHARACTERIZED
 BY  TREMOR  AT  REST,  SLOW  MOVEMENTS, AND RIGIDITY OF MOVEMENT, DROOPY
 POSTURE, MUSCLE WEAKNESS, AND UNSTEADY OR SHUFFLING GAIT; AND
   2. "FACILITY" SHALL MEAN ANY GOVERNMENTAL OR PRIVATE  AGENCY,  DEPART-
 MENT,  INSTITUTION, CLINIC, LABORATORY, HOSPITAL, NURSING CARE FACILITY,
 HEALTH MAINTENANCE ORGANIZATION, ASSOCIATION  OR  OTHER  SIMILAR  ENTITY
 THAT PROVIDES MEDICAL CARE.
   § 1802. PARKINSON'S  DISEASE REGISTRY. 1. THE DEPARTMENT SHALL CONDUCT
 A  PROGRAM  OF    EPIDEMIOLOGICAL  ASSESSMENTS  OF  THE   INCIDENCE   OF
 PARKINSON'S DISEASE IN THE STATE. SUCH PROGRAM SHALL INCLUDE, BUT NOT BE
 LIMITED  TO,  THE  MONITORING  OF  PARKINSON'S  DISEASE  ASSOCIATED WITH
 SUSPECTED CHEMICAL AGENTS ENCOUNTERED BY  THE  GENERAL  PUBLIC  BOTH  IN
 SPECIFIC OCCUPATIONS AND IN THE ENVIRONMENT GENERALLY.
   2.  AN  ATTENDING  PHYSICIAN OR A PERSON REPRESENTING OR EMPLOYED BY A
 FACILITY AS DEFINED BY THE COMMISSIONER SHALL REPORT  THE  EXISTENCE  OF
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
              

                                                            LBD06810-01-9

 S. 1304                             2
 
 PARKINSON'S  DISEASE  TO  THE  DEPARTMENT  WHEN  SUCH PHYSICIAN OR OTHER
 PERSON DIAGNOSES THE PRESENCE OF THAT ILLNESS OR A PATIENT IS PRESCRIBED
 MEDICATION THAT IS USED TO TREAT PARKINSON'S DISEASE OR  RELATED  NEURO-
 LOGICAL CONDITIONS.
   3.  (A)  THE  COMMISSIONER  SHALL ANALYZE AVAILABLE INCIDENCE DATA AND
 PREPARE REPORTS AS NECESSARY TO IDENTIFY PARKINSON'S DISEASE HAZARDS TO:
   (I) PUBLIC HEALTH;
   (II) SPECIFIC OCCUPATIONS; AND
   (III) GEOGRAPHIC AREAS AND THEIR INTERVENTIONS AND REMEDIES.
   (B) THE COMMISSIONER SHALL ISSUE AN ANNUAL REPORT THAT SHALL BE DESIG-
 NATED AS A PARKINSON'S DISEASE REPORT AND SHALL, AT A  MINIMUM,  CONTAIN
 INFORMATION WHICH THE COMMISSIONER ESTABLISHES AS NECESSARY TO IDENTIFY,
 LOCATE AND INVESTIGATE THE:
   (I) OCCURRENCE;
   (II) FREQUENCY;
   (III) INCIDENCE; AND
   (IV) CONCENTRATIONS IN PARTICULAR OCCUPATIONS; CAUSE, EFFECT AND PROG-
 NOSIS  OF PARKINSON'S DISEASE, AND OTHER RELEVANT DATA AND FINDINGS WITH
 RESPECT THERETO.
   (C) PARKINSON'S DISEASE REPORTS AND DATA SHALL BE  MAINTAINED  BY  THE
 DEPARTMENT IN A MANNER SUITABLE FOR RESEARCH PURPOSES, AND SHALL BE MADE
 AVAILABLE TO PERSONS SET FORTH IN THIS ARTICLE.
   4.  NOTWITHSTANDING  ANY  OTHER  PROVISIONS  OF  LAW,  ALL INFORMATION
 COLLECTED PURSUANT TO THIS ARTICLE SHALL BE CONFIDENTIAL INSOFAR AS  THE
 IDENTITY OF THE INDIVIDUAL PATIENT IS CONCERNED AND SHALL BE USED SOLELY
 FOR THE PURPOSES AS PROVIDED IN THIS ARTICLE. ACCESS TO SUCH INFORMATION
 SHALL  BE  LIMITED  TO  THE  AUTHORIZED  EMPLOYEES OF THE DEPARTMENT AND
 PERSONS WITH A VALID SCIENTIFIC INTEREST AND QUALIFICATIONS, AS  DEFINED
 BY  THE COMMISSIONER, WHO ARE ENGAGED IN DEMOGRAPHIC, EPIDEMIOLIGICAL OR
 OTHER SIMILAR STUDIES RELATED TO HEALTH, AND WHO AGREE, IN  WRITING,  TO
 MAINTAIN CONFIDENTIALITY AS ESTABLISHED BY THE COMMISSIONER.
   5. (A) THE DEPARTMENT SHALL MAINTAIN AN ACCURATE RECORD OF ALL PERSONS
 WHO  ARE  GIVEN  ACCESS TO THE INFORMATION CONTAINED IN SUCH PARKINSON'S
 DISEASE REPORTS AS ESTABLISHED IN SUBDIVISION  THREE  OF  THIS  SECTION.
 SUCH RECORD SHALL INCLUDE:
   (I) THE NAME OF THE PERSON AUTHORIZING ACCESS;
   (II)  THE NAME, TITLE, AND ORGANIZATIONAL AFFILIATION OF PERSONS GIVEN
 ACCESS; AND
   (III) DATES OF ACCESS AND THE SPECIFIC PURPOSE FOR  WHICH  INFORMATION
 IS TO BE USED.
   (B)  THE  RECORD  OF  ACCESS SHALL BE OPEN TO PUBLIC INSPECTION DURING
 NORMAL OPERATING HOURS OF THE DEPARTMENT.
   6. PERSONS WITH A VALID SCIENTIFIC INTEREST WHO ARE ENGAGED  IN  DEMO-
 GRAPHIC, EPIDEMIOLOGICAL, OR OTHER SIMILAR STUDIES RELATED TO HEALTH WHO
 MEET  QUALIFICATIONS  AS DETERMINED BY THE DEPARTMENT, AND WHO AGREE, IN
 WRITING, TO MAINTAIN CONFIDENTIALITY, MAY BE AUTHORIZED ACCESS TO CONFI-
 DENTIAL INFORMATION. ANY PERSON WHO, IN VIOLATION OF A WRITTEN AGREEMENT
 TO MAINTAIN CONFIDENTIALITY, DISCLOSES ANY INFORMATION PROVIDED PURSUANT
 TO THIS SECTION, OR WHO  USES  INFORMATION  PROVIDED  PURSUANT  TO  THIS
 SECTION  IN A MANNER OTHER THAN THAT PRESCRIBED BY THE COMMISSIONER, MAY
 BE DENIED FURTHER ACCESS TO ANY CONFIDENTIAL INFORMATION  MAINTAINED  BY
 THE DEPARTMENT.
   7.  NOTWITHSTANDING  ANY  OTHER  PROVISIONS OF LAW, THE DEPARTMENT MAY
 AUTHORIZE A NEW YORK MEDICAL RESEARCH INSTITUTION TO OVERSEE  AND  MAIN-
 TAIN  THE  PARKINSON'S DISEASE REGISTRY UPON A SHOWING OF THE ABILITY TO
 COLLECT AND ANALYZE INFORMATION IN A  TIMELY  MANNER  AND  MAINTAIN  THE

 S. 1304                             3
 
 CONFIDENTIALITY  AND  PRIVACY OF ALL RECORDS HOUSED THEREIN. THE COMMIS-
 SIONER SHALL  REMAIN  RESPONSIBLE  FOR  ENSURING  REPORTING  PROCEDURES,
 PRIVACY  COMPLIANCE, AND APPROVAL FOR ACCESS TO THE RECORDS ARE SUITABLE
 AND COMPLIANT WITH ALL RULES AND REGULATIONS.
   8.  THE COMMISSIONER MAY ENTER INTO CONTRACTS AS ARE NECESSARY FOR THE
 CONDUCT OF SUCH PROGRAM AND MAY ACCEPT, ON BEHALF OF THE  STATE,  GRANTS
 OF PUBLIC OR PRIVATE FUNDS FOR SUCH PROGRAM.
   9.  THE  COMMISSIONER  MAY COORDINATE THE PARKINSON'S DISEASE REGISTRY
 WITH ALL OTHER PUBLIC HEALTH REGISTRIES WHERE PRACTICABLE, INCLUDING BUT
 NOT LIMITED TO ARTICLE TWENTY AND SECTION TWO THOUSAND FOUR HUNDRED  ONE
 OF  THIS  CHAPTER, OR ANY OTHER EPIDEMIOLOGICAL ASSESSMENTS CONDUCTED BY
 THE DEPARTMENT TO DETERMINE PUBLIC HEALTH  INCIDENCE  RATES  AND  CORRE-
 LATIONS  WITH  ENVIRONMENTAL FACTORS, GEOGRAPHIC LOCATIONS, OR ANY OTHER
 STATISTICALLY RELEVANT INFORMATION.
   10. THE REGISTRY SHALL PROVIDE INFORMATION TO SUPPLEMENT  THE  COORDI-
 NATING  COUNCIL AS PROVIDED BY SECTION TWO THOUSAND FOUR-A OF THIS CHAP-
 TER. UPON THE RECOMMENDATION OF THE COORDINATING COUNCIL AND A  MAJORITY
 VOTE,  A  DESIGNEE  SHALL BE CONSULTED TO ATTEND ALL COUNCIL MEETINGS TO
 PROVIDE INFORMATION AND ANALYSIS OF  INFORMATION  CONTAINED  WITHIN  THE
 PARKINSON'S DISEASE REGISTRY AND REPORTS.
   11.  THE  DEPARTMENT, WHERE PRACTICABLE, SHALL MAKE AVAILABLE INFORMA-
 TION REGARDING RESEARCH OPPORTUNITIES, CLINICAL TRIALS, OR PUBLIC AWARE-
 NESS CAMPAIGNS ON ITS WEBSITE RELATED TO PARKINSON'S  DISEASE  RESEARCH,
 IDENTIFICATION, AND TREATMENT.
   12.  THE COMMISSIONER SHALL PROMULGATE RULES AND REGULATIONS TO IMPLE-
 MENT THE PROVISIONS OF THIS ARTICLE.
   § 2. This act shall take effect immediately.