Senate Bill S3549

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

                                  3549

                       2009-2010 Regular Sessions

                            I N  S E N A T E

                             March 24, 2009
                               ___________

Introduced  by  Sen.  DUANE  -- 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  the  control  of
  progressive neurological diseases

  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
20-B to read as follows:
                               ARTICLE 20-B
             REPORTING OF PROGRESSIVE NEUROLOGICAL DISEASES

SECTION 2010. AMYOTROPHIC   LATERAL  SCLEROSIS;  POWERS  AND  DUTIES  OF
                COMMISSIONER.
        2011. AMYOTROPHIC LATERAL SCLEROSIS; REGISTRY PURPOSE.
        2012. REPORTING.
        2013. AMYOTROPHIC LATERAL SCLEROSIS; REPORTS CONFIDENTIAL.
        2014. AMYOTROPHIC LATERAL SCLEROSIS; COMPULSORY  SUBMISSION  FOR
                SUPERVISION OR INSPECTION NOT REQUIRED.
  S  2010.  AMYOTROPHIC  LATERAL SCLEROSIS; POWERS AND DUTIES OF COMMIS-
SIONER.   THE COMMISSIONER SHALL, TO THE  EXTENT  THAT  FUNDS  ARE  MADE
AVAILABLE:
  1.  DEVELOP A SYSTEM TO COLLECT DATA ON AMYOTROPHIC LATERAL SCLEROSIS,
INCLUDING INFORMATION  RELEVANT  TO  INCIDENCE  AND  PREVALENCE  OF  THE
DISEASE IN NEW YORK STATE, INCLUDING BUT NOT LIMITED TO MORTALITY, METH-
ODS  OF TREATMENT, PREVENTION AND CURE OF AMYOTROPHIC LATERAL SCLEROSIS,
AND ALLIED DISEASES, NAMES AND LOCATIONS OF THE FACILITIES AVAILABLE  IN
THE  SEVERAL  COUNTIES  AND  CITIES  OF THE STATE, FOR THE DIAGNOSIS AND
TREATMENT OF THESE DISEASES,  AND  SHALL  COOPERATE  WITH  LOCAL  HEALTH
AUTHORITIES,  PHYSICIANS, HOSPITALS, CLINICS AND VOLUNTARY ASSOCIATIONS,
IN THE DEVELOPMENT OF SUITABLE FACILITIES FOR THE  DIAGNOSIS,  TREATMENT
AND CONTROL OF AMYOTROPHIC LATERAL SCLEROSIS.

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD03283-01-9
              

S. 3549                             2

  2.  ESTABLISH  A  STATEWIDE REGISTRY FOR THE COLLECTION AND STORAGE OF
SUCH DATA TO INCLUDE A POPULATION-BASED REGISTRY OF CASES OF AMYOTROPHIC
LATERAL SCLEROSIS IN NEW YORK STATE.
  3.  ESTABLISH  A  STATEWIDE  IN-HOME BRAIN TO COMPUTER INTERFACE PILOT
PROGRAM.
  S 2011. AMYOTROPHIC LATERAL SCLEROSIS; REGISTRY PURPOSE.  1.  PURPOSE.
IT IS THE PURPOSE OF THE REGISTRY TO GATHER DATA CONCERNING
  A.   AMYOTROPHIC LATERAL SCLEROSIS, INCLUDING THE INCIDENCE AND PREVA-
LENCE OF AMYOTROPHIC LATERAL SCLEROSIS IN NEW YORK STATE;
  B. THE ENVIRONMENTAL AND OCCUPATIONAL FACTORS THAT MAY  BE  ASSOCIATED
WITH THE DISEASE;
  C.  THE AGE, RACE OR ETHNICITY, GENDER, AND FAMILY HISTORY OF INDIVID-
UALS WHO ARE DIAGNOSED WITH THE DISEASE.
  2. BRAIN TO COMPUTER INTERFACE PILOT PROGRAM PURPOSE.    THE  GOAL  OF
THIS  PILOT  PROGRAM  IS TO DEMONSTRATE THAT BRAIN TO COMPUTER INTERFACE
TECHNOLOGY IS A CLINICALLY PRACTICAL AND IMPORTANT NEW COMMUNICATION AND
CONTROL OPTION THAT CAN IMPROVE THE LIVES  OF  PEOPLE  WITH  AMYOTROPHIC
LATERAL SCLEROSIS AND OTHER SEVERE MOTOR DISABILITIES.
  3.  REPORTING.    WHENEVER AN EXAMINATION AND/OR TESTING DISCLOSES THE
EXISTENCE OF AMYOTROPHIC LATERAL SCLEROSIS, THE PERSON MAKING SUCH EXAM-
INATION AND/OR TESTING OR THE DIAGNOSED PATIENT MAY  REPORT  IMMEDIATELY
BUT  NOT  LATER  THAN ONE HUNDRED EIGHTY DAYS THE SAME TOGETHER WITH ALL
THE FACTS IN CONNECTION THEREWITH TO THE DEPARTMENT.
  4. GUIDELINES.  THE DEPARTMENT SHALL ESTABLISH AND UPDATE AS NECESSARY
GUIDELINES DESIGNATING THE SPECIFIC DATA ELEMENTS TO BE REPORTED TO  THE
DEPARTMENT  PURSUANT  TO  THIS  SECTION.  THE DEPARTMENT SHALL MAKE SUCH
GUIDELINES AVAILABLE GENERALLY.
  5. REGIONAL TRAINING.  THE DEPARTMENT SHALL, TO THE EXTENT  FUNDS  ARE
MADE  AVAILABLE, ESTABLISH OR CONTRACT FOR REGIONAL TRAINING PROGRAMS TO
PROVIDE TRAINING TO ANY AMYOTROPHIC LATERAL SCLEROSIS REPORTING FACILITY
AND PHYSICIAN OR OTHER HEALTH CARE PROVIDER.    SUCH  REGIONAL  TRAINING
PROGRAMS  SHALL  PROVIDE TRAINING RELATING TO THE SPECIFIC DATA ELEMENTS
WHICH MUST BE REPORTED PURSUANT TO THIS  SECTION,  THE  DATA  DICTIONARY
ESTABLISHED  PURSUANT  TO  THIS  SECTION; TRAINING WILL ALSO BE PROVIDED
RELATIVE TO THE OPERATION AND SUPPORT OF  BRAIN  TO  COMPUTER  INTERFACE
TECHNOLOGY,  AND  IS  INTENDED  TO  ENSURE  QUALITY, TIMELY AND COMPLETE
COMPLIANCE WITH THIS SECTION.
  6. FAILURE TO COMPLY.  WHERE AN AMYOTROPHIC LATERAL SCLEROSIS  REPORT-
ING  FACILITY  FAILS  TO COMPLY WITH THE PROVISIONS OF THIS SECTION, THE
DEPARTMENT MAY ELECT TO PERFORM REGISTRY  SERVICES  FOR  SUCH  FACILITY.
SUCH  AMYOTROPHIC  LATERAL  SCLEROSIS REPORTING FACILITY SHALL REIMBURSE
THE DEPARTMENT FOR ACTUAL EXPENSES INCURRED.
  7. FORM OF NOTICE.  THE NOTICES REQUIRED BY THIS SECTION SHALL BE UPON
FORMS SUPPLIED BY THE COMMISSIONER AND SHALL CONTAIN SUCH INFORMATION AS
SHALL BE REQUIRED BY THE COMMISSIONER.
  8. DEFINITION.   FOR THE PURPOSE  OF  THIS  SECTION,  AN  "AMYOTROPHIC
LATERAL  SCLEROSIS  REPORTING  FACILITY"  MEANS A HOSPITAL AS DEFINED IN
ARTICLE TWENTY-EIGHT OF THIS CHAPTER, CLINIC OR ANY ORGANIZATION  CERTI-
FIED  PURSUANT  TO  ARTICLE FORTY-FOUR OF THIS CHAPTER, OR OTHER SIMILAR
PUBLIC OR PRIVATE INSTITUTION.
  9. RULES AND REGULATIONS.  THE COMMISSIONER SHALL HAVE  THE  POWER  TO
PROMULGATE  ANY  SUCH  RULES  AND  REGULATIONS AS SHALL BE NECESSARY AND
PROPER TO EFFECTUATE THE PURPOSES OF THIS SECTION.
  S 2012. REPORTING.  THE COMMISSIONER SHALL, SUBMIT AN ANNUAL REPORT TO
THE GOVERNOR, THE TEMPORARY PRESIDENT OF THE SENATE AND THE  SPEAKER  OF
THE  ASSEMBLY. THE REPORT SHALL INCLUDE AN EVALUATION OF THE AMYOTROPHIC

S. 3549                             3

LATERAL SCLEROSIS REGISTRY AS IT  RELATES  TO  TIMELINESS,  QUALITY  AND
COMPLETENESS; AN EVALUATION OF THE UTILITY OF THE REGISTRY FOR SCIENTIF-
IC  RESEARCH;  AN  EVALUATION  OF  THE ACCESS, TIMELINESS AND QUALITY OF
REPORTING  INFORMATION  TO RESEARCHERS AND OTHER SIMILAR INDIVIDUALS; AN
EVALUATION OF THE REGISTRY'S DATA ELEMENTS, INCLUDING  TREATMENT,  STAGE
OF  DISEASE,  OCCUPATION AND RESIDENCE; AN EVALUATION OF THE FEASIBILITY
AND UTILITY OF INCLUSION OF OCCUPATIONAL HISTORY AND RESIDENCE  HISTORY;
AND  AN  EVALUATION  OF  INTEGRATING  THE REGISTRY WITH OTHER DATA BASES
MAINTAINED BY STATE AGENCIES AND DEPARTMENTS,  INCLUDING  THE  STATEWIDE
PLANNING AND RESEARCH COOPERATIVE SYSTEM.
  S  2013.  AMYOTROPHIC  LATERAL  SCLEROSIS; REPORTS CONFIDENTIAL.   THE
REPORTS OF AMYOTROPHIC LATERAL SCLEROSIS  CASES  MADE  PURSUANT  TO  THE
PROVISIONS OF THIS ARTICLE SHALL NOT BE DIVULGED OR MADE PUBLIC SO AS TO
DISCLOSE  THE IDENTITY OF ANY PERSON TO WHOM THEY RELATE, BY ANY PERSON,
EXCEPT INSOFAR AS MAY BE AUTHORIZED IN THE SANITARY CODE.
  S 2014.  AMYOTROPHIC  LATERAL  SCLEROSIS;  COMPULSORY  SUBMISSION  FOR
SUPERVISION  OR  INSPECTION NOT REQUIRED.  NOTHING IN THIS ARTICLE SHALL
BE CONSTRUED TO COMPEL ANY INDIVIDUAL TO SUBMIT  TO  MEDICAL  OR  HEALTH
DEPARTMENT SUPERVISION OR INSPECTION.
  S 2. This act shall take effect immediately.