S T A T E O F N E W Y O R K
________________________________________________________________________
5388
2009-2010 Regular Sessions
I N A S S E M B L Y
February 13, 2009
___________
Introduced by M. of A. MAISEL, DINOWITZ, BROOK-KRASNY, PHEFFER, JAFFEE
-- Multi-Sponsored by -- M. of A. ESPAILLAT, V. LOPEZ, MARKEY, MAYER-
SOHN, McENENY, REILLY, SWEENEY, WEISENBERG -- read once and referred
to the Committee on Health
AN ACT to amend the public health law, in relation to creating a lymp-
hedema and lymphatic diseases registry and creating a lymphedema and
lymphatic diseases advisory board
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
LYMPHEDEMA AND LYMPHATIC DISEASES REGISTRY;
ADVISORY BOARD
SECTION 1800. DUTY TO REPORT.
1801. DEFINITIONS.
1802. CONTENTS OF REPORT; REGISTRY.
1803. DUTIES OF DEPARTMENT.
1804. DUTIES OF COMMISSIONER.
1805. LYMPHEDEMA AND LYMPHATIC DISEASES ADVISORY BOARD.
S 1800. DUTY TO REPORT. EVERY PHYSICIAN OR HEALTH CARE PROVIDER SHALL
REPORT THE EXISTENCE OF LYMPHEDEMA AND LYMPHATIC DISEASE TO THE DEPART-
MENT FOR COMPILATION INTO A REGISTRY OF INFORMATION AND DATA.
S 1801. DEFINITIONS. AS USED IN THIS ARTICLE:
1. "LYMPHEDEMA" SHALL MEAN AN ACCUMULATION OF LYMPHATIC FLUID IN THE
INTERSTITIAL TISSUE THAT CAUSES SWELLING, MOST OFTEN IN THE ARMS AND/OR
LEGS, AND OCCASIONALLY IN OTHER PARTS OF THE BODY, BY ANY CAUSE.
2. LYMPHATIC DISEASES SHALL INCLUDE, BUT NOT BE LIMITED TO: INSUFFI-
CIENCY OF LYMPHATIC CIRCULATORY FUNCTION (TO INCLUDE ALL FORMS OF LYMP-
HEDEMA), LIPEDEMA, COMPLEX CONGENITAL DISEASES OF THE LYMPHATIC VASCULA-
TURE, INCLUDING LYMPHANGIOMATOSIS, LYMPHANGIOLEIO-MYOMATOSIS,
EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD07194-02-9
A. 5388 2
LYMPHANGIECTASIAS, LYMPHANGIOMAS, CYSTIC HYGROMAS, GORHAM'S DISEASE,
LYMPHANGIOSARCOMA, AND COMPLEX VASCULAR/LYMPHATIC MALFORMATIONS.
S 1802. CONTENTS OF REPORT; REGISTRY. THE REPORT AS SET FORTH IN
SECTION EIGHTEEN HUNDRED OF THIS ARTICLE SHALL BE DESIGNATED AS THE
LYMPHEDEMA AND LYMPHATIC DISEASES REPORT AND SHALL CONTAIN INFORMATION
WHICH THE COMMISSIONER, IN CONSULTATION WITH THE LYMPHEDEMA AND LYMPHAT-
IC DISEASES ADVISORY BOARD ESTABLISHED IN SECTION EIGHTEEN HUNDRED FIVE
OF THIS ARTICLE, DEEMS NECESSARY TO IDENTIFY PRIMARY, OR SOURCE CASES OF
LYMPHEDEMA AND LYMPHATIC DISEASES AND SECONDARY CASES OF SUCH DISEASES,
INVESTIGATE THE INCIDENCES AND PREVALENCE OF LYMPHEDEMA AND LYMPHATIC
DISEASES, AND OTHER RELEVANT DATA AND FINDINGS WITH RESPECT THERETO.
S 1803. DUTIES OF DEPARTMENT. 1. THE LYMPHEDEMA AND LYMPHATIC DISEASES
REPORTS PROVIDED BY PHYSICIANS AND HEALTH CARE PROVIDERS SHALL BE MAIN-
TAINED BY THE DEPARTMENT IN A REGISTRY SUITABLE FOR RESEARCH PURPOSES,
AND SHALL BE MADE AVAILABLE TO PERSONS AS SET FORTH IN SUBDIVISION TWO
OF THIS SECTION.
2. NOTWITHSTANDING ANY INCONSISTENT PROVISION OF LAW, ALL INFORMATION
COLLECTED PURSUANT TO THIS ARTICLE SHALL BE CONFIDENTIAL WITH RESPECT TO
THE IDENTITY OF THE INDIVIDUAL PATIENT AND SHALL BE USED SOLELY FOR THE
PURPOSES PROVIDED IN THIS ARTICLE. ACCESS TO SUCH INFORMATION SHALL BE
LIMITED TO AUTHORIZED EMPLOYEES OF THE DEPARTMENT AND PERSONS WITH A
VALID SCIENTIFIC INTEREST AND QUALIFICATIONS, AS DEFINED BY THE COMMIS-
SIONER, WHO ARE ENGAGED IN DEMOGRAPHIC, EPIDEMIOLOGICAL OR OTHER SIMILAR
STUDIES RELATED TO HEALTH, AND WHO AGREE, IN WRITING, TO MAINTAIN CONFI-
DENTIALITY AS ESTABLISHED BY THE COMMISSIONER AND IN ACCORDANCE WITH
APPLICABLE LOCAL, STATE AND FEDERAL LAWS AND REGULATIONS.
3. THE DEPARTMENT SHALL MAINTAIN AN ACCURATE RECORD OF ALL PERSONS WHO
ARE GIVEN ACCESS TO THE INFORMATION CONTAINED IN THE LYMPHEDEMA AND
LYMPHATIC DISEASES REGISTRY. THE RECORD SHALL INCLUDE THE NAME OF THE
PERSON AUTHORIZING ACCESS, THE NAME, TITLE AND ORGANIZATIONAL AFFIL-
IATION OF THE PERSON GIVEN ACCESS, DATES OF ACCESS, AND THE SPECIFIC
PURPOSE FOR WHICH INFORMATION IS TO BE USED. THE RECORD OF ACCESS SHALL
BE OPEN TO PUBLIC INSPECTION DURING NORMAL OPERATING HOURS OF THE
DEPARTMENT.
4. 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 DEPART-
MENT AND MAY BE SUBJECT TO PENALTY OF A FINE AS DETERMINED BY THE
COMMISSIONER.
S 1804. DUTIES OF COMMISSIONER. THE COMMISSIONER SHALL PROMULGATE
RULES AND REGULATIONS TO IMPLEMENT THE PROVISIONS OF THIS ARTICLE,
INCLUDING BUT NOT LIMITED TO:
1. ESTABLISHING THE FORM, CONTENT AND MANNER OF REPORTING BY PHYSI-
CIANS AND HEALTH CARE PROVIDERS FOR FILING THE LYMPHEDEMA AND/OR LYMP-
HATIC DISEASES INFORMATION DATA;
2. DEVELOPING AND MAINTAINING THE LYMPHEDEMA AND LYMPHATIC DISEASES
REGISTRY;
3. DEVELOPING GUIDELINES FOR THE PERMISSIBLE USES FOR THE INFORMATION
MADE AVAILABLE PURSUANT TO THIS ARTICLE;
4. ESTABLISHING PROCEDURES TO MAINTAIN THE CONFIDENTIALITY OF INFORMA-
TION PROVIDED TO PERSONS PURSUANT TO THIS ARTICLE;
5. ESTABLISHING PENALTIES FOR WILLFUL VIOLATIONS OF WRITTEN AGREE-
MENTS TO MAINTAIN CONFIDENTIALITY; AND
A. 5388 3
6. ESTABLISHING THE NECESSARY PROCEDURES TO MEET AND SUPPORT THE
GOALS OF A NATIONAL LYMPHEDEMA AND LYMPHATIC DISEASES REGISTRY ESTAB-
LISHED BY THE FEDERAL GOVERNMENT OR A NATIONALLY RECOGNIZED CENTRAL
LYMPHATIC DISEASE ORGANIZATION.
S 1805. LYMPHEDEMA AND LYMPHATIC DISEASES ADVISORY BOARD. 1. THERE IS
HEREBY ESTABLISHED IN THE DEPARTMENT THE LYMPHEDEMA AND LYMPHATIC
DISEASES ADVISORY BOARD TO BE COMPOSED OF NINE MEMBERS WHO SHALL BE
RESIDENTS OF THE STATE AND SHALL BE APPOINTED IN THE FOLLOWING MANNER:
TWO SHALL BE APPOINTED BY THE TEMPORARY PRESIDENT OF THE SENATE; TWO
SHALL BE APPOINTED BY THE SPEAKER OF THE ASSEMBLY; AND FIVE SHALL BE
APPOINTED BY THE GOVERNOR. THE GOVERNOR SHALL DESIGNATE THE CHAIR OF
THE ADVISORY BOARD. THE MAJORITY OF THE MEMBERS OF THE BOARD SHALL BE
REPRESENTATIVES AND EXPERTS IN THE AREA OF LYMPHATIC RESEARCH, BIOTECH-
NOLOGY RESEARCH, TREATMENT OF LYMPHEDEMA AND/OR LYMPHATIC DISEASES. AT
LEAST ONE APPOINTEE SHALL BE AN INDIVIDUAL OR AN INDIVIDUAL WITH A CLOSE
FAMILY MEMBER DIAGNOSED WITH EITHER PRIMARY OR SECONDARY LYMPHEDEMA OR A
LYMPHATIC DISEASE. AT LEAST ONE APPOINTEE SHALL REPRESENT AN ORGANIZA-
TION DEDICATED SOLELY TO LYMPHEDEMA AND LYMPHATIC DISEASE EDUCATION,
AWARENESS AND RESEARCH. THE MEMBERS OF SUCH BOARD SHALL SERVE FOR A
TERM OF TWO YEARS. VACANCIES SHALL BE FILLED IN THE SAME MANNER AS THE
ORIGINAL APPOINTMENTS. THE ADVISORY BOARD SHALL MEET AT LEAST THREE
TIMES A YEAR, AT THE REQUEST OF THE CHAIR. THE MEMBERS OF THE BOARD
SHALL RECEIVE NO COMPENSATION FOR THEIR SERVICES, BUT SHALL BE ALLOWED
THEIR ACTUAL AND NECESSARY EXPENSES INCURRED IN PERFORMANCE OF THEIR
DUTIES.
2. THE ADVISORY BOARD SHALL BE RESPONSIBLE FOR ADVISING THE COMMIS-
SIONER WITH RESPECT TO THE IMPLEMENTATION OF THIS ARTICLE, INCLUDING BUT
NOT LIMITED TO THE FOLLOWING:
(A) THE DEVELOPMENT AND MAINTENANCE OF THE LYMPHEDEMA AND LYMPHATIC
DISEASES REGISTRY;
(B) THE TYPE OF INFORMATION TO BE COLLECTED AND STORED IN THE REGIS-
TRY;
(C) THE MANNER IN WHICH SUCH DATA IS TO BE COLLECTED;
(D) THE USE AND AVAILABILITY OF SUCH DATA INCLUDING GUIDELINES FOR
SUCH USE; AND
(E) THE NECESSARY PROCEDURES TO MEET AND SUPPORT THE GOALS OF A
NATIONAL LYMPHEDEMA AND LYMPHATIC DISEASES REGISTRY ESTABLISHED BY THE
FEDERAL GOVERNMENT OR A NATIONALLY RECOGNIZED CENTRAL LYMPHATIC DISEASE
ORGANIZATION, IF SUCH REGISTRY IS CREATED PRIOR TO OR AFTER THE EFFEC-
TIVE DATE OF THIS ARTICLE.
3. THE ADVISORY BOARD, IN COLLABORATION WITH THE DEPARTMENT, SHALL
PROVIDE GUIDANCE TO THE DEPARTMENT WITH RESPECT TO PROVIDING EDUCATION
AND PUBLIC AWARENESS ON LYMPHEDEMA AND LYMPHATIC DISEASES, INCLUDING BUT
NOT LIMITED TO:
(A) RAISING PUBLIC AWARENESS ON THE CAUSES AND NATURE OF PRIMARY AND
SECONDARY LYMPHEDEMA AND LYMPHATIC DISEASES; PREVENTION; EARLY DIAGNO-
SIS; CURRENT AND NEW AND EMERGING OPTIONS FOR TREATMENT AND THERAPY;
RESEARCH; MEDICAL INSURANCE; AND LONG-TERM CHRONIC CARE ISSUES.
(B) IDENTIFYING AND EXAMINING THE LIMITATIONS OF EXISTING LAWS, REGU-
LATIONS, PROGRAMS, AND SERVICES WITH REGARD TO LYMPHEDEMA AND LYMPHATIC
DISEASES. SUCH INFORMATION SHALL BE REPORTED, WITH RECOMMENDATIONS, TO
THE GOVERNOR, THE TEMPORARY PRESIDENT OF THE SENATE AND THE SPEAKER OF
THE ASSEMBLY.
(C) FACILITATING COORDINATION OF AND COMMUNICATION AMONG STATE AND
LOCAL AGENCIES AND ORGANIZATIONS REGARDING FACILITATING TREATMENTS,
A. 5388 4
THERAPY, AND NEW AND EMERGING RESEARCH FOR LYMPHEDEMA AND LYMPHATIC
DISEASES.
(D) RECEIVING AND CONSIDERING REPORTS AND TESTIMONY FROM INDIVIDUALS,
LOCAL HEALTH DEPARTMENTS, COMMUNITY-BASED ORGANIZATIONS, VOLUNTARY
HEALTH ORGANIZATIONS, AND OTHER PUBLIC AND PRIVATE ORGANIZATIONS STATE-
WIDE TO LEARN ABOUT LYMPHEDEMA AND LYMPHATIC DISEASES PREVENTION, DIAG-
NOSIS, TREATMENT, THERAPY AND NEW AND EMERGING RESEARCH.
(E) PROVIDING RESOURCES AND INFORMATION TO PATIENTS AND HEALTH CARE
PROVIDERS ABOUT LYMPHEDEMA AND LYMPHATIC DISEASES PREVENTION, DIAGNOSIS,
TREATMENT, THERAPY AND NEW AND EMERGING RESEARCH IN ORDER TO IMPROVE THE
QUALITY OF LIFE FOR THOSE DIAGNOSED AND RECEIVING TREATMENT AND/OR THER-
APY FOR LYMPHEDEMA AND LYMPHATIC DISEASES IN NEW YORK.
4. THE ADVISORY BOARD SHALL ISSUE A REPORT ON AN ANNUAL BASIS INDICAT-
ING THE YEAR'S ACTIVITIES, GOALS AND OBJECTIVES, ACHIEVEMENTS, AND PLANS
FOR THE FOLLOWING YEAR. THE ANNUAL REPORT SHALL ALSO INCLUDE SHORT AND
LONG TERM STRATEGIC GOALS AND OPERATIONAL OBJECTIVES FOR ADDRESSING
LYMPHEDEMA AND LYMPHATIC DISEASE HEALTHCARE AND RESEARCH.
S 2. This act shall take effect immediately.