S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   6493
 
                        2019-2020 Regular Sessions
 
                           I N  A S S E M B L Y
 
                               March 8, 2019
                                ___________
 
 Introduced  by  M.  of  A.  HYNDMAN,  JEAN-PIERRE, BLAKE, BARRON, PERRY,
   WRIGHT, JOYNER, TAYLOR, PICHARDO,  DICKENS,  BICHOTTE,  MOSLEY,  NIOU,
   DAVILA, PEOPLES-STOKES, DE LA ROSA, BARNWELL, RA, GALEF -- Multi-Spon-
   sored  by  --  M. of A. COOK, PRETLOW, SIMON, SIMOTAS -- read once and
   referred to the Committee on Health

 AN ACT to amend the social services law and the public  health  law,  in
   relation  to  establishing  the sickle cell treatment act of 2019; and
   making an appropriation therefor
 
   THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND  ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section  1.  This  act  shall be known and may be cited as the "Sickle
 Cell Treatment Act of 2019".
   § 2. Legislative findings. The legislature hereby finds  and  declares
 the following:
   (1)  Sickle  cell  disease  (SCD) is an inherited disease of red blood
 cells and the CDC (Centers for Disease Control) states  that  SCD  is  a
 major  public  health  concern.  Approximately 1,000 American babies are
 born with the disease each year, while globally 500,000 babies are  born
 annually with the disease.
   (2) Sickle cell disease affects approximately 100,000 Americans and is
 most  common in African-Americans as well as those of Hispanic, Mediter-
 ranean and Middle Eastern ancestry. Nationally, SCD occurs  in  approxi-
 mately  1:500  African-Americans, 1:36,000 Hispanics and 1:80,000 Cauca-
 sians. However, in NYS (New York State) SCD occurs in 1:230 live  births
 to  non-Hispanic  black  mothers, 1:2,320 births to Hispanic mothers and
 1:41,647 Caucasian mothers.
   (3) Approximately 10% of SCD patients reside in NYS. In  NYS,  1:1,146
 live  births  have  sickle  cell  disease,  with  12% of NYS sickle cell
 disease births in the Hispanic population. Higher birth  rates  for  SCD
 occur  in mothers who were born outside of the US. In NYS, approximately
 80% of sickle cell disease patients live in the NYC area.

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

                                                            LBD05436-01-9

 A. 6493                             2
 
   (4) Sickle cell disease is the most costly disease per patient to  NYS
 Medicaid,  costing  $15,000/year/patient.  Despite this, NYS only spends
 about $250,000/year to help improve care and decrease the costs of care.
 This has decreased from  approximately  $500,000  in  2001.  Most  adult
 patients  are  either  not  in care with a hematologist or not receiving
 appropriate disease modifying medications - despite the medical  litera-
 ture which shows costs can be decreased while increasing quality of life
 for  sickle  cell disease patients when in care. With a minimal decrease
 in cost of care/patient of approximately 3%, NYS Medicaid could  achieve
 approximately  $4-5,000,000  in savings. This would more than compensate
 for the cost of the program ($3,000,000).
   (5) Persons with sickle cell trait (SCT) are carriers  of  the  sickle
 cell  gene who have inherited the normal hemoglobin gene from one parent
 and the sickle cell gene from the  other  parent.  More  than  3,000,000
 Americans,  mostly African-Americans, have SCT. Sickle cell trait is not
 a disease, but when both parents have SCT there is a 1 in 4 chance  with
 each  pregnancy  that  the child will be born with SCD. However, SCT has
 its own subtle complications, and can also be deadly.
   (6) Because SCD is a blood disorder and blood goes to all parts of the
 body, people with SCD may exhibit complications  in  all  parts  of  the
 body.  This  includes,  but  is  not limited to, frequent pain episodes,
 entrapment of blood within the spleen, severe anemia, acute lung compli-
 cations (acute chest syndrome), priapism in males and other life-threat-
 ening  conditions.  These  life-threatening  complications  can  develop
 rapidly,  including  infections  of  the  blood (sepsis), meningitis and
 stroke. Stroke can be either silent  (no  overt  symptoms)  or  clinical
 (with symptoms) and can affect children as young as 18 months of age. Up
 to  40%  of children will have had either a silent or clinical stroke by
 the age of 18 years. This impacts their ability to learn and/or  hold  a
 job.
   (7) Sickle cell disease is a cumulative disease with worsening compli-
 cations  and  organ  damage,  including  lungs,  heart  and  kidneys, as
 patients age. In addition, with the toll of  the  disease  on  patients,
 particularly  their  brain, mental health issues are extremely important
 to the sickle cell disease patient and family. The median life expectan-
 cy for SCD is about 45 years. While some  patients  can  remain  without
 symptoms  for  years, many others may not survive childhood or the early
 adult years.
   (8) As a complex disease with multisystem manifestations, SCD requires
 specialized comprehensive and continuous care to achieve the best possi-
 ble outcomes. Newborn screening, genetic counseling  with  education  of
 patients, family members, schools and health care providers are critical
 preventative  measures. These decrease morbidity and mortality, delay or
 prevent complications,  reduce  emergency  room  visits  and  in-patient
 hospital stays, and decrease overall costs of care.
   (9)  Day hospitals, where patients can seek treatment as an outpatient
 avoiding overburdened emergency rooms and hospitalizations, for as  long
 as  8  hours  have  consistently proven in peer reviewed publications to
 improve care and decrease costs in both the pediatric and  adult  sickle
 cell  population. Yet despite this evidence, few day hospitals exist for
 adult sickle cell disease patients.
   (10) In addition to specialized care and support from  medical  staff,
 hospital  administrations  need  to  understand  the importance of their
 support of the medical staff and need for the medical and support  staff
 in  multiple  medical subspecialities in order to provide the comprehen-
 sive care that patients need.  As  well,  insurance  companies  need  to

 A. 6493                             3
 
 understand  that these patients require complicated medical care to stay
 healthy and provide the correct and adequate financial support to  allow
 the hiring of appropriate support staff as well as adequately compensate
 the  medical  staff  for  the  increased  hours it takes to manage these
 complex patients.
   (11) Community based  organizations  provide  a  valuable  service  in
 educating  their  communities  about  sickle cell disease and trait, and
 because they act as a bridge  between  the  treatment  centers  and  the
 community should be included whenever possible in any program to improve
 care to the community.
   The  legislature declares its intent to develop and establish systemic
 mechanisms to improve  the  treatment  and  prevention  of  sickle  cell
 disease.
   § 3. Section 365 of the social services law is amended by adding a new
 subdivision 13 to read as follows:
   13.  ANY  INCONSISTENT PROVISION OF THIS CHAPTER OR OTHER LAW NOTWITH-
 STANDING, THE DEPARTMENT SHALL BE  RESPONSIBLE  FOR  FURNISHING  MEDICAL
 ASSISTANCE  FOR  PREVENTATIVE MEDICAL STRATEGIES, INCLUDING PROPHYLAXIS,
 TREATMENT AND SERVICES FOR ELIGIBLE INDIVIDUALS  WHO  HAVE  SICKLE  CELL
 DISEASE.  FOR  THE  PURPOSES  OF THIS SUBDIVISION, "PREVENTATIVE MEDICAL
 STRATEGIES, TREATMENT AND SERVICES" SHALL INCLUDE, BUT NOT BE LIMITED TO
 THE FOLLOWING:
   (A) CHRONIC BLOOD TRANSFUSION (WITH DEFEROXAMINE CHELATION) TO PREVENT
 STROKE IN INDIVIDUALS WITH SICKLE CELL DISEASE WHO HAVE BEEN  IDENTIFIED
 AS BEING AT HIGH RISK FOR STROKE;
   (B)  GENETIC  COUNSELING  AND TESTING FOR INDIVIDUALS WITH SICKLE CELL
 DISEASE OR THE SICKLE CELL TRAIT; OR
   (C) OTHER TREATMENT AND SERVICES TO PREVENT INDIVIDUALS WHO HAVE SICK-
 LE CELL DISEASE AND WHO HAVE HAD A STROKE FROM HAVING ANOTHER STROKE.
   § 4. Article 31 of the public health law is amended by  adding  a  new
 title 4 to read as follows:
                                 TITLE IV
   PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM
 SECTION 3126. PREVENTION  AND  TREATMENT  OF  SICKLE CELL DISEASE DEMON-
                 STRATION PROGRAM.
   § 3126. PREVENTION AND TREATMENT OF SICKLE CELL DISEASE  DEMONSTRATION
 PROGRAM.  1.  THE  COMMISSIONER SHALL CREATE PREVENTION AND TREATMENT OF
 SICKLE CELL DISEASE  DEMONSTRATION  PROGRAMS  THROUGHOUT  THE  STATE  TO
 IMPLEMENT CARE FOR SICKLE CELL DISEASE PATIENTS BASED ON COMMON PROBLEMS
 FACED  THROUGHOUT  THE  STATE  AS  WELL AS REGIONAL OR LOCAL ISSUES THAT
 AFFECT THE SICKLE CELL DISEASE PATIENT POPULATION.  THESE PROGRAMS WOULD
 NOT ONLY EVALUATE IMPACT OF CARE AND QUALITY OF  LIFE  ON  THEIR  SICKLE
 CELL  DISEASE PATIENTS, BUT ALSO TRACK THE COSTS AND COST SAVINGS OCCUR-
 RING WITH IMPLEMENTED CHANGES.
   2. THE PURPOSE OF THE PREVENTION AND TREATMENT OF SICKLE CELL  DISEASE
 DEMONSTRATION  PROGRAMS WOULD BE TO DEVELOP AND ESTABLISH SYSTEMIC MECH-
 ANISMS TO IMPROVE THE PREVENTION AND TREATMENT OF  SICKLE  CELL  DISEASE
 AND SICKLE CELL TRAIT IN NEW YORK STATE.
   (A)   THE   COMMISSIONER  SHALL  CREATE  AND  CONDUCT  EIGHT  REGIONAL
 PREVENTION AND TREATMENT OF SICKLE CELL DISEASE  DEMONSTRATION  PROGRAMS
 FOR  BOTH  PEDIATRIC  AND ADULT CARE AND SICKLE CELL TRAIT EDUCATION FOR
 FIVE YEARS.
   (B) THE REGIONAL PROGRAMS SHALL BE ESTABLISHED BASED  ON  SICKLE  CELL
 DISEASE  DEMOGRAPHICS  IN THE STATE OF NEW YORK, TO SERVE INDIVIDUALS IN
 DOWNSTATE CITIES, INCLUDING NEW YORK CITY, AND UPSTATE CITIES, INCLUDING

 A. 6493                             4
 
 BUFFALO, ROCHESTER, AND ALBANY. WHERE A HIGHER CONCENTRATION OF PROGRAMS
 WILL BE IN THE NEW YORK CITY AREA.
   (C)  SINCE  MANY  OF  THE SICKLE CELL DISEASE PATIENTS IN THE NEW YORK
 CITY AREA ARE TREATED IN COMMUNITY HOSPITALS, AT LEAST TWO  OF  THE  NEW
 YORK CITY AREA PROGRAMS WILL BE IN COMMUNITY HOSPITALS.
   (D)  THESE  PREVENTION  AND  TREATMENT  OF  SICKLE  CELL DEMONSTRATION
 PROGRAMS WILL DEVELOP AND ESTABLISH SYSTEMIC MECHANISMS TO  IMPROVE  THE
 PREVENTION  AND  TREATMENT OF SICKLE CELL DISEASE AND SICKLE CELL TRAIT.
 THESE MECHANISMS SHALL:
   (I) COORDINATE THE SERVICE DELIVERY FOR INDIVIDUALS WITH  SICKLE  CELL
 DISEASE,  INCLUDING  THE  ESTABLISHMENT  OF  DAY HOSPITALS FOR THE ADULT
 SICKLE CELL DISEASE POPULATION;
   (II) PROVIDE GENETIC COUNSELING FOR SICKLE  CELL  DISEASE  AND  SICKLE
 CELL TRAIT;
   (III) PROVIDE BUNDLING OF TECHNICAL SERVICES RELATED TO THE PREVENTION
 AND TREATMENT OF SICKLE CELL DISEASE;
   (IV) IDENTIFY AND ESTABLISH OTHER EFFORTS RELATED TO THE EXPANSION AND
 COORDINATION  OF  EDUCATION,  TREATMENT, AND CONTINUITY OF CARE PROGRAMS
 FOR INDIVIDUALS WITH SICKLE CELL DISEASE AND SICKLE CELL TRAIT;
   (V) ESTABLISH OUTREACH TO THE COMMUNITY FOR SICKLE CELL DISEASE,  WITH
 EACH  PROGRAM PROVIDING FIFTY THOUSAND DOLLARS TO COMMUNITY BASED ORGAN-
 IZATIONS, WHERE AVAILABLE, OR FOR OTHER COMMUNITY OUTREACH;
   (VI) PROVIDE COORDINATION, TREATMENT AND EDUCATION  OF  MENTAL  HEALTH
 SERVICES FOR SICKLE CELL DISEASE PATIENTS AND THEIR FAMILIES;
   (VII) PROVIDE TRAINING OF HEALTH PROFESSIONALS AND LAY COMMUNITY;
   (VIII)  WORK ON AT LEAST TWO PROJECTS DESIGNATED AND AGREED BY ALL THE
 PROGRAMS TO BE COMMON TO ALL SICKLE CELL PATIENTS THROUGHOUT  THE  STATE
 AND  TWO  PROJECTS  IDENTIFIED BY EACH PROGRAM TO BE IMPORTANT TO SICKLE
 CELL DISEASE PATIENTS IN THAT REGION IN CONJUNCTION WITH THE  DEPARTMENT
 AND THE COORDINATING CENTER;
   (IX)  INCLUDE  ANY  OTHER PROVISION AS THE PROGRAM MAY DEEM NECESSARY;
 AND
   (X) EACH PROGRAM IS ENCOURAGED TO CONSIDER HAVING THE HOSPITAL  ADMIN-
 ISTRATION SIGN OFF ON SUPPORT OF THE PROGRAM AND HAVING A PLAN OF ACTION
 ON HOW THE HOSPITAL ADMINISTRATION WILL SUPPORT THE PROGRAM AND OUTREACH
 TO  THE  COMMUNITY. HOSPITAL ADMINISTRATION IS ALSO ENCOURAGED TO HAVE A
 PLAN FOR ENHANCED CARE, INCLUDING SUPPORT STAFF, FOR THIS PROGRAM.
   (E) THE COMMISSIONER SHALL CREATE ONE  STATEWIDE  COORDINATING  CENTER
 FOR  THE  PROGRAM FOR FIVE YEARS WITH FUNDING AT ONE MILLION DOLLARS FOR
 THE FIRST YEAR, AND FIVE HUNDRED THOUSAND DOLLARS FOR EACH  YEAR  THERE-
 AFTER.
   (I) THIS COORDINATING CENTER WOULD WORK WITH THE PREVENTION AND TREAT-
 MENT  OF SICKLE CELL DEMONSTRATION PROGRAMS TO ESTABLISH STATEWIDE GOALS
 FOR STANDARD OF CARE FOR SICKLE CELL DISEASE  PATIENTS  AND  THOSE  WITH
 SICKLE CELL TRAIT FOR ALL PROGRAMS TO ACHIEVE.
   (II)  THIS COORDINATING CENTER WOULD WORK WITH THE REGIONAL AND COMMU-
 NITY HOSPITAL PROGRAMS TO ESTABLISH GOALS  TO  EVALUATE  SPECIFIC  CHAL-
 LENGES THAT ARE SPECIFIC TO THAT REGION AND COMMUNITY HOSPITAL.
   (III)  THE  COORDINATING CENTER WOULD PROVIDE EDUCATION AND ASSISTANCE
 TO EACH PROGRAM TO CARRY OUT THESE GOALS.
   (IV) IT WILL COLLECT DATA AND MONITOR PROGRESS FROM  EACH  PROGRAM  TO
 INCLUDE  IN  A  SINGLE  REPORT TO THE STATE DUE ON THE FIRST OF JANUARY.
 THIS REPORT WILL NOT ONLY INCLUDE PROGRESS ON THE CARE, INCLUDING MENTAL
 HEALTH, AND QUALITY OF LIFE FOR SICKLE CELL DISEASE PATIENTS,  BUT  ALSO
 ON COST OF CARE, HIGHLIGHTING DECREASES IN COST COMPARED TO AT THE BASE-
 LINE YEAR BEFORE THE PROGRAMS ARE INITIATED.

 A. 6493                             5
 
   (V) IT WILL CONDUCT AND PAY FOR A MINIMUM OF TWO FACE TO FACE MEETINGS
 OF  PROGRAM  STAFF,  INCLUDING  PHYSICIANS,  NURSES,  SOCIAL WORKERS AND
 PATIENT REPRESENTATIVES AND HOSPITAL ADMINISTRATION (AT A MINIMUM), EACH
 YEAR.
   (F)  IN ORDER TO MAKE SURE THAT THE MAJORITY OF THE MONEY APPROPRIATED
 TO THESE PROGRAMS GOES TO PROGRAM ACTIVITIES,  INDIRECT  COSTS  WILL  BE
 LIMITED TO TEN PERCENT OF THE FUNDING PROGRAMS RECEIVE.
   §  5.  On or before the first of January, after the first full year of
 funding being awarded and thereafter each first  of  January  until  the
 completion  of  the grant cycle, the commissioner of health shall report
 to the governor, the speaker of the assembly and the temporary president
 of the senate on the impact that the prevention and treatment of  sickle
 cell disease demonstration programs have had on, but not limited to, the
 cost  of  care,  mental  health,  quality of life and identification and
 establishment of other efforts related to the expansion and coordination
 of education, treatment, and continuity of care programs for sickle cell
 disease patients and those with sickle cell trait.
   § 6. Because sickle cell  disease  is  the  most  costly  disease  per
 patient  to  the NYS Medicaid program, and so significant savings to the
 NYS Medicaid program can be achieved through sickle cell disease  demon-
 stration  programs,  the  sum  of three million dollars ($3,000,000) per
 year for five years will be appropriated ($1 million for the  coordinat-
 ing center with the rest evenly divided between the eight prevention and
 treatment of sickle cell disease demonstration programs in year one; for
 each  year  thereafter, $500,000 will go to the coordinating center with
 the rest evenly divided between 8 programs).
   § 7. Sickle cell disease demonstration programs shall  be  established
 throughout  the  state of New York and one statewide coordinating center
 for the prevention and treatment of sickle  cell  disease  demonstration
 program  shall  be  created  to collect data and monitor the progress of
 each demonstration project. The sum of one million dollars  ($1,000,000)
 will  be appropriated for the first year; for each year thereafter, five
 hundred thousand dollars ($500,000) shall be appropriated.
   § 8. The money would be appropriated to the department of  health  out
 of any moneys in the state treasury in the general fund to the credit of
 the  state  purposes  account  and  made  immediately available, for the
 purpose of carrying out the provisions of this act. Such moneys shall be
 payable on the audit and warrant of the comptroller on  vouchers  certi-
 fied  or approved by the commissioner of health in the manner prescribed
 by law.
   § 9. This act shall take effect immediately.