S02281 Summary:

BILL NOS02281
 
SAME ASSAME AS A06493
 
SPONSORSANDERS
 
COSPNSRBAILEY, COMRIE, GIANARIS, HARCKHAM, KENNEDY, KRUEGER, MAYER, METZGER, MONTGOMERY, MYRIE, PARKER, PERSAUD, RAMOS, SALAZAR, SEPULVEDA, STAVISKY
 
MLTSPNSR
 
Amd §365, Soc Serv L; add Art 31 Title 4 §3126, Pub Health L
 
Furnishes preventive medicine to those with sickle cell, establishes prevention and treatment of sickle cell disease demonstration programs, and makes an appropriation thereto.
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S02281 Actions:

BILL NOS02281
 
01/23/2019REFERRED TO FINANCE
01/08/2020REFERRED TO FINANCE
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S02281 Committee Votes:

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S02281 Floor Votes:

There are no votes for this bill in this legislative session.
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S02281 Text:



 
                STATE OF NEW YORK
        ________________________________________________________________________
 
                                          2281
 
                               2019-2020 Regular Sessions
 
                    IN SENATE
 
                                    January 23, 2019
                                       ___________
 
        Introduced  by Sens. SANDERS, BAILEY, KRUEGER, PARKER, PERSAUD, SEPULVE-
          DA, STAVISKY -- read twice and ordered printed, and when printed to be
          committed to the Committee on Finance
 
        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:
 
     1    Section  1.  This  act  shall be known and may be cited as the "Sickle
     2  Cell Treatment Act of 2019".
     3    § 2. Legislative findings. The legislature hereby finds  and  declares
     4  the following:
     5    (1)  Sickle  cell  disease  (SCD) is an inherited disease of red blood
     6  cells and the CDC (Centers for Disease Control) states  that  SCD  is  a
     7  major  public  health  concern.  Approximately 1,000 American babies are
     8  born with the disease each year, while globally 500,000 babies are  born
     9  annually with the disease.
    10    (2) Sickle cell disease affects approximately 100,000 Americans and is
    11  most  common in African-Americans as well as those of Hispanic, Mediter-
    12  ranean and Middle Eastern ancestry. Nationally, SCD occurs  in  approxi-
    13  mately  1:500  African-Americans, 1:36,000 Hispanics and 1:80,000 Cauca-
    14  sians. However, in NYS (New York State) SCD occurs in 1:230 live  births
    15  to  non-Hispanic  black  mothers, 1:2,320 births to Hispanic mothers and
    16  1:41,647 Caucasian mothers.
    17    (3) Approximately 10% of SCD patients reside in NYS. In  NYS,  1:1,146
    18  live  births  have  sickle  cell  disease,  with  12% of NYS sickle cell
    19  disease births in the Hispanic population. Higher birth  rates  for  SCD
    20  occur  in mothers who were born outside of the US. In NYS, approximately
    21  80% of sickle cell disease patients live in the NYC area.
    22    (4) Sickle cell disease is the most costly disease per patient to  NYS
    23  Medicaid,  costing  $15,000/year/patient.  Despite this, NYS only spends

         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD05436-01-9

        S. 2281                             2
 
     1  about $250,000/year to help improve care and decrease the costs of care.
     2  This has decreased from  approximately  $500,000  in  2001.  Most  adult
     3  patients  are  either  not  in care with a hematologist or not receiving
     4  appropriate  disease modifying medications - despite the medical litera-
     5  ture which shows costs can be decreased while increasing quality of life
     6  for sickle cell disease patients when in care. With a  minimal  decrease
     7  in  cost of care/patient of approximately 3%, NYS Medicaid could achieve
     8  approximately $4-5,000,000 in savings. This would more  than  compensate
     9  for the cost of the program ($3,000,000).
    10    (5)  Persons  with  sickle cell trait (SCT) are carriers of the sickle
    11  cell gene who have inherited the normal hemoglobin gene from one  parent
    12  and  the  sickle  cell  gene  from the other parent. More than 3,000,000
    13  Americans, mostly African-Americans, have SCT. Sickle cell trait is  not
    14  a  disease, but when both parents have SCT there is a 1 in 4 chance with
    15  each pregnancy that the child will be born with SCD.  However,  SCT  has
    16  its own subtle complications, and can also be deadly.
    17    (6) Because SCD is a blood disorder and blood goes to all parts of the
    18  body,  people  with  SCD  may  exhibit complications in all parts of the
    19  body. This includes, but is not  limited  to,  frequent  pain  episodes,
    20  entrapment of blood within the spleen, severe anemia, acute lung compli-
    21  cations (acute chest syndrome), priapism in males and other life-threat-
    22  ening  conditions.  These  life-threatening  complications  can  develop
    23  rapidly, including infections of  the  blood  (sepsis),  meningitis  and
    24  stroke.  Stroke  can  be  either  silent (no overt symptoms) or clinical
    25  (with symptoms) and can affect children as young as 18 months of age. Up
    26  to 40% of children will have had either a silent or clinical  stroke  by
    27  the  age  of 18 years. This impacts their ability to learn and/or hold a
    28  job.
    29    (7) Sickle cell disease is a cumulative disease with worsening compli-
    30  cations and  organ  damage,  including  lungs,  heart  and  kidneys,  as
    31  patients  age.  In  addition,  with the toll of the disease on patients,
    32  particularly their brain, mental health issues are  extremely  important
    33  to the sickle cell disease patient and family. The median life expectan-
    34  cy  for  SCD  is  about 45 years. While some patients can remain without
    35  symptoms for years, many others may not survive childhood or  the  early
    36  adult years.
    37    (8) As a complex disease with multisystem manifestations, SCD requires
    38  specialized comprehensive and continuous care to achieve the best possi-
    39  ble  outcomes.  Newborn  screening, genetic counseling with education of
    40  patients, family members, schools and health care providers are critical
    41  preventative measures. These decrease morbidity and mortality, delay  or
    42  prevent  complications,  reduce  emergency  room  visits  and in-patient
    43  hospital stays, and decrease overall costs of care.
    44    (9) Day hospitals, where patients can seek treatment as an  outpatient
    45  avoiding  overburdened emergency rooms and hospitalizations, for as long
    46  as 8 hours have consistently proven in  peer  reviewed  publications  to
    47  improve  care  and decrease costs in both the pediatric and adult sickle
    48  cell population. Yet despite this evidence, few day hospitals exist  for
    49  adult sickle cell disease patients.
    50    (10)  In  addition to specialized care and support from medical staff,
    51  hospital administrations need to  understand  the  importance  of  their
    52  support  of the medical staff and need for the medical and support staff
    53  in multiple medical subspecialities in order to provide  the  comprehen-
    54  sive  care  that  patients  need.  As  well, insurance companies need to
    55  understand that these patients require complicated medical care to  stay
    56  healthy  and provide the correct and adequate financial support to allow

        S. 2281                             3
 
     1  the hiring of appropriate support staff as well as adequately compensate
     2  the medical staff for the increased  hours  it  takes  to  manage  these
     3  complex patients.
     4    (11)  Community  based  organizations  provide  a  valuable service in
     5  educating their communities about sickle cell  disease  and  trait,  and
     6  because  they  act  as  a  bridge  between the treatment centers and the
     7  community should be included whenever possible in any program to improve
     8  care to the community.
     9    The legislature declares its intent to develop and establish  systemic
    10  mechanisms  to  improve  the  treatment  and  prevention  of sickle cell
    11  disease.
    12    § 3. Section 365 of the social services law is amended by adding a new
    13  subdivision 13 to read as follows:
    14    13. Any inconsistent provision of this chapter or other  law  notwith-
    15  standing,  the  department  shall  be responsible for furnishing medical
    16  assistance for preventative medical strategies,  including  prophylaxis,
    17  treatment  and  services  for  eligible individuals who have sickle cell
    18  disease. For the purposes of  this  subdivision,  "preventative  medical
    19  strategies, treatment and services" shall include, but not be limited to
    20  the following:
    21    (a) chronic blood transfusion (with deferoxamine chelation) to prevent
    22  stroke  in individuals with sickle cell disease who have been identified
    23  as being at high risk for stroke;
    24    (b) genetic counseling and testing for individuals  with  sickle  cell
    25  disease or the sickle cell trait; or
    26    (c) other treatment and services to prevent individuals who have sick-
    27  le cell disease and who have had a stroke from having another stroke.
    28    §  4.  Article  31 of the public health law is amended by adding a new
    29  title 4 to read as follows:
    30                                  TITLE IV
    31    PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM
    32  Section 3126. Prevention and treatment of  sickle  cell  disease  demon-
    33                  stration program.
    34    §  3126. Prevention and treatment of sickle cell disease demonstration
    35  program. 1. The commissioner shall create prevention  and  treatment  of
    36  sickle  cell  disease  demonstration  programs  throughout  the state to
    37  implement care for sickle cell disease patients based on common problems
    38  faced throughout the state as well as  regional  or  local  issues  that
    39  affect the sickle cell disease patient population.  These programs would
    40  not  only  evaluate  impact  of care and quality of life on their sickle
    41  cell disease patients, but also track the costs and cost savings  occur-
    42  ring with implemented changes.
    43    2.  The purpose of the prevention and treatment of sickle cell disease
    44  demonstration programs would be to develop and establish systemic  mech-
    45  anisms  to  improve  the prevention and treatment of sickle cell disease
    46  and sickle cell trait in New York state.
    47    (a)  The  commissioner  shall  create  and  conduct   eight   regional
    48  prevention  and  treatment of sickle cell disease demonstration programs
    49  for both pediatric and adult care and sickle cell  trait  education  for
    50  five years.
    51    (b)  The  regional  programs shall be established based on sickle cell
    52  disease demographics in the state of New York, to serve  individuals  in
    53  downstate cities, including New York city, and upstate cities, including
    54  Buffalo, Rochester, and Albany. Where a higher concentration of programs
    55  will be in the New York city area.

        S. 2281                             4
 
     1    (c)  Since  many  of  the sickle cell disease patients in the New York
     2  city area are treated in community hospitals, at least two  of  the  New
     3  York city area programs will be in community hospitals.
     4    (d)  These  prevention  and  treatment  of  sickle  cell demonstration
     5  programs will develop and establish systemic mechanisms to  improve  the
     6  prevention  and  treatment of sickle cell disease and sickle cell trait.
     7  These mechanisms shall:
     8    (i) coordinate the service delivery for individuals with  sickle  cell
     9  disease,  including  the  establishment  of  day hospitals for the adult
    10  sickle cell disease population;
    11    (ii) provide genetic counseling for sickle  cell  disease  and  sickle
    12  cell trait;
    13    (iii) provide bundling of technical services related to the prevention
    14  and treatment of sickle cell disease;
    15    (iv) identify and establish other efforts related to the expansion and
    16  coordination  of  education,  treatment, and continuity of care programs
    17  for individuals with sickle cell disease and sickle cell trait;
    18    (v) establish outreach to the community for sickle cell disease,  with
    19  each  program providing fifty thousand dollars to community based organ-
    20  izations, where available, or for other community outreach;
    21    (vi) provide coordination, treatment and education  of  mental  health
    22  services for sickle cell disease patients and their families;
    23    (vii) provide training of health professionals and lay community;
    24    (viii)  work on at least two projects designated and agreed by all the
    25  programs to be common to all sickle cell patients throughout  the  state
    26  and  two  projects  identified by each program to be important to sickle
    27  cell disease patients in that region in conjunction with the  department
    28  and the coordinating center;
    29    (ix)  include  any  other provision as the program may deem necessary;
    30  and
    31    (x) each program is encouraged to consider having the hospital  admin-
    32  istration sign off on support of the program and having a plan of action
    33  on how the hospital administration will support the program and outreach
    34  to  the  community. Hospital administration is also encouraged to have a
    35  plan for enhanced care, including support staff, for this program.
    36    (e) The commissioner shall create one  statewide  coordinating  center
    37  for  the  program for five years with funding at one million dollars for
    38  the first year, and five hundred thousand dollars for each  year  there-
    39  after.
    40    (i) This coordinating center would work with the prevention and treat-
    41  ment  of sickle cell demonstration programs to establish statewide goals
    42  for standard of care for sickle cell disease  patients  and  those  with
    43  sickle cell trait for all programs to achieve.
    44    (ii)  This coordinating center would work with the regional and commu-
    45  nity hospital programs to establish goals  to  evaluate  specific  chal-
    46  lenges that are specific to that region and community hospital.
    47    (iii)  The  coordinating center would provide education and assistance
    48  to each program to carry out these goals.
    49    (iv) It will collect data and monitor progress from  each  program  to
    50  include  in  a  single  report to the state due on the first of January.
    51  This report will not only include progress on the care, including mental
    52  health, and quality of life for sickle cell disease patients,  but  also
    53  on cost of care, highlighting decreases in cost compared to at the base-
    54  line year before the programs are initiated.
    55    (v) It will conduct and pay for a minimum of two face to face meetings
    56  of  program  staff,  including  physicians,  nurses,  social workers and

        S. 2281                             5
 
     1  patient representatives and hospital administration (at a minimum), each
     2  year.
     3    (f)  In order to make sure that the majority of the money appropriated
     4  to these programs goes to program activities,  indirect  costs  will  be
     5  limited to ten percent of the funding programs receive.
     6    §  5.  On or before the first of January, after the first full year of
     7  funding being awarded and thereafter each first  of  January  until  the
     8  completion  of  the grant cycle, the commissioner of health shall report
     9  to the governor, the speaker of the assembly and the temporary president
    10  of the senate on the impact that the prevention and treatment of  sickle
    11  cell disease demonstration programs have had on, but not limited to, the
    12  cost  of  care,  mental  health,  quality of life and identification and
    13  establishment of other efforts related to the expansion and coordination
    14  of education, treatment, and continuity of care programs for sickle cell
    15  disease patients and those with sickle cell trait.
    16    § 6. Because sickle cell  disease  is  the  most  costly  disease  per
    17  patient  to  the NYS Medicaid program, and so significant savings to the
    18  NYS Medicaid program can be achieved through sickle cell disease  demon-
    19  stration  programs,  the  sum  of three million dollars ($3,000,000) per
    20  year for five years will be appropriated ($1 million for the  coordinat-
    21  ing center with the rest evenly divided between the eight prevention and
    22  treatment of sickle cell disease demonstration programs in year one; for
    23  each  year  thereafter, $500,000 will go to the coordinating center with
    24  the rest evenly divided between 8 programs).
    25    § 7. Sickle cell disease demonstration programs shall  be  established
    26  throughout  the  state of New York and one statewide coordinating center
    27  for the prevention and treatment of sickle  cell  disease  demonstration
    28  program  shall  be  created  to collect data and monitor the progress of
    29  each demonstration project. The sum of one million dollars  ($1,000,000)
    30  will  be appropriated for the first year; for each year thereafter, five
    31  hundred thousand dollars ($500,000) shall be appropriated.
    32    § 8. The money would be appropriated to the department of  health  out
    33  of any moneys in the state treasury in the general fund to the credit of
    34  the  state  purposes  account  and  made  immediately available, for the
    35  purpose of carrying out the provisions of this act. Such moneys shall be
    36  payable on the audit and warrant of the comptroller on  vouchers  certi-
    37  fied  or approved by the commissioner of health in the manner prescribed
    38  by law.
    39    § 9. This act shall take effect immediately.
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