Bill Text: NY A06493 | 2019-2020 | General Assembly | Introduced

Bill Title: Furnishes preventive medicine to those with sickle cell, establishes prevention and treatment of sickle cell disease demonstration programs, and makes an appropriation thereto.

Spectrum: Strong Partisan Bill (Democrat 33-2)

Status: (Introduced) 2019-03-08 - referred to health [A06493 Detail]

Download: New_York-2019-A06493-Introduced.html

                STATE OF NEW YORK
                               2019-2020 Regular Sessions
                   IN ASSEMBLY
                                      March 8, 2019
        Introduced  by  M.  of  A.  HYNDMAN,  JEAN-PIERRE, BLAKE, BARRON, PERRY,
          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:
     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.
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.

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

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

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

        A. 6493                             5
     1    (v) It will conduct and pay for a minimum of two face to face meetings
     2  of  program  staff,  including  physicians,  nurses,  social workers and
     3  patient representatives and hospital administration (at a minimum), each
     4  year.
     5    (f)  In order to make sure that the majority of the money appropriated
     6  to these programs goes to program activities,  indirect  costs  will  be
     7  limited to ten percent of the funding programs receive.
     8    §  5.  On or before the first of January, after the first full year of
     9  funding being awarded and thereafter each first  of  January  until  the
    10  completion  of  the grant cycle, the commissioner of health shall report
    11  to the governor, the speaker of the assembly and the temporary president
    12  of the senate on the impact that the prevention and treatment of  sickle
    13  cell disease demonstration programs have had on, but not limited to, the
    14  cost  of  care,  mental  health,  quality of life and identification and
    15  establishment of other efforts related to the expansion and coordination
    16  of education, treatment, and continuity of care programs for sickle cell
    17  disease patients and those with sickle cell trait.
    18    § 6. Because sickle cell  disease  is  the  most  costly  disease  per
    19  patient  to  the NYS Medicaid program, and so significant savings to the
    20  NYS Medicaid program can be achieved through sickle cell disease  demon-
    21  stration  programs,  the  sum  of three million dollars ($3,000,000) per
    22  year for five years will be appropriated ($1 million for the  coordinat-
    23  ing center with the rest evenly divided between the eight prevention and
    24  treatment of sickle cell disease demonstration programs in year one; for
    25  each  year  thereafter, $500,000 will go to the coordinating center with
    26  the rest evenly divided between 8 programs).
    27    § 7. Sickle cell disease demonstration programs shall  be  established
    28  throughout  the  state of New York and one statewide coordinating center
    29  for the prevention and treatment of sickle  cell  disease  demonstration
    30  program  shall  be  created  to collect data and monitor the progress of
    31  each demonstration project. The sum of one million dollars  ($1,000,000)
    32  will  be appropriated for the first year; for each year thereafter, five
    33  hundred thousand dollars ($500,000) shall be appropriated.
    34    § 8. The money would be appropriated to the department of  health  out
    35  of any moneys in the state treasury in the general fund to the credit of
    36  the  state  purposes  account  and  made  immediately available, for the
    37  purpose of carrying out the provisions of this act. Such moneys shall be
    38  payable on the audit and warrant of the comptroller on  vouchers  certi-
    39  fied  or approved by the commissioner of health in the manner prescribed
    40  by law.
    41    § 9. This act shall take effect immediately.