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

                                  2186

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                            January 14, 2013
                               ___________

Introduced  by  Sen.  ROBACH -- read twice and ordered printed, and when
  printed to be committed to the Committee on Health

AN ACT to amend the public health law and the social  services  law,  in
  relation  to providing that persons with hemophilia and other clotting
  protein deficiencies who are otherwise eligible for the  Child  Health
  Plus or Family Health Plus programs shall have access to reimbursement
  for  outpatient blood clotting factor concentrates and other necessary
  treatments and services

  THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND  ASSEM-
BLY, DO ENACT AS FOLLOWS:

  Section  1.    Legislative  findings.  Hemophilia is a rare hereditary
bleeding disorder resulting from a deficiency in blood proteins known as
clotting factors.  Without an adequate supply of clotting factors, indi-
viduals can experience prolonged bleeding following routine medical  and
dental  procedures,  trauma,  and  a range of physical activities. Addi-
tionally,  individuals  with  hemophilia  often  experience  spontaneous
internal  bleeding that can cause severe joint damage, chronic pain, and
even death.
  Prior to the 1970s, individuals with hemophilia  seldom  lived  beyond
the age of 30 years. Early treatment consisted of whole blood and plasma
transfusions at hospitals. These treatments were difficult, time consum-
ing  and  only  minimally effective. The advent of commercially prepared
blood clotting factors in the  1980s  represented  a  major  advance  in
treatment,  both in terms of efficacy and convenience. Most importantly,
these advances allowed for home infusion.
  In addition to hemophilia, there are several other disorders resulting
from blood protein deficiencies. These include  Von  Willebrand  Disease
(VWD),  the  most  common bleeding disorder, affecting approximately two
million Americans. Individuals with the severest form  of  VWD  rely  on
clotting  factor  treatments  similar  to those used by individuals with
hemophilia.

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD02168-01-3
              

S. 2186                             2

  Clotting factor products produced today (derived from plasma or recom-
binant technology) are  very  safe  and  highly  effective  medications.
Access  to  therapies  has  vastly improved both the health outcomes and
quality of life for the majority of patients and  their  families.  Many
patients  today  are  on  a  prophylactic  regimen  to  prevent bleeding
episodes. This preventative regimen together with the  coordinated  care
provided  by  hemophilia  treatment  centers  have significantly reduced
visits to emergency rooms, hospitalizations and joint  damage.  Further,
the ability to manage hemophilia and other bleeding disorders outside of
the  hospital  setting  have  helped  improve attendance for school-aged
children, decreased absenteeism from work for adult patients  and  care-
givers, vastly improved the ability of affected persons to join the work
force, and minimized life disruptions for the entire family.
  Presently,  New  York  state  is the only state in the U.S. preventing
access to lifesaving outpatient clotting factor products for individuals
that qualify for the State Children's Health Insurance Program.
  The legislature finds that having a policy  that  prohibits  otherwise
eligible  individuals  from  accessing  lifesaving  medications not only
violates the spirit of these very important programs,  it  discriminates
against  a  vulnerable  group of individuals whose health care costs are
deemed to be high and fundamentally  undermines  the  programs'  overall
goal  of  ensuring  that low-income children and families have access to
quality health care. The legislature further finds  that  costs  to  the
state  for  allowing  individuals  who  qualify for Child Health Plus or
Family Health Plus to access the outpatient clotting products  at  home,
the  recommended  model  of  care,  will be much less than the long-term
costs the state will very likely end  up  paying  through  the  Medicaid
program for individuals who later develop debilitating complications and
are deemed unable to work.
  This  legislation is intended to modify existing state law by allowing
for the coverage of lifesaving clotting factor products  prescribed  for
use  at home by persons with hemophilia and other clotting protein defi-
ciencies who are eligible for the Child Health  Plus  or  Family  Health
Plus program.
  S  2.  Subdivision  7  of  section  2510  of the public health law, as
amended by section 21 of part B of chapter 109 of the laws of  2010,  is
amended to read as follows:
  7.  "Covered  health care services" means: the services of physicians,
optometrists, nurses, nurse practitioners, midwives  and  other  related
professional  personnel  which  are  provided  on  an  outpatient basis,
including routine well-child visits; diagnosis and treatment of  illness
and injury; inpatient health care services; laboratory tests; diagnostic
x-rays;  prescription  and  non-prescription  drugs  and durable medical
equipment; radiation  therapy;  chemotherapy;  hemodialysis;  OUTPATIENT
BLOOD  CLOTTING  FACTOR  PRODUCTS  AND  OTHER  TREATMENTS  AND  SERVICES
FURNISHED IN CONNECTION WITH THE CARE  OF  HEMOPHILIA  AND  OTHER  BLOOD
CLOTTING   PROTEIN   DEFICIENCIES;   emergency  room  services;  hospice
services; emergency,  preventive  and  routine  dental  care,  including
medically necessary orthodontia but excluding cosmetic surgery; emergen-
cy, preventive and routine vision care, including eyeglasses; speech and
hearing  services;  and, inpatient and outpatient mental health, alcohol
and substance abuse services as defined by the commissioner in consulta-
tion with the superintendent. "Covered health care services"  shall  not
include  drugs,  procedures  and  supplies for the treatment of erectile
dysfunction when provided to, or prescribed for use by, a person who  is
required  to register as a sex offender pursuant to article six-C of the

S. 2186                             3

correction law, provided that any denial  of  coverage  of  such  drugs,
procedures  or  supplies  shall  provide  the  patient with the means of
obtaining additional information concerning  both  the  denial  and  the
means of challenging such denial.
  S 3. Paragraph a of subdivision 7 of section 2510 of the public health
law,  as  amended by chapter 526 of the laws of 2002, is amended to read
as follows:
  a. "Primary and preventive health care services" means:  the  services
of  physicians,  optometrists, nurses, nurse practitioners, midwives and
other related professional personnel which are provided on an outpatient
basis, including routine well-child visits; diagnosis and  treatment  of
illness  and  injury;  laboratory tests; diagnostic x-rays; prescription
drugs; radiation therapy; chemotherapy; hemodialysis;  OUTPATIENT  BLOOD
CLOTTING  FACTOR PRODUCTS AND OTHER TREATMENTS AND SERVICES FURNISHED IN
CONNECTION WITH THE CARE OF HEMOPHILIA AND OTHER BLOOD CLOTTING  PROTEIN
DEFICIENCIES; emergency room services; hospice services; and, outpatient
alcohol  and  substance abuse services as defined by the commissioner in
consultation with the superintendent.
  S 4. Subparagraphs (xv) and (xvi) of paragraph (e) of subdivision 1 of
section 369-ee of the social services law, subparagraph (xv) as  amended
and  subparagraph (xvi) as added by chapter 526 of the laws of 2002, are
amended and a new paragraph (xvii) is added to read as follows:
  (xv) services provided to meet the requirements of 42 U.S.C. 1396d(r);
[and]
  (xvi) hospice services[.]; AND
  (XVII) OUTPATIENT BLOOD CLOTTING FACTOR PRODUCTS AND OTHER  TREATMENTS
AND  SERVICES  FURNISHED  IN  CONNECTION WITH THE CARE OF HEMOPHILIA AND
OTHER BLOOD CLOTTING PROTEIN DEFICIENCIES AS DEFINED BY THE COMMISSIONER
OF HEALTH IN CONSULTATION WITH THE SUPERINTENDENT.
  S 5.  This act shall take effect on the first of April next succeeding
the date upon which it shall have become a law, provided that the amend-
ments to subdivision 7 of section 2510 of the public health law made  by
section two of this act shall be subject to the expiration and reversion
of such subdivision pursuant to subdivision 4 of section 47 of chapter 2
of  the  laws of 1998, as amended, when upon such date the provisions of
section three of this act shall take effect.