Memorializing Governor Kathy Hochul to proclaim May 8, 2026, as Thalassemia Awareness Day in the State of New York

Assembly Resolution No. 1310

BY: M. of A. Rules (Jensen)

        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        May 8, 2026, as Thalassemia  Awareness  Day  in  the
        State of New York

  WHEREAS,  It  is  the  custom  of this Legislative Body to recognize
official days that are set aside to increase awareness of serious health
conditions affecting the citizens of the State of New York; and

  WHEREAS, World Thalassemia Day is observed annually on May 8th as an
international awareness event dedicated to increasing  understanding  of
thalassemia  and promoting education, early detection, and improved care
for those affected; and

  WHEREAS,  Thalassemia  is  a  group  of  inherited  blood  disorders
characterized  by  the body's inability to produce sufficient amounts of
hemoglobin, the oxygen-carrying component of red blood cells,  which  is
composed of alpha and beta proteins; and

  WHEREAS,  When  the  body  does not produce adequate levels of these
proteins, red blood cells do not form properly and cannot  carry  enough
oxygen,  resulting  in chronic anemia that begins in early childhood and
persists throughout life; and

  WHEREAS, Individuals  born  with  clinically  significant  forms  of
thalassemia  often  require  lifelong  medical  care, including frequent
blood transfusions as often as every two weeks, which can lead  to  iron
overload  and  serious  complications affecting vital organs such as the
heart, liver, and kidneys; and

  WHEREAS,  Thalassemia  disproportionately  affects  individuals   of
Mediterranean,  Middle  Eastern,  African, South Asian, Southeast Asian,
Southern  Chinese,  Caribbean,  and  Latino  descent,   including   many
communities residing in New York State; and

  WHEREAS,  It is estimated that approximately 2,000,000 people in the
United  States,  including  residents  of  New  York  State,  carry  the
thalassemia trait, many of whom are unaware of their status; and

  WHEREAS,  As a hereditary condition passed from parents to children,
thalassemia presents significant  risks  when  both  parents  carry  the
trait,  with a one in four chance of having a child affected by a severe
form of the disease; and

  WHEREAS,  National  and  state-based  advocacy   organizations   are
actively  engaged in outreach efforts to support individuals living with
thalassemia and the healthcare providers who serve them,  including  the
dissemination of multilingual educational materials covering transfusion
guidelines,  the various forms of alpha and beta thalassemia, hemoglobin
variants, and the importance of genetic and prenatal testing; and

  WHEREAS, In New York State, where universal prenatal  screening  for
thalassemia  trait is not currently in place, these organizations play a
critical role by conducting  community  outreach,  forming  partnerships

with  community-based organizations and elected officials, participating
in  health  fairs,  and  leveraging  social  media  platforms  to  raise
awareness; and

  WHEREAS,  These  efforts also include maintaining patient registries
to collect essential epidemiological data  on  individuals  with  severe
thalassemia, addressing a gap in data collection at the city, state, and
national levels; and

  WHEREAS, Increasing public awareness, promoting early detection, and
supporting  ongoing  education  initiatives  are  essential to improving
outcomes and quality of life for individuals and  families  affected  by
thalassemia; now, therefore, be it

  RESOLVED,  That  this Legislative Body pause in its deliberations to
memorialize  Governor  Kathy  Hochul  to  proclaim  May  8,   2026,   as
Thalassemia Awareness Day in the State of New York; and be it further

  RESOLVED,  That  a  copy  of this Resolution, suitably engrossed, be
transmitted to The Honorable Kathy Hochul, Governor of the State of  New
York.