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.