Bill Text: NY K02438 | 2023-2024 | General Assembly | Introduced

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Bill Title: Memorializing Governor Kathy Hochul to proclaim October 25-31, 2024, as Epidermolysis Bullosa Awareness Week in the State of New York, more commonly known as Butterfly Children Awareness Week

Spectrum: Slight Partisan Bill (Democrat 19-12)

Status: (Passed) 2024-06-06 - adopted [K02438 Detail]

Download: New_York-2023-K02438-Introduced.html

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Assembly Resolution No. 2438

BY: M. of A. Rules (Rosenthal L)

        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        October  25-31,  2024,  as   Epidermolysis   Bullosa
        Awareness  Week  in  the  State  of  New  York, more
        commonly known as Butterfly Children Awareness Week

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

  WHEREAS,  It  is  the  sense of this Legislative Body to memorialize
Governor Kathy Hochul to proclaim October 25-31, 2024, as  Epidermolysis
Bullosa  Awareness Week in the State of New York, more commonly known as
Butterfly  Children  Awareness  Week,  in  an  effort  to  raise  public
awareness and understanding of Epidermolysis Bullosa; and

  WHEREAS,  Epidermolysis  Bullosa (EB) is a rare, genetic, connective
tissue disorder that is characterized  by  fragile  skin  and  recurrent
blister formation, inside and outside the body; today, there is no cure;
and

  WHEREAS,  Severe  forms  of  EB cause patients to live with constant
pain and scarring; the worst forms of EB lead to eventual disfigurement,
disability and often early death; phenotypes and outcomes run the gamut,
from mild to severe; the more severe cases cause fatalities in the first
year of life, and in many cases,  children  who  suffer  from  the  more
severe forms do not live into their third decade of life; and

  WHEREAS, There are five types of EB: EB simplex (EBS), Junctional EB
(JEB), Dystrophic EB (DEB), Kindler EB (KEB) and EB Acquisita (EBA); EBS
is the most common form of EB, while the other forms are relatively less
common and affect the patient more severely; and

  WHEREAS,  The  presence and type of EB is differentiated by the gene
that is affected, and the particular protein that is  produced  by  that
gene,  therefore,  EB  can  be  the  result  of a mutation in genes that
produce one of 18 different structural proteins; and

  WHEREAS, It has been estimated that one out  of  every  20,000  live
births which is approximately 200 children a year, is affected with some
type  of  EB;  the  disorder  occurs  in  every  racial and ethnic group
throughout the world and affects both sexes equally; and

  WHEREAS, The only treatment for EB is daily wound care, preventative
bandaging and pain management; the simple act of bathing is  a  tortuous
process  that  may  take  more  than three hours when children are often
bathed in a diluted bleach or vinegar solution to fight the ever present
threat of infection; and

  WHEREAS, EB has a long list  of  secondary  complications  including
anemia,  growth retardation, infection, bacterial sepsis, renal failure,
cardiomyopathy, corneal abrasions, malnutrition, premature  tooth  decay
and squamous cell carcinoma; and

  WHEREAS,  With  skin as fragile as a butterfly wing, EB patients are
dubbed "Butterfly Children"; on the  outside,  physical  wounds  prevent
them  from  normal  daily  activities  enjoyed  by  other  children; the
slightest friction produces agonizing wounds that can cover up to 75% of
their bodies; and

  WHEREAS,  There is a frightening lack of institutional knowledge; in
other  words,  most  physicians,  nationally  and  internationally,  are
unaware  of  the  disorder  and its complexities, thus resulting in less
than optimal treatment  options  for  even  the  most  common  secondary
complications; and

  WHEREAS,  Due  to public and private insurance coverage limitations,
caregivers may lack adequate wound care supplies that are  essential  in
not  only  preventing  infection  and supporting wound closure, but also
preventing  new  wounds  from  everyday  activities,  such  as   wearing
clothing; many surgical procedures are only performed safely in three or
four hospitals in the United States; and

  WHEREAS,  Researchers  from  around  the globe are investigating new
therapies to treat and cure EB, thereby leading to a better  quality  of
life; and

  WHEREAS,  It is imperative that there be greater public awareness of
this serious health issue, and more must be done to increase activity at
the local, State and national levels to support the patients as well  as
their families; now, therefore, be it

  RESOLVED,  That  this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim October  25-31,  2024,  as
Epidermolysis  Bullosa  Awareness  Week  in  the State of New York, more
commonly known as Butterfly Children Awareness Week; 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.