02/21/2012 03:00 PM House HEALTH & SOCIAL SERVICES

                  SCR 1-LUPUS AWARENESS MONTH                                                                               
                                                                                                                                
3:20:14 PM                                                                                                                    
                                                                                                                                
CHAIR KELLER announced  that the next order of  business would be                                                               
CS FOR  SENATE CONCURRENT RESOLUTION NO.  1(STA), Designating May                                                               
of each year as Lupus Awareness Month.                                                                                          
                                                                                                                                
3:20:40 PM                                                                                                                    
                                                                                                                                
CELESTE  HODGE,   Staff,  Senator  Bettye  Davis,   Alaska  State                                                               
Legislature,  reported  that proposed  SCR  1  designated May  as                                                               
Lupus  Awareness Month,  and encouraged  Alaskans to  observe the                                                               
month with  appropriate activities  which provided  education and                                                               
support for  those diagnosed with  the disease.  She  pointed out                                                               
that  Lupus was  a disease  which affected  the immune  system by                                                               
causing inflammation  and tissue  damage, although there  was not                                                               
total  understanding  of  the  causes  and  consequences  of  the                                                               
disease.   She shared that  Lupus can  affect any body  part, and                                                               
can  cause seizure,  strokes,  heart  attacks, miscarriages,  and                                                               
organ failure.   She noted  that it  most often strikes  women of                                                               
child bearing  age, with women  of color developing Lupus  at 2-3                                                               
times the  rate of Caucasians.   She declared the  difficulty for                                                               
diagnosis  as  its  symptoms  were  similar  to  those  of  other                                                               
illnesses,  and  that  the treatment  could  have  damaging  side                                                               
effects.   She confirmed  that each May  was designated  as Lupus                                                               
Awareness Month  to show  support for  the 1.5  million Americans                                                               
with Lupus.   She stated  that more  than 3000 Alaskans  had been                                                               
diagnosed with Lupus.  She declared  that SCR 1 would join Alaska                                                               
with  other states  in support  of an  increase for  awareness to                                                               
Lupus.                                                                                                                          
                                                                                                                                
3:22:55 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE  SEATON, directing  attention to  page 2,  line 8,                                                               
asked to clarify the age range for Lupus.                                                                                       
                                                                                                                                
3:23:23 PM                                                                                                                    
                                                                                                                                
MS. HODGE replied that age 10 was more accurate.                                                                                
                                                                                                                                
3:24:08 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE MILLETT asked about treatments for Lupus.                                                                        
                                                                                                                                
3:24:24 PM                                                                                                                    
                                                                                                                                
MS.  HODGE   replied  that  a   representative  from   the  Lupus                                                               
Foundation of America would explain the specific treatments.                                                                    
                                                                                                                                
3:24:44 PM                                                                                                                    
                                                                                                                                
CHAIR KELLER opened public testimony.                                                                                           
                                                                                                                                
3:24:52 PM                                                                                                                    
                                                                                                                                
ANNA TILLMAN,  Executive Director,  Lupus Foundation  of America,                                                               
Alaska Chapter, stated  that Lupus was a breakdown  of the immune                                                               
system,  not   allowing  the  body  to   fight  against  viruses,                                                               
bacteria, and germs.   She stated that Lupus  was not contagious,                                                               
that 90  percent of those  with Lupus  were females, and  that it                                                               
was  unpredictable, and  potentially fatal.   Although  the cause                                                               
was still  unknown, she  listed some  factors that  could trigger                                                               
the genes prone to the  disease, including infection, ultraviolet                                                               
light, extreme stress, certain  prescription drugs, and hormones.                                                               
She described  some of  the different  types of  lupus, including                                                               
cutaneous  Lupus,  drug  induced  Lupus,  and  the  most  common,                                                               
systemic Lupus, which  affected the internal organs.   She listed                                                               
people of color  as being affected more than twice  as often than                                                               
Caucasians,  with  more than  5  percent  of offspring  of  Lupus                                                               
suffers also  having Lupus.   She noted that currently  there was                                                               
no generic screening test to  determine the development of Lupus,                                                               
adding that  it would often  take 3-5  years to diagnose,  as the                                                               
symptoms could come and go over  time.  She stated that there was                                                               
no single laboratory  test to determine Lupus, and  that it could                                                               
often strike between  15 and 44 years of age.   She reported that                                                               
the average annual  cost to a person with Lupus  was $12,643, and                                                               
that  successful  treatment  often   required  a  combination  of                                                               
medications.  She  noted that fatigue was a symptom  in almost 80                                                               
percent  of cases.    She  detailed some  of  the medications  to                                                               
include:   steroids,  an anti-malarial,  and non-steroidal  anti-                                                               
inflammatories.   She stated  that it had  taken almost  21 years                                                               
for her diagnosis, and that she had permanent damage from Lupus.                                                                
                                                                                                                                
3:30:06 PM                                                                                                                    
                                                                                                                                
CHAIR KELLER asked for the number of cases in Alaska.                                                                           
                                                                                                                                
MS. TILLMAN replied that it was  estimated to be about 3,000.  In                                                               
response  to Chair  Keller, she  agreed  that the  age range  for                                                               
affliction, 10-87 years, was accurate.                                                                                          
                                                                                                                                
3:31:29 PM                                                                                                                    
                                                                                                                                
SARA CHANG,  Government Relations,  Lupus Foundation  of America,                                                               
Inc., National Office,  shared that raising awareness  was one of                                                               
the  largest priorities  for the  Lupus Foundation.   She  stated                                                               
that almost  1.5 million  Americans, about 1  in 181  people, had                                                               
some  form of  Lupus,  and almost  90 percent  were  women.   She                                                               
reported   that  Lupus   could   strike   without  warning,   had                                                               
unpredictable effects, and had no  known cause or cure, making it                                                               
difficult  to diagnose.   She  shared that  the average  time for                                                               
diagnosis  was four  years.   She declared  that SCR  1 would  be                                                               
beneficial for Alaskan education and  awareness to the effects of                                                               
Lupus.  She  stated that the direct and indirect  cost to America                                                               
from Lupus was about $31 billion.                                                                                               
                                                                                                                                
3:35:12 PM                                                                                                                    
                                                                                                                                
CHAIR KELLER closed public testimony.                                                                                           
                                                                                                                                
3:35:47 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE  DICK   moved  to  report  CSSCR   1(STA)  out  of                                                               
committee  with individual  recommendations and  the accompanying                                                               
zero fiscal  note.   There being no  objection, CSSCR  1(STA) was                                                               
reported  from  the House  Health  and  Social Services  Standing                                                               
Committee.