03/01/2011 09:00 AM Senate STATE AFFAIRS

                  SCR  1-LUPUS AWARENESS MONTH                                                                              
                                                                                                                              
9:10:45 AM                                                                                                                    
CHAIR WIELECHOWSKI announced the next  order of business would be                                                               
SCR 1.                                                                                                                          
                                                                                                                                
SENATOR MEYER moved to adopt  committee substitute (CS) for SCR 1                                                               
( ), version 27-LS0099\B, as the working document.                                                                              
                                                                                                                                
9:12:41 AM                                                                                                                    
CHAIR WIELECHOWSKI objected for discussion purposes.                                                                            
                                                                                                                                
CELESTE  HODGE,  staff  to  Senator  Bettye  Davis,  said  SCR  1                                                               
designates May  as Lupus Awareness  Month, and it  encourages all                                                               
Alaskans  to  observe  Lupus  Awareness  Month  with  appropriate                                                               
activities  that provide  both education  and support  for people                                                               
diagnosed with lupus. Lupus is  a disease that affects the immune                                                               
system, causing inflammation and  tissue damage. Major gaps exist                                                               
in the  understanding of  the causes  and consequences  of lupus.                                                               
Lupus  can  affect any  body  part,  including the  skin,  lungs,                                                               
heart, kidney, and  brain. It can cause  seizures, strokes, heart                                                               
attacks, miscarriages,  and organ  failure. Lupus  strikes mostly                                                               
women of childbearing  age and women of color develop  lupus at a                                                               
rate  two to  three times  the rate  that Caucasians  develop the                                                               
disease. It  is difficult  to diagnose  because its  symptoms are                                                               
similar  to  other illnesses.  Each  year  the  month of  May  is                                                               
designated  as Lupus  Awareness  Month to  show  support for  the                                                               
estimated  1.5  million Americans  with  lupus.  More than  3,000                                                               
cases of lupus have been diagnosed  in Alaska in patients 20 - 87                                                               
years of  age. Ten  members of the  Lupus Foundation  of America,                                                               
Alaska Chapter,  recently passed away from  lupus. By designating                                                               
May as  Lupus Awareness Month,  Alaska will join other  states to                                                               
help  increase awareness  of  lupus and  show  support for  those                                                               
diagnosed with the disease.                                                                                                     
                                                                                                                                
SENATOR BETTYE  DAVIS, sponsor  of SCR  1, thanked  the committee                                                               
for hearing the bill.                                                                                                           
                                                                                                                                
CHAIR  WIELECHOWSKI asked  what changes  are in  the CS  from the                                                               
original version.                                                                                                               
                                                                                                                                
MS. HODGE answered that the year  2011 was removed, so that every                                                               
May is designated as Lupus Awareness Month.                                                                                     
                                                                                                                                
MARY  CRIMMINGS,  Lupus  Foundation   of  America,  testified  in                                                               
support of SCR  1. She said the Lupus Foundation  of America is a                                                               
national,  nonprofit health  organization that  conducts programs                                                               
of research,  education, and  advocacy. Lupus  is a  chronic auto                                                               
immune  disease in  which the  immune system  is out  of balance,                                                               
causing  inflammation and  tissue damage  to virtually  any organ                                                               
system.  Health  effects  can  include  heart  attacks,  strokes,                                                               
seizures,  miscarriages,  and  organ  failure.  Lupus  can  cause                                                               
significant disability as  well as death, and  currently there is                                                               
no cure.  It is  estimated that  1.5 million  Americans including                                                               
nearly  3,500 people  living in  Alaska  have lupus.  It is  nine                                                               
times more  common in women, and  two to three times  more common                                                               
among African  Americans, Hispanic Latinos, Asian  Americans, and                                                               
Native  Americans.  The  reason  for  this  disparity  remains  a                                                               
mystery.  In  2003 the  Lupus  Foundation  of America  stimulated                                                               
funding  for the  first  comprehensive  epidemiology through  the                                                               
Center for  Disease Control and  Prevention (CDC). This  study is                                                               
being  conducted  in  Alaska. Working  in  partnership  with  the                                                               
Indian Health  Service, the  CDC is  discovering how  many people                                                               
have lupus  and determining how  many new cases occur  each year.                                                               
This will  help researchers  and policy-makers  to gain  a better                                                               
understanding  of  the  individual  and  social  impacts  of  the                                                               
disease. Twenty-one  other states have already  begun the process                                                               
of declaring May as Lupus Awareness Month.                                                                                      
                                                                                                                                
ANNA  TILLMAN,   Executive  Director,  Lupus   Foundation  Alaska                                                               
Chapter, said they  are trying to educate  all Alaskans including                                                               
doctors  and  the medical  community  about  this disease.  Young                                                               
people are  affected, mostly women  in their  childbearing years.                                                               
People  struck by  this disease  can  become unable  to care  for                                                               
themselves.  Others  never  know  from  day  to  day  what  their                                                               
limitations  will be.  It can  attack the  lungs, brain,  and all                                                               
organs. Lupus can be very  debilitating as it affects all tissues                                                               
in the body.                                                                                                                    
                                                                                                                                
JUDY  POWELL,  Chairman  of  the  Board,  Alaska  Lupus  Chapter,                                                               
explained the  Alaska lupus problem.  In the United  States there                                                               
are more people  with lupus than with  multiple sclerosis, sickle                                                               
cell anemia,  and cystic  fibrosis combined.  Blacks are  at risk                                                               
three  to one,  and Alaska  Natives as  well as  other minorities                                                               
including  Asians  and  Hispanics  are  at risk  two  to  one  to                                                               
Caucasians. Symptoms  can be as mild  as a rash or  as extreme as                                                               
kidney failure. The  Anchorage office is the only  one in Alaska.                                                               
It is important,  because we are so isolated here,  to spread the                                                               
word on a regular basis.                                                                                                        
                                                                                                                                
CHRISTY BAUMGARTNER testified  in support of SCR 1  and said that                                                               
she has a family member with lupus.                                                                                             
                                                                                                                                
CHAIR WIELECHOWSKI closed public testimony on SCR 1.                                                                            
                                                                                                                                
SENATOR DAVIS  gave final  comments on  the resolution.  She said                                                               
that the people  involved are all volunteers, and  they work very                                                               
hard. They have a fundraising walk  once a year, but they work at                                                               
this all year long.                                                                                                             
                                                                                                                                
CHAIR  WIELECHOWSKI said  SCR 1  would be  set aside  for further                                                               
hearing.