,,ii  #aaith ,,congress  #ast ,session  
,s4 #gba  ,,in ,,the ,,senate ,,of ,,the
 ,,united ,,states  ,february #be1      
#bjbe,mr4 ,booker 7for himself and ,mr4 
,scott of ,south ,carolina7 introduced  
the following bill2 which was read twice
 and referred to the ,committee on      
,finance  ,a ,,bill  ,to amend title    
,,xix of the ,social ,security ,act to  
establish a demonstration project to    
improve outpatient clinical care for    
individuals with sickle cell disease4   
#a4 ,short title ,this ,act may be cited
 as the ,sickle ,cell ,disease          
,comprehensive ,care ,act4  #b4         
,enabling ,state ,medicaid programs to  
provide care through health homes to    
individuals with sickle cell disease    
,section #aide of the ,social ,security 
,act 7#db ,u4,s4,c4 #acifw-#d7 is       
amended-- 7#a7 in subsection 7a71 by    
inserting 7and1 beginning ,january #a1  
#bjbf1 to eligible individuals with     
sickle cell disease 7as defined in      
subsection 7c77#e777 after chronic      

conditions2  7#b7 in subsection 7c7--   
7,a7 in paragraph 7#a71 by inserting and
 each eligible individual with sickle   
cell disease after chronic conditions2  
and  7,b7 by adding at the end the      
following new paragraph3  7#e7 ,special 
rule relating to sickle cell disease    
health homes  7,a7 ,in general          
,beginning ,january #a1 #bjbf1 the      
,secretary may approve a ,state plan    
amendment under this section that is    
designed to provide health home services
 primarily to eligible individuals with 
sickle cell disease 7in this section    
referred to as a sickle cell            
disease-focused ,state plan amendment74 
7,b7 ,requirement to provide dental and 
vision services ,in the case of a sickle
 cell disease-focused ,state plan       
amendment approved by the ,secretary on 
or after ,january #a1 #bjbf1 a ,state   
shall ensure the provision of dental and
 vision services to eligible individuals
 with sickle cell disease who are       
enrolled in such health home4 ,such     

requirement shall apply irrespective of 
existing requirements related to        
comparability or whether or not the     
,state provides dental or vision        
services to other ,medicaid             
beneficiaries4  7,c7 ,report            
requirements  7i7 ,in general ,in the   
case of a ,state with a sickle cell     
disease-focused ,state plan amendment1  
such ,state shall1 at the end of the    
first #h fiscal year quarters that such 
,state plan amendment is in effect1     
submit to the ,secretary a report on the
 following1 with respect to eligible    
individuals with sickle cell disease    
provided health home services under such
 ,state plan amendment3 7,i7 ,the       
quality of health care provided to such 
individuals1 with a focus on outcomes   
relevant to the recovery of each such   
individual4  7,,ii7 ,the access of such 
individuals to health care4  7,,iii7    
,the total expenditures of such         
individuals for health care4  7ii7      
,applicable measures ,for purposes of   

the report required under this          
subparagraph1 the ,secretary shall      
specify all applicable measures for     
determining quality of health care      
provided to eligible individuals with   
sickle cell disease1 access to health   
care by such individuals1 and           
expenditures on health care by such     
individuals4  7,d7 ,best practices ,not 
later than ,june #cj1 #bjbf1 the        
,secretary shall make publicly available
 on the website of the ,centers for     
,medicare  ,medicaid ,services best     
practices for designing and implementing
 a sickle cell disease-focused ,state   
plan amendment1 based on clinical       
practice guidelines for sickle cell     
disease developed by medical specialty  
societies and in consultation with      
sickle cell disease providers and       
patient advocacy organizations4  7,e7   
,definitions ,for purposes of this      
section3 7i7 ,eligible individual with  
sickle cell disease ,the term eligible  
individual with sickle cell disease     

means1 with respect to a ,state1 an     
individual who satisfies all of the     
following3 7,i7 ,the individual is      
eligible for medical assistance under   
the ,state plan or under a waiver of    
such plan4  7,,ii7 ,the individual has  
sickle cell disease4  7,,iii7 ,the      
individual may or may not have          
previously received health home services
 under any other ,state plan amendment  
approved for the ,state under this      
section by the ,secretary4  7ii7 ,sickle
 cell disease ,the term sickle cell     
disease means an inherited blood        
disorder affecting red blood cells that 
occurs when an individual has inherited 
a sickle cell gene from each parent1 as 
identified by a newborn screening or    
other genetic test4  2 and  7#c7 in     
subsection 7h77#e71 by inserting or a   
health home for eligible individuals    
with sickle cell disease after chronic  
conditions4