,,ii  #aagth ,,congress  #ast ,session  
,s4 #cchi  ,,in ,,the ,,senate ,,of     
,,the ,,united ,,states  ,december #ad1 
#bjba,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         
,medicaid demonstration project to      
improve outpatient clinical care for    
individuals with sickle cell disease    
,section #aijc of the ,social ,security 
,act 7#db ,u4,s4,c4 #acif;b7 is amended 
by adding at the end the following new  
subsection3  7cc7 ,demonstration project
 ,to improve outpatient clinical care   
for individuals with sickle cell disease
  7#a7 ,in general ,notwithstanding     

section #aijb7;a77#a7 7relating to      
statewideness71 section                 
#aijb7;a77#aj77;,b7 7relating to        
comparability71 and any other provision 
of this title for which the ,secretary  
determines it is necessary to waive in  
order to implement this subsection1 not 
later than the date that is #a year     
after the date of the enactment of this 
subsection1 the ,secretary shall1 in    
consultation1 as appropriate1 with the  
,administrator of the ,health ,resources
 and ,services ,administration1 the     
,director of the ,agency for ,healthcare
 ,research and ,quality1 and the ,deputy
 ,assistant ,secretary for ,minority    
,health1 conduct a #e-year demonstration
 project 7referred to in this subsection
 as the demonstration project7 for the  
purpose described in paragraph 7#b7     
under which the ,secretary shall-- 7,a7 
for the first #ah-month period of such  
project1 award planning grants described
 in paragraph 7#c72 and  7,b7 for the   
remaining #db-month period of such      

project1 provide payments to each ,state
 selected under paragraph 7#d7 in       
accordance with paragraph 7#e74  7#b7   
,purpose ,the purpose described in this 
paragraph is for each ,state that       
participates in the demonstration       
project to improve access to            
high-quality outpatient care for        
individuals receiving services under the
 ,state plan 7or waiver of such plan7   
who are living with sickle cell disease 
7with a focus on1 but not limited to1   
young adults and pregnant women71 to    
improve clinical1 mental health1        
ancillary1 and support services1 and to 
reduce overall and long-term costs1 as  
appropriate1 to the ,state associated   
with treating individuals with sickle   
cell disease under the ,state plan 7or  
waiver of such plan7 through the        
following activities3 7,a7 ,supporting  
the creation or augmentation of         
multi-disciplinary care teams that      
include the physicians needed to        
adequately treat an individual for      

sickle cell disease and its             
complications1 as determined by the     
,secretary in consultation with the     
appropriate stakeholders1 including     
organizations representing sickle cell  
disease patients1 hematologists1 and    
other specialists in sickle cell disease
 care and treatment4  7,b7 ,conducting  
an assessment of the barriers to care   
experienced by individuals with sickle  
cell disease enrolled under the ,state  
plan 7or waiver of such plan71 taking   
into account social1 demographic1 and   
economic factors1 geography1 provider   
shortages1 and other issues contributing
 to health inequities1 as determined by 
the ,secretary in consultation with     
relevant stakeholders1 including        
organizations representing sickle cell  
disease patients1 hematologists1 and    
other specialists in sickle cell disease
 care and treatment4  7,c7 ,identifying 
best practices for improving health     
equity for individuals with sickle cell 
disease enrolled under the ,state plan  

7or waiver of such plan7 which take into
 account the results of the assessment  
described in subparagraph 7,b71 and     
communicating such best practices       
through the provision of education1     
training1 and technical assistance to   
providers participating under the ,state
 plan 7or waiver of such plan71         
including to care teams described in    
subparagraph 7,a74  7,d7 ,expanding     
expertise of providers participating    
under the ,state plan 7or waiver of such
 plan7 on care for sickle cell disease  
by disseminating clinical practice      
guidelines for sickle cell disease and  
providing education1 training1 and      
technical assistance with respect to    
such guidelines to such providers4  7,e7
 ,ensuring that sickle cell disease     
patients enrolled under the ,state plan 
7or waiver of such plan7 are getting    
primary and preventive services in an   
appropriate outpatient setting or       
through telehealth services1 as         
appropriate1 including by providing     

additional reimbursement for care       
coordinators1 community health workers1 
and other non-traditional service       
providers4  7,f7 ,developing an         
individualized1 comprehensive1          
patient-centered care plan for          
individuals with sickle cell disease    
that accommodates patient preferences in
 a culturally and linguistically        
appropriate manner4  7,g7 ,ensuring that
 sickle cell disease patients enrolled  
under the ,state plan 7or waiver of such
 plan7 are provided with coordination   
of1 and access to1 the following        
services1 as determined to be clinically
 appropriate3 7i7 ,treatments and       
medications1 including chronic and      
exchange transfusions and               
disease-modifying medications4  7ii7    
,appropriate diagnostic testing such as 
magnetic resonance imaging4  7iii7 ,pain
 management treatment and palliative    
care4  7iv7 ,services provided by       
subspecialists such as obstetricians and
 gynecologists1 reproductive health     

specialists1 urologists1                
ophthalmologists1 neurologists1         
nephrologists1 psychologists1           
orthopedists1 cardiologists1 and        
pulmonologists4  7v7 ,supportive        
clinical services1 including vision and 
dental care4  7vi7 ,mental health       
services and substance use disorder     
treatment4  7vii7 ,transportation to    
medical services and social support     
services and referrals to               
community-based organizations4  7viii7  
,any other therapies approved by the    
,food and ,drug ,administration for the 
treatment of sickle cell disease or its 
complications4  7ix7 ,any other services
 deemed appropriate for the treatment of
 sickle cell disease or its             
complications by the ,state4  7,h7      
,providing other services or taking     
other actions deemed necessary to       
improve treatment of sickle cell disease
 under the ,state plan 7or waiver of    
such plan71 as determined by the        
,secretary in coordination with relevant

 stakeholders1 including organizations  
representing sickle cell disease        
patients1 hematologists1 and other      
specialists in sickle cell disease care 
and treatment4  7#c7 ,planning grants   
7,a7 ,in general ,the ,secretary shall  
award planning grants to at least #aj   
,states selected in accordance with     
subparagraph 7,b7 for purposes of       
preparing an application described in   
paragraph 7#d77;,c7 and carrying out the
 activities described in subparagraph   
7,c74  7,b7 ,selection ,in selecting    
,states for purposes of this paragraph1 
the ,secretary shall-- 7i7 select       
,states that have a ,state plan approved
 under this title2  7ii7 give priority  
to ,states that have participated in the
 sickle cell disease surveillance data  
collection program of the ,centers for  
,disease ,control and ,prevention or    
precursors to such program2 and  7iii7  
select ,states in a manner to recognize 
,states with a higher prevalence of     
sickle cell disease patients that could 

be reached through this demonstration   
project4  7,c7 ,activities described    
,activities described in this           
subparagraph are1 with respect to a     
,state1 each of the following3 7i7      
,activities that support an assessment  
of the treatment needs and gaps in care 
in the ,state for individuals with      
sickle cell disease in order to improve 
the network of providers that treat this
 population1 including the following3   
7,i7 ,an estimate of the number of      
individuals enrolled under the ,state   
plan 7or a waiver of such plan7 who have
 sickle cell disease4  7,,ii7           
,information on the capacity of         
providers with the knowledge needed to  
treat sickle cell disease and the       
complications of sickle cell disease1   
including information on providers who  
provide such services and their         
participation under the ,state plan 7or 
waiver of such plan74  7,,iii7          
,information on the gaps in care for    
treatment of individuals with sickle    

cell disease under the ,state plan 7or  
waiver of such plan71 including         
information based on the assessments    
described in subclauses 7,i7 and 7,,ii74
  7ii7 ,activities that1 taking into    
account the results of the assessment   
described in clause 7i71 support the    
development of ,state infrastructure to 
recruit prospective providers and       
provide training and technical          
assistance to providers with respect to 
treatment of sickle cell disease under  
the ,state plan 7or a waiver of such    
plan74  7,d7 ,funding ,for the purpose  
of making grants under this paragraph1  
there is appropriated to the ,secretary1
 out of any funds in the ,treasury not  
otherwise appropriated1 #be1jjj1jjj1 to 
remain available until expended4  7#d7  
,post-planning grant states  7,a7 ,in   
general ,the ,secretary shall1 with     
respect to the remaining #db-month      
period of the demonstration project     
conducted under paragraph 7#a71 select  
up to #aj1 but not less than #e ,states 

in accordance with subparagraph 7,b7 for
 purposes of carrying out the activities
 described in paragraph 7#b7 and        
receiving payments in accordance with   
paragraph 7#e74 ,the ,secretary may     
select all ,states that received a      
planning grant in paragraph 7#c74  7,b7 
,selection ,in selecting ,states for    
purposes of this paragraph1 the         
,secretary shall-- 7i7 select ,states   
that received a planning grant under    
paragraph 7#c7 and have successfully    
completed the activities described in   
subparagraph 7,c7 of such paragraph2    
7ii7 select ,states that submit to the  
,secretary an application in accordance 
with the requirements in subparagraph   
7,c72 and  7iii7 select ,states in a    
manner consistent with reaching as many 
sickle cell disease patients as possible
 through the demonstration project4     
7,c7 ,applications  7i7 ,in general ,a  
,state seeking to be selected for       
purposes of this paragraph shall submit 
to the ,secretary1 at such time and in  

such form and manner as the ,secretary  
requires1 an application that includes  
such information as the ,secretary may  
require1 in addition to the following3  
7,i7 ,a proposed process for carrying   
out the activities described in         
paragraph 7#b74  7,,ii7 ,a review of    
reimbursement methodologies and other   
policies related to sickle cell disease 
treatment under the ,state plan 7or     
waiver of such plan7 that may create    
barriers to increasing the number of    
providers delivering such services4     
7,,iii7 ,the development of a plan1     
taking into account activities carried  
out under paragraph 7#c77;,c77ii71 that 
will result in long-term and sustainable
 provider networks under the ,state plan
 7or waiver of such plan7 for sickle    
cell disease4  7,,iv7 ,a proposed       
process for reporting the information   
required under paragraph 7#f77;,a74     
7,v7 ,the expected financial impact of  
the demonstration project under this    
subsection on the ,state4  7,,vi7 ,a    

description of all funding sources      
available to the ,state to provide      
treatment for sickle cell disease under 
the ,state plan 7or waiver of such plan7
 in the ,state4  7,,vii7 ,a preliminary 
plan for how the ,state will sustain any
 increase in the capacity of providers  
to deliver treatment for sickle cell    
disease and the complications of sickle 
cell disease resulting from the         
demonstration project under this        
subsection after the termination of such
 demonstration project4  7,,viii7 ,a    
description of how the ,state will      
coordinate the goals of the             
demonstration project with any waiver   
granted 7or submitted by the ,state and 
pending7 pursuant to section #aaae for  
the delivery of services to treat sickle
 cell disease under the ,state plan1 as 
applicable4  7ii7 ,consultation ,in     
completing an application under clause  
7i71 a ,state shall consult with        
relevant stakeholders1 including        
,medicaid managed care plans1           

hematologists and other sickle cell     
disease specialists1 and ,medicaid      
beneficiaries and sickle cell disease   
advocates1 and include in such          
application a description of such       
consultation4  7#e7 ,payments  7,a7     
,enhanced ,,fmap for sickle cell disease
 treatment ,notwithstanding section     
#aije7;b71 for each quarter occurring   
during the period for which the         
demonstration project is conducted      
7after the first #ah months of such     
period71 the ,federal medical assistance
 percentage for each ,state selected    
under paragraph 7#d7 with respect to    
amounts expended by the ,state for      
medical assistance for medically        
necessary services to treat sickle cell 
disease shall be equal to #ajj percent4 
7,b7 ,case management services for      
sickle cell disease patients  7i7 ,in   
general ,during the period for which the
 demonstration project is conducted     
7after the first #ah months of such     
period71 a ,state selected under        

paragraph 7#d7 may provide a            
multi-disciplinary care team described  
in paragraph 7#b77;,a7 with payments for
 the provision of case management and   
care coordination services to an        
individual with sickle cell disease who 
is eligible under the ,state plan 7or   
waiver of such plan74 ,payments made to 
such a team shall be treated as medical 
assistance for purposes of section      
#aijc7;a7 except that the ,federal      
medical assistance percentage applicable
 to such payments shall be equal to #ajj
 percent4  7ii7 ,methodology ,a ,state  
that elects to make case management and 
care coordination payments to a         
multi-disciplinary care team under this 
subparagraph shall specify in a ,state's
 application under paragraph 7#d7 the   
methodology the ,state will use for     
determining payment for the provision of
 such services4 ,such methodology shall 
not be limited to a per-member-per-month
 basis and may provide 7as proposed by  
the ,state and subject to approval by   

the ,secretary7 for alternate models of 
payment4  7#f7 ,reports  7,a7 ,state    
reports ,a ,state receiving payments    
under paragraph 7#e7 shall1 for the     
period of the demonstration project     
under this subsection1 submit to the    
,secretary a quarterly report1 with     
respect to expenditures for treatment of
 sickle cell disease and complications  
of sickle cell disease for which payment
 is made to the ,state under this       
subsection1 on the following3 7i7 ,the  
specific activities with respect to     
which payment under this subsection was 
provided4  7ii7 ,the number of          
individuals enrolled under the ,state   
plan 7or a waiver of such plan7 who     
received treatment for sickle cell      
disease or complications related to     
sickle cell disease under the           
demonstration project compared to the   
estimated number of such individuals who
 would have otherwise received such     
services in the absence of such         
demonstration project4  7iii7 ,the      

number of individuals enrolled under the
 ,state plan 7or waiver of such plan7   
who received treatment for sickle cell  
disease or complications related to     
sickle cell disease under the           
demonstration project who utilized the  
services beyond clinical sickle cell    
disease services1 including mental      
health1 ancillary and support services  
and the impact on their health outcomes1
 including emergency department visits  
and inpatient hospital stays4  7iv7 ,the
 reductions in inpatient days1          
reductions in emergency department      
visits1 and reductions in the total cost
 of care compared to these metrics      
before the demonstration project was    
implemented4  7v7 ,other matters as     
determined by the ,secretary4  7,b7     
,,cms reports  7i7 ,initial report ,not 
later than #ah months after the date of 
enactment of this subsection1 the       
,administrator of the ,centers for      
,medicare  ,medicaid ,services1 in      
consultation with the ,administrator of 

the ,health ,resources and ,services    
,administration1 shall submit to        
,congress an initial report on-- 7,i7   
the ,states awarded planning grants     
under paragraph 7#c72  7,,ii7 the       
criteria used in such selection2 and    
7,,iii7 the activities carried out by   
such ,states under such planning grants4
  7ii7 ,interim report ,not later than  
#c years after the date of enactment of 
this subsection1 the ,administrator of  
the ,centers for ,medicare  ,medicaid   
,services shall1 submit to ,congress an 
interim report-- 7,i7 on activities     
carried out under the demonstration     
project under this subsection2  7,,ii7  
on the extent to which ,states selected 
under paragraph 7#d7 have achieved the  
activities submitted in their           
applications under subparagraph 7,c7 of 
such paragraph2  7,,iii7 with a         
description of the strengths and        
limitations of such demonstration       
project2 and  7,,iv7 with a plan for the
 sustainability of such project4  7iii7 

,final report ,not later than #a year   
following the implementation of the     
demonstration project1 the ,secretary   
shall submit to ,congress and make      
public a final report-- 7,i7 providing  
updates on the matters reported in the  
interim report under clause 7ii72       
7,,ii7 including a description of any   
changes made with respect to the        
demonstration project under this        
subsection after the submission of such 
interim report2 and  7,,iii7 evaluating 
such demonstration project4  7,c7       
,report on experiences of ,states ,not  
later than #c years after the date of   
the enactment of this subsection1 the   
,administrator of the ,centers for      
,medicare  ,medicaid ,services1 in      
consultation with the ,director of the  
,agency for ,healthcare ,research and   
,quality1 shall submit to ,congress a   
summary on the experiences of ,states   
awarded planning grants under paragraph 
7#c7 and ,states selected under         
paragraph 7#d74  7#g7 ,data sharing and 

best practices ,during the period of the
 demonstration project under this       
subsection1 the ,secretary shall1 in    
collaboration with ,states selected     
under paragraph 7#d71 facilitate        
information sharing and the exchange of 
identified best practices between-- 7,a7
 providers who treat sickle cell        
disease2 and  7,b7 ,states selected     
under paragraph 7#d7 and ,states that   
were not so selected4  7#h7 ,,cms       
funding ,there is appropriated1 out of  
any funds in the ,treasury not otherwise
 appropriated1 #ej1jjj1jjj to the       
,centers for ,medicare  ,medicaid       
,services for purposes of implementing  
this subsection1 including completing   
the reports to ,congress required under 
this ,act4 ,such amount shall remain    
available until expended4  4