,,ii  #aaith ,,congress  #b;d ,session  
,s4 #edhh  ,,in ,,the ,,senate ,,of     
,,the ,,united ,,states  ,september #bc1
 #bjbf,mr4 ,van ,hollen 7for himself1   
,mr4 ,booker1 and ,ms4 ,klobuchar7      
introduced the following bill2 which was
 read twice and referred to the         
,committee on ,health1 ,education1      
,labor1 and ,pensions  ,a ,,bill  ,to   
establish a program to address sickle   
cell disease and other heritable        
hemoglobinopathies4  #a4 ,short title   
,this ,act may be cited as the ,sickle  
,cell ,disease ,treatment ,centers ,act 
of #bjbf4  #b4 ,establishment of sickle 
cell disease and other heritable        
hemoglobinopathies treatment centers    
,subpart ,i of part ,d of title ,,iii of
 the ,public ,health ,service ,act 7#db 
,u4,s4,c4 #bed;b et seq47 is amended by 
inserting after section #ccj,p 7#db     
,u4,s4,c4 #bed;c-#bb7 the following3    
#ccj,q4 ,sickle cell disease and other  
heritable hemoglobinopathies treatment  
centers  7a7 ,definitions ,in this      

section3 7#a7 ,community-based          
organization ,the term community-based  
organization means a community-based    
nonprofit organization4  7#b7           
,hub-and-spoke network ,the term        
hub-and-spoke network means a system for
 delivery of health care services-- 7,a7
 in which a medical hub identifies and  
manages a medical spoke or network of   
spokes1 to provide comprehensive sickle 
cell disease care2  7,b7 in which such  
entities serving as spokes-- 7i7 may    
provide sickle cell disease care        
services2 and  7ii7 may increase        
services over time to meet the          
definition of medical hubs and connect  
with new spokes2 and  7,c7 in which the 
medical hub-and-spoke has a partnership 
with one or more community-based        
organizations to extend services and    
outreach to the sickle cell disease     
community4  7#c7 ,medical hub ,the term 
medical hub means a hospital1 clinic1 or
 university health center that-- 7,a7   
provides comprehensive sickle cell      

disease treatment1 which may include    
medical and surgical treatment1 such as 
provision of stem cell transplants and  
cell and gene therapies1 an outpatient  
treatment clinic led by a               
board-certified hematologist1 infusion  
capability1 telehealth capability1      
genetic counseling1 access to home care1
 and a pharmacy2  7,b7 has experience   
serving individuals living with sickle  
cell disease or other                   
hemoglobinopathies2  7,c7 follows       
consensus-based clinical practice       
guidelines2 and  7,d7 may be a grantee  
or coordinate with grantees of the      
,sickle ,cell ,disease ,treatment       
,demonstration ,program under section   
#aajf7;b74  7#d7 ,spoke ,the term spoke 
means an entity-- 7,a7 that provides    
health care services1 including-- 7i7 a 
,federally-qualified health center1 as  
defined in section #aije7l77#b77;,b7 of 
the ,social ,security ,act2  7ii7 a     
hospital1 clinic1 or university health  
center that provides clinical care and  

has telehealth capability2  7iii7 a     
primary care provider2  7iv7 an         
outpatient treatment clinic2  7v7 an    
infusion center2 or  7vi7 other health  
care providers2  7,b7 that has at least 
#a collaborative agreement with a       
medical hub and one or more             
community-based organization2 and  7,c7 
that incorporates a community health    
worker into the care team4  7b7 ,program
 established ,the ,secretary shall award
 grants to eligible entities to         
establish treatment centers using a     
hub-and-spoke framework 7referred to in 
this section as ,sickle ,cell ,disease  
,treatment ,centers71 for the purposes  
of-- 7#a7 promoting access to           
coordinated1 lifelong health care for   
all patients with sickle cell disease2  
7#b7 providing support to establish     
integrated health care teams for        
patients with sickle cell disease over a
 patient's lifetime2  7#c7 improving the
 health and well-being of children1     
youth1 and adults with sickle cell      

disease2  7#d7 improving the            
pediatric-to-adult health care          
transition2  7#e7 collecting and        
contributing clinical data from ,states 
participating in the ,sickle ,cell ,data
 ,collection program of the ,centers for
 ,disease ,control and ,prevention1     
including the collection of health      
outcomes and associated complications   
reported pursuant to such program2  7#f7
 ensuring that reporting with respect to
 sickle cell disease includes reporting 
on all patients with sickle cell        
disease1 including migrating and        
foreign-born patients2 and  7#g7        
conducting significant public health    
awareness and education activities with 
respect to sickle cell disease and      
sickle cell trait4  7c7 ,eligible entity
 ,the term eligible entity means any    
entity that is comprised of-- 7#a7 a    
hub-and-spoke network that includes--   
7,a7 a medical hub that is a hospital1  
clinic1 or university health center2 and
  7,b7 at least #a spoke working in     

partnership with the medical hub2 and   
7#b7 at least #a community-based        
nonprofit organization working in a     
partnership with the hub-and-spoke      
network4  7d7 ,use of funds by eligible 
entities ,an eligible entity shall use  
grant funds received under this section 
as follows3 7#a7 ,medical hub ,the      
medical hub of the eligible entity shall
 carry out the following3 7,a7          
,operating and administrating costs of  
operating a hub-and-spoke framework4    
7,b7 ,complying with consensus-based    
sickle cell disease treatment           
guidelines1 as identified by the        
,secretary4  7,c7 ,educating health care
 providers on sickle cell disease       
treatment standards and protocols4  7,d7
 ,providing integrated care management1 
which may include-- 7i7 primary care2   
7ii7 specialty care2  7iii7 pain        
management2  7iv7 mental health         
services2  7v7 genetic counseling       
services2 and  7vi7 other services4     
7,e7 ,coordinating specialty care       

services1 whether provided at the       
medical hub or spoke4  7,f7             
,coordinating reproductive health and   
family planning services for patients   
with sickle cell disease1 trait1 or     
other hemoglobinopathies4  7,g7         
,providing a dedicated sickle cell      
expert at the medical hub to assist in  
overseeing care of sickle cell disease  
patients at spokes and to advise the    
community-based organization4  7,h7     
,educating health care providers on     
social determinants of health and       
implicit bias that may affect quality of
 care and life for patients with sickle 
cell disease1 trait1 or other           
hemoglobinopathies4  7,i7 ,providing    
telehealth appointments to patients when
 appropriate and facilitating access to 
telehealth services for sickle cell     
disease patients to the extent feasible4
  7,j7 ,implementing pediatric-to-adult 
health care transition programs for     
purposes of ensuring coordinated patient
 graduation from pediatric to adult     

providers for all patients4  7,k7       
,providing social work services or      
community health worker services in     
coordination with one or more           
community-based organizations4  7,l7    
,collecting and distributing data as    
required by the ,national ,sickle ,cell 
,disease ,coordinating ,center          
established under subsection 7f7 or     
otherwise required by the ,secretary4   
7,m7 ,engaging in quality improvement   
with respect to such standards of care  
for health and quality of life outcomes 
among sickle cell disease patients as   
the ,secretary may require4  7#b7       
,community-based organization ,the      
community-based organization of the     
eligible entity shall provide or        
coordinate services to patients and     
families1 which may include the         
following3 7,a7 ,providing education and
 outreach to individuals at-risk for    
sickle cell trait1 individuals with     
sickle cell trait1 sickle cell disease  
patients1 caregivers1 and health care   

providers4  7,b7 ,providing support in  
addressing social determinants of       
health1 such as food insecurity1 housing
 insecurity1 and access to education and
 transportation4  7,c7 ,providing social
 work services or community health      
worker services in coordination with a  
medical hub or spoke4  7,d7 ,testing or 
coordinating testing for individuals    
at-risk for sickle cell trait and       
individuals with sickle cell trait that 
increase the likelihood of having a     
child with sickle cell disease1         
including through coordination with a   
genetic counselor4  7,e7 ,engaging in   
quality improvement with respect to     
standards of care or health and quality 
of life outcomes among sickle cell      
disease patients1 as identified by the  
,secretary4  7#c7 ,spoke ,the spokes of 
the eligible entity shall provide or    
coordinate each of the following        
services3 7,a7 ,collaborating with a    
medical hub to coordinate and support   
care for sickle cell disease patients4  

7,b7 ,providing standards of care as    
developed in coordination with the      
medical hub4  7,c7 ,providing primary   
care services1 genetic counseling1 or   
specialty care4  7,d7 ,providing        
telehealth appointments1 as appropriate4
  7,e7 ,providing medical or surgical   
treatment4  7,f7 ,implementing          
individual care plans4  7,g7 ,providing 
social work services or community health
 worker services in coordination with   
one or more community-based             
organizations4  7,h7 ,collecting and    
distributing data as required by the    
,national ,sickle ,cell ,disease        
,coordinating ,center established under 
subsection 7f74  7#d7 ,additional uses  
of funds ,in addition to the uses of    
funds described in paragraphs 7#a71     
7#b71 and 7#c71 an eligible entity      
selected to receive a grant under this  
section may use funds received through  
the grant-- 7,a7 to identify and secure 
resources for ensuring reimbursement    
under1 for the ,state involved1 the     

,state plan under title ,,xix of the    
,social ,security ,act 7or a waiver of  
such plan71 ,state child health plan    
under title ,,xxi of such ,act 7or a    
waiver of such plan71 and other health  
programs for the prevention and         
treatment of sickle cell disease1       
including by working with               
community-based sickle cell disease     
organizations and other nonprofit       
entities2  7,b7 to assist sickle cell   
disease patients with accessing         
appropriate health insurance1           
including-- 7i7 through the payment of  
insurance premiums and cost-sharing     
amounts1 to the extent otherwise        
permitted under ,state and ,federal law2
  7ii7 by working with community-based  
sickle cell disease organizations and   
other nonprofit entities2 and  7iii7 by 
helping sickle cell disease patients    
know their rights with insurance        
programs2  7,c7 to facilitate access to 
telehealth services for sickle cell     
disease patients and individuals with   

sickle cell trait1 to the extent        
feasible2  7,d7 to fund evidence-based  
programs that provide education to      
health care providers1 teachers and     
school personnel1 and correctional      
institutional personnel1 on the care of 
individuals with sickle cell disease or 
trait in health care settings and other 
appropriate settings1 including schools 
and prisons2  7,e7 to develop a system  
of social and community supports1       
including transportation services or    
travel reimbursement for sickle cell    
disease patients who do not have1 but   
who need access to1 in-person care with 
the ,sickle ,cell ,disease ,treatment   
,centers2 and  7,f7 to facilitate access
 to sickle cell trait testing and       
genetic counseling4  7e7 ,application2  
selection  7#a7 ,application ,an        
eligible entity desiring a grant under  
this section shall submit an application
 to the ,secretary at such time1 in such
 manner1 and containing such information
 as the ,secretary may require1         

including a description of how the      
hub-and-spoke entity and community-based
 organization will collaborate in       
carrying out the activities described in
 subsection 7d74  7#b7 ,geographic      
distribution ,the ,secretary shall award
 grants under this section1 to the      
extent practicable1 to eligible         
entities1 with a focus on regions where 
a disproportionate number of patients   
with sickle cell disease1 individuals   
with sickle cell trait1 or other        
heritable hemoglobinopathy patients per 
capita reside1 and to eligible entities 
nationwide so that patients can access  
more comprehensive sickle cell disease  
treatment services no matter where they 
reside4  7#c7 ,priorities in making     
awards ,in awarding grants under this   
section1 the ,secretary may give        
priority to eligible entities that--    
7,a7 include at least one historically  
,black college or university 7defined as
 a part ,b institution under section    
#cbb of the ,higher ,education ,act of  

#aife7 or minority serving institution  
7defined as an eligible institution     
under section #cga of such ,act7 that   
has a medical school1 nursing school1   
nurse practitioner or physician         
assistant program1 genetic counseling   
program1 or school of social work2  7,b7
 serve an area with a high prevalence of
 sickle cell disease2 or  7,c7 serve a  
rural area4  7f7 ,national sickle cell  
disease coordinating center  7#a7 ,in   
general ,the ,secretary shall establish1
 or enter a cooperative agreement with  
an entity to establish1 the ,national   
,sickle ,cell ,disease ,coordinating    
,center1 which shall coordinate the     
activities conducted by grantees under  
this section and carry out the          
activities described in paragraph 7#b74 
7#b7 ,duties ,the ,national ,sickle     
,cell ,disease ,coordinating ,center    
shall carry out each of the following   
activities3 7,a7 ,advise the ,secretary 
on the design and implementation of1 and
 coordinate the infrastructure of1 the  

,sickle ,cell ,disease ,treatment       
,centers established under subsection   
7b71 including with respect to          
administrative requirements and ensuring
 that sickle cell health care is        
available across the ,united ,states4   
7,b7 ,develop a national strategy for   
the practice of equitable care1         
coordinated comprehensive quality care1 
research and resources for patients and 
health care providers1 and treatment    
modality options to improve patient     
outcomes1 and submit such national      
strategy to the ,secretary4  7,c7       
,coordinate with ,federal agencies to   
improve data collection over the        
lifespan of patients and routinely      
update a national needs assessment to   
improve care for individuals impacted by
 sickle cell disease4  7,d7 ,coordinate 
with hub-and-spoke networks1 patients1  
researchers1 and health care providers  
to maintain a comprehensive sickle cell 
research1 treatment1 and national care  
strategy4  7,e7 ,establish a rotating   

panel of stakeholders1 including health 
care providers1 patients1 individuals   
impacted by sickle cell disease1 allied 
health professionals1 care coordinators1
 social workers1 community health       
workers1 and sickle cell community-based
 and advocacy organizations to advise   
the ,center1 provide up-to-date         
information and forecasts on status and 
plans for improving sickle cell care1   
treatment1 and access to treatment      
modalities for individuals and families 
living with sickle cell disease4  7,f7  
,coordinate and support hub-and-spoke   
frameworks4  7,g7 ,support improvement  
in patient and family-centered care1    
health outcomes1 and care affordability 
by improving access to care4  7,h7      
,provide or coordinate technical        
assistance and support to health care   
providers1 family members and advocates1
 public health professionals1           
policymakers1 and patients that want to 
improve access to quality care1         
telemedicine1 family planning1 health   

care transition1 and family and         
community engagement4  7,i7 ,inform and 
educate the public about sickle cell    
disease1 sickle cell trait1 and options 
for quality care4  7g7 ,,cdc sickle cell
 disease data collection program for    
,,scd treatment centers ,the ,secretary1
 acting through the ,director of the    
,centers for ,disease ,control and      
,prevention1 in coordination with the   
,national ,sickle ,cell ,coordinating   
,center established under subsection    
7f71 shall carry out the following3 7#a7
 ,collecting1 coordinating1 monitoring1 
and distributing data1 best practices1  
and findings regarding the activities   
funded under grants made to eligible    
entities under this section4  7#b7      
,collecting and maintaining up-to-date  
data on sickle cell disease1 including  
subtypes as applicable1 and their       
associated health outcomes and          
complications1 in consultation with     
,states participating in the ,sickle    
,cell ,data ,collection of the ,centers 

for ,disease ,control and ,prevention1  
including for the purpose of-- 7,a7     
improving national incidence and        
prevalence data1 including the          
geographic distribution of affected     
individuals2  7,b7 identifying health   
disparities impacting individuals born  
with sickle cell disease1 including     
subtypes as applicable1 and other       
hemoglobinopathies2  7,c7 assessing the 
utilization of therapies1 comprehensive 
complication risk screening1 and        
strategies to prevent complications     
resulting from sickle cell disease and  
to increase quality of life2 and  7,d7  
evaluating the effects of genetic1      
environmental1 behavioral1 and other    
risk factors that may affect individuals
 with sickle cell disease4  7#c7        
,developing educational materials1      
public awareness campaigns1 or other    
outreach programs regarding the         
inheritance pattern1 treatment of1 and  
prevention of complications from sickle 
cell disease and prevalence of sickle   

cell trait1 as well as programs and     
activities that will enhance the lives  
of individuals living with sickle cell  
disease and sickle cell disease trait4  
7h7 ,request for information ,not later 
than #ahj days after the date of        
enactment of the ,sickle ,cell ,disease 
,treatment ,centers ,act of #bjbf1 and  
in advance of each new grant cycle      
thereafter1 the ,secretary shall publish
 in the ,federal ,register a request for
 information seeking feedback from      
stakeholders on-- 7#a7 best practices   
with respect to the establishment and   
implementation of ,sickle ,cell ,disease
 ,treatment ,centers2 and  7#b7 any     
other information that the ,secretary   
may require4  7i7 ,report to ,congress  
7#a7 ,in general ,not later than #c     
years after the date of the enactment of
 the ,sickle ,cell ,disease ,treatment  
,centers ,act of #bjbf1 and every #e    
years thereafter1 the ,secretary shall  
submit to the ,committee on ,health1    
,education1 ,labor1 and ,pensions and   

the ,committee on ,appropriations of the
 ,senate and the ,committee on ,energy  
and ,commerce and the ,committee on     
,appropriations of the ,house of        
,representatives a report on the impact 
of the ,sickle ,cell ,disease ,treatment
 ,centers established under this section
 on health outcomes for sickle cell     
disease patients4  7#b7 ,report elements
 ,the report described in this section  
shall include-- 7,a7 a summary and      
description of eligible entities        
operating a hub-and-spoke system that   
are receiving grant funds under this    
section2  7,b7 information about the    
specific activities supported by grant  
funds awarded under this section with   
respect to each eligible entity2  7,c7  
the number of sickle cell disease       
patients served by grant programs funded
 under this section and demographic     
information about those patients1       
including race1 sex1 gender1 geographic 
location1 and age2 and  7,d7 information
 about patient experiences with the     

hub-and-spoke system and community-based
 organizations4  7j7 ,supplement1 not   
supplant ,the activities under this     
section shall supplement1 not supplant1 
otherwise authorized activities of the  
,department of ,health and ,human       
,services relating to sickle cell       
disease4  7k7 ,authorization of         
appropriations  7#a7 ,in general ,to    
carry out this section1 there are       
authorized to be appropriated such sums 
as may be necessary for fiscal year     
#bjbg and each fiscal year thereafter4  
7#b7 ,allocation to activities ,of the  
amount appropriated under paragraph 7#a7
 for a fiscal year-- 7,a7 #gj percent   
may be awarded to eligible entities for 
purposes of supporting the activities of
 hub-and-spoke networks that are a part 
of such eligible entities2  7,b7 #bj    
percent may be awarded to eligible      
entities for purposes of supporting the 
activities of community-based           
organizations that are a part of such   
eligible entities2  7,c7 #e percent may 

be used for the establishment and       
maintenance of the ,national ,sickle    
,cell ,disease ,coordinating ,center    
described in subsection 7f72 and  7,d7  
#e percent may be used for the          
activities of the ,sickle ,cell ,data   
,collection program of the ,centers for 
,disease ,control and ,prevention       
described in subsection 7g74  4