,,ii #aagth ,,congress #b;d ,session ,s4 #dhff ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,september #ae1 #bjbb ,mr4 ,van ,hollen 7for himself and ,mr4 ,booker7 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 #bjbb4 #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 organization working in partnership under at least one collaborative agreement with a medical hub and spoke network4 7#b7 ,eligible entity ,the term eligible entity means any entity that is a sickle cell disease treatment hub-and-spoke network that is comprised of-- 7,a7 a hub-and-spoke network that includes-- 7i7 a medical hub that is a hospital1 clinic1 or university health center2 and 7ii7 at least #a spoke working in partnership with the medical hub2 and 7,b7 at least #a community-based organization working in a partnership with the hub-and-spoke network1 or the medical hub or at least one spoke of such network4 7#c7 ,hub-and-spoke network ,the term hub-and-spoke network means a framework for delivery of health care services-- 7,a7 recommended by the ,national ,academies of ,sciences1 ,engineering1 and ,medicine in its #bjbj report titled1 ,addressing ,sickle ,cell ,disease3 ,a ,strategic ,plan and ,blueprint for ,action2 7,b7 in which a medical hub identifies and manages a medical spoke or network of spokes1 or other subsidiary entities1 to provide comprehensive sickle cell disease care2 7,c7 in which such subsidiary entities serving as spokes-- 7i7 may initially provide limited sickle cell disease care services2 and 7ii7 may evolve into hubs and connect with new spokes2 and 7,d7 in which the medical hub and spoke collaborate with a community-based organization to extend services and outreach to the sickle cell disease community4 7#d7 ,medical hub ,the term medical hub means a hospital1 clinic1 or university health center that-- 7,a7 has an outpatient treatment clinic1 infusion capabilities1 telehealth capability1 and experience serving individuals living with sickle cell disease2 and 7,b7 follows widely acceptable clinical practice guidelines4 7#e7 ,spoke ,the term spoke means an entity-- 7,a7 that is-- 7i7 a ,federally-qualified health center1 as defined in section #ahfa7;aa7 of the ,social ,security ,act2 7ii7 a ,federally-qualified health center1 as defined in section #aije7l77#b77;,b7 of the ,social ,security ,act2 or 7iii7 a hospital1 clinic1 or university health center that provides clinical care and has telehealth capability2 7,b7 that has at least #a collaborative agreement with a medical hub and a 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 coordinated longitudinal health care for all patients with sickle cell disease and individuals with sickle cell trait2 7#b7 providing support to establish integrated health care teams for patients with sickle cell disease2 7#c7 improving the health and well-being of children1 youth1 and adults with sickle cell disease2 7#d7 increasing reporting on quality and other public health measures with respect to sickle cell disease treatment2 7#e7 accurately compiling all applicable ,state sickle cell newborn screening data2 7#f7 integrating sickle cell newborn screening data with longitudinal follow-up data on sickle cell disease health outcomes and associated complications1 in collaboration with the ,sickle ,cell ,disease ,data ,collection ,program of the ,centers for ,disease ,control and ,prevention2 and 7#g7 conducting significant public health activities with respect to sickle cell disease4 7c7 ,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 published sickle cell disease treatment guidelines1 as identified by the ,secretary4 7,c7 ,educating providers on sickle cell disease treatment standards and protocols4 7,d7 ,providing integrated care management1 which may include-- 7i7 primary care2 7ii7 care management2 and 7iii7 mental health services4 7,e7 ,coordinating specialty care services1 whether provided at the medical hub or spoke4 7,f7 ,coordinating reproductive health services for sickle cell disease patients4 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 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 ,providing medical and surgical treatment to sickle cell disease patients4 7,k7 ,implementing pediatric-to-adult health care transition programs for purposes of ensuring coordinated patient graduation from pediatric to adult providers for all patients4 7,l7 ,providing social work services in coordination with a community-based organization4 7,m7 ,collecting and distributing data as required by the ,national ,sickle ,cell ,disease ,coordinating ,center established under this section or otherwise required by the ,director of the ,centers for ,disease ,control and ,prevention4 7,n7 ,engaging in quality improvement with respect to standards of care for health and quality of life outcomes among sickle cell disease patients as identified by the ,secretary4 7#b7 ,community-based organization ,the community-based organization of the eligible entity shall provide or coordinate each of the following3 7,a7 ,providing education and outreach to sickle cell disease patients1 caregivers1 and health providers4 7,b7 ,providing support in addressing social determinants of health4 7,c7 ,providing social work services in coordination with a medical hub or spoke4 7,d7 ,testing or coordinating testing for sickle cell conditions and for carrier states that put a family at risk for having a child with sickle cell disease4 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 the approved standards of care for such patients4 7,c7 ,providing primary care services 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 in coordination with a community-based organization4 7,h7 ,collecting and distributing data required by the ,national ,sickle ,cell ,disease ,coordinating ,center established under this section and the ,sickle ,cell ,disease ,data ,collection ,program of the ,centers for ,disease ,control and ,prevention4 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 care 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 to the extent feasible2 7,d7 to fund evidence-based programs that provide education to teachers and school personnel1 correctional institution personnel1 and health care professionals on the care of individuals with sickle cell disease in health care settings and other appropriate settings1 including schools and prisons2 7,e7 to offer transportation services for sickle cell disease patients who do not have1 but who need access to in-person care with the ,sickle ,cell ,disease ,treatment ,centers2 and 7,f7 to facilitate access to sickle cell trait testing and genetic counseling4 7d7 ,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 7c74 ,such an application may be submitted on behalf of the eligible entity by a hub-and-spoke network or by the community-based organization4 7#b7 ,geographic distribution ,the ,secretary1 acting through the ,administrator of the ,health ,resources and ,services ,administration1 shall award grants under this section1 to the extent practicable1 to eligible entities located across the ,united ,states1 with a focus on regions where a disproportionate number of patients with sickle cell disease or other heritable hemoglobinopathy patients per capita reside1 and with the intention of awarding grants 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 #aife 7#bj ,u4,s4,c4 #ajfa77 or minority serving institution 7defined as an eligible institution under section #cga of such ,act 7#bj ,u4,s4,c4 #ajfgq77 that has a medical school2 7,b7 serve an area with a prevalence of sickle cell disease2 or 7,c7 serve a rural area4 7#d7 ,eligible patients ,for purposes of this section1 patients who may be treated by ,sickle ,cell ,disease ,treatment ,centers1 or who may be supported by public health activities and other programming1 shall include patients with sickle cell disease1 and may include patients with other heritable hemoglobinopathies4 7e7 ,national ,sickle ,cell ,disease ,coordinating ,center 7#a7 ,in ,general ,the ,secretary1 acting through the ,administrator of the ,health ,resources and ,services ,administration1 shall enter into a contract with an entity to serve as 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 ,coordinate the infrastructure of ,sickle ,cell ,disease ,treatment ,centers established under subsection 7b74 7,b7 ,coordinate and support hub-and-spoke frameworks4 7f7 ,,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 shall coordinate the following with respect to eligible entities under this section3 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 disease and sickle cell trait1 including subtypes as applicable1 and their associated health outcomes and complications1 including for the purpose of-- 7,a7 improving national incidence and prevalence data1 including the geographic distribution of affected individuals2 7,b7 working with the ,state newborn screening programs to establish a national registry of sickle cell newborn screening data to serve as a foundation for assessing longevity and the prevalence of complications resulting from sickle cell disease2 7,c7 identifying health disparities impacting individuals born with sickle cell disease and sickle cell trait1 including subtypes as applicable1 and other hemoglobinopathies2 7,d7 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,e7 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 prevention and treatment of sickle cell disease and the prevalence of sickle cell trait4 7#d7 ,preparing and submitting to ,congress a final report that includes recommendations regarding the effectiveness of the ,sickle ,cell ,disease ,treatment ,centers established under subsection 7b7 and direct outcome measures1 including-- 7,a7 the number and type of health care resources utilized 7such as emergency room visits1 hospital visits1 length of stay1 and physician visits for individuals with sickle cell disease72 and 7,b7 the number of individuals that were tested and subsequently received genetic counseling for the sickle cell trait4 7g7 ,request for information ,not later than #ahj days after the date of enactment of the ,sickle ,cell ,disease ,treatment ,centers ,act of #bjbb1 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 7h7 ,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 #bjbb and every #e years thereafter1 the ,secretary shall submit to ,congress 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 framework 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 and 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 age4 7i7 ,authorization of appropriations ,there are authorized to be appropriated to carry out this section1 #ece1jjj1jjj for fiscal year #bjbc and each fiscal year thereafter4 ,of the amount made available for a fiscal year under the preceding sentence1 not less than-- 7#a7 #gj percent shall be used to award grants to at least #abh eligible entities where the application is submitted by medical hubs or spokes2 7#b7 #bj percent shall be used to award grants to at least #ajj eligible entities where the application is submitted by community-based sickle cell disease organizations or nonprofit entities that are part of an eligible entity2 7#c7 #e percent shall be used for the establishment and maintenance of the ,national ,sickle ,cell ,disease ,coordinating ,center described in subsection 7e72 and 7#d7 #e percent shall be used for the activities of the ,sickle ,cell ,data ,collection program of the ,centers for ,disease ,control and ,prevention described in this section4 4